2020 Change Makers Transcripts
Episodes 1–20
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Jack: 0:01
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Sara: 0:18
Welcome back to Change Makers. My name is Sara and today is bittersweet. After 34 years at APH Gary Mudd, Vice President, Government and Community Affairs is retiring. Gary spent much of his time in Washington meeting with politicians and representatives from the Department of Education and showing them why APH and the products and services we offer are so important. In this episode of Change Makers Gary’s longtime colleague, APH Museum Director, Mike Hudson sits down with Gary to talk and reflect about his childhood, his work at APH, his hopes for APH and what he’s looking forward to in retirement. After that, I’ll talk to Mike about his thoughts on Gary’s impact.
Mike: 1:01
So Gary, why don’t you tell us a little bit about where you grew up and where you went to school?
Gary: 1:07
Oh my, okay. I grew up on a farm in central Kentucky, a small, very small Berg . Oh , Fredericks down in , uh, the, on the Nelson in Washington County line. I went to school early on at the little parochial school in that town , um, Berg . And then whenever I went blind at age 12, finally , uh, started out in 11 and had several operations and then was totally blind at 12. I came to the Kentucky School for the Blind and , uh, graduated high school from there. Uh , then I went to the University of Louisville and the University of Kentucky.
Mike: 2:01
So , uh , you get out of college at where else have you worked at , uh, prior to coming to APH?
Gary: 2:10
Are you talking about all my jobs or no , all
Mike: 2:14
Your jobs prior to coming to APH,
Gary: 2:16
I started working at age 16 at the Industries for the Blind. At that time, it was called that Kentucky Industries for the Blind. I put together whiskey, decanter tops. Um, back in the day, I don’t even know whether they do this anymore or not. The bourbon manufacturers would have the decanters that would , be specially designed for holidays or whatever. And they had a top that I would assemble the cork and the washers that was piecemeal a work. I got paid by the gross, and then I spent a whole day selling light bulbs . That was a short-lived career. I knew that I didn’t want to do that the rest of my life. Yeah . And then I , uh , went back to the Kentucky Industries for a brief time , uh , to do some more of that, the bottle of wash bottle decanters. And then I got a job , um, in between my junior and senior year of college at WHAS and WANZ radio producing commercials and the assistant music director for WAHS, because at the time they played music, this was in 1979, 80 in that timeframe. And I worked for them for four years. And , um , then that was about the time that the Bingham’s who owned the stations, who owned a newspaper in town, the Courier-Journal, they sold their businesses. And , um, and I , I always kid, but , um , it’s true. I think I was part of that sale. I was laid off after that. And then I went back to school, finished my degree, looked for a job for two years on instantly . And , uh , then I came to APH 1986.
Mike: 4:46
So how did you, how did you end up at APH who interviewed you and what job did you apply for?
Gary: 4:52
I, again, I’m kidding, but I am serious as well. I think I aggravated Carson Nolan into a position here. Carson was the president at that time. And I hadn’t met him probably 10 years before this, on an airplane by accident going. I was going to , um, get my first guide dog when I was in college. And he was going to a conference in New York City. We sat beside one another. I don’t know whether that was accidental or on purpose. Uh, and I’ve introduced myself, talked to him for the whole flight. And then 10 years later, I came to him requesting to be considered for a position at APH. And it took about probably six months of us going back and forth. And he finally said yes and hired me. And , uh, that’s when it started in October of , uh , 1986.
Mike: 6:00
Was your first day like Gary?
Gary: 6:02
Oh, my , um, it’s been too long to remember my first day, but yeah, I think I do remember Scott Blome was my immediate supervisor. He was in , uh , he was in doing marketing and communications at the time.
Mike: 6:18
Scott hadn’t been there, but a few years himself at that point,
Gary: 6:22
Scott had only been there one year. And , um , so I was assistant marketing for , uh, for Scott and for Ralph McCracken . Most of what I did at first was , uh, communicate with exofficio trustees. That was what I was responsible for doing and calling them, talking to them, emailing him , however, I could communicate with them.
Mike: 6:51
Where are you educating them? Or, or, or was it more getting them to use their quota?
Gary: 6:56
Um, I’m mostly talking to them about quota and there , even back then, there were many new exofficios who were just learning about what federal court it was, all of that.
Mike: 7:09
Right. So you’re constantly educating a new crop of , of young people.
Gary: 7:14
Yes. Yeah. And being friends with the old ones,
Mike: 7:20
You were the first vice president at APH who is blind or visually impaired.
Gary: 7:28
I think that’s true.
Mike: 7:30
And , uh , I believe that you are the most senior member of APH staff who’s visually impaired. I mean, historically
Gary: 7:41
Yes . Yes .
Mike: 7:43
So how did that come about? How, how did you go from this guy that Carson basically put on Ralph to being the vice-president?
Gary: 7:56
Hmm . Well, I, you know, I, I guess lots of experience , um, you know, I was open to change and growing in , in whatever direction I needed to. Um, and this opportunity, I guess , let me start at the beginning of the biggest change, I suppose in the early nineties, there was , uh , an effort. I shouldn’t say we had, we had a Congressman in Western Kentucky , uh, and I won’t say his name , uh , who knew very little about us, but he was on the labor health and human services and education subcommittee . And he had notified us that we would likely look at a 40% reduction in our appropriation if we didn’t hire more blind and visually impaired people.
Mike: 9:10
Now, is that under pressure from consumer groups was receiving pressure. Yes, he was,
Gary: 9:18
As it was. And so I had been to Washington several times with Tom Tinsley, who was the president of after 1989 to present to the labor health and human services and education subcommittee on the house stuff. And whenever we were notified of this possible reduction, we knew that it was probably time for us to be more active advocates in Washington up until then we were, we would generally go only when invited so that early nineties, I’m thinking 1992 , 1993, we began that effort to advocate in Washington without being invited, just making appointments.
Mike: 10:21
What was that first visit like for you, Gary and was tuck with you?
Gary: 10:26
Uh, no, that was another story, I guess. Um, whenever we decided that we would become advocates , um, I called Scott Marshall who worked for AFB. He was , uh , an attorney for AFA , the American foundation. Why at that time he was there , uh , lobbyist slash advocate policy person. Scott was a graduate of Harvard law school. I called him and said , uh , this is the situation. And he said, come to Washington, I’ll spend a week with you, take you around, introduce you to people and teach you how to be an advocate. And , um , then he also said, by the way, you should come by yourself. That was difficult for me to go tell Tom Tinsley that I would be going to Washington by myself, but tuck agreed to that. He was, he was very willing for that to begin. And that’s how I came about.
Mike: 11:39
I know at one point you had the title of director of public affairs. Was that about that time that that came into being yes. Yeah.
Gary: 11:48
And then the vice president position came around 2002.
Mike: 11:55
So what do you remember whose office you went to the very first, you know, Congressman or Senator that you went to first?
Gary: 12:03
I think I’m pretty sure that it was a Senator McConnell really.
Mike: 12:10
Did you meet directly with Sarah McConnell? Yes.
Gary: 12:15
Early on. And , um, but then I focused mostly , um , the sub committee members. Right. And I would always go to our own Kentucky delegation.
Mike: 12:31
So what were the challenges for a , um, I mean, you were using a dog guide. Was that Heathcliff?
Gary: 12:40
Yes, I was. It was Heathcliff. Yeah , I was, I was scared. I , um, I grew to appreciate people in Washington. Uh, up until that point, I had little contact with politics policy , uh, with people in DC. Um, and I was pretty skeptical of the whole political scene at the time I grew to respect and , uh, the members up there, I really do. I think most are there for the right reasons. And the staff, people who work for the senators and representatives are very serious policy people . So I , I, I learned to respect all that as I became more involved with people in DC, but I was scared for it . I really was. I , I, but I also realize now that there are no different than we are, right. They try to make the best decisions with the best information they can get. And that’s what we tried to get.
Mike: 13:58
Did you ever get lost in any of those office buildings?
Gary: 14:01
Oh, yes . Got lost. Lots of times. Um, you know, I spent probably the first few times mostly being lost , uh , because in order to get around successfully, you got to know good directions. And , um, I, I had to learn some of those directions. Um , that’s how I’ve met. Um, gosh, people that I had not met, but had grown up like Ted Kennedy. First time I met him was when , uh, I was crossing the street in front of the Supreme court, going to the Senate building. And , uh, I guess, and this is happens a lot. Yes. Whenever you’re blind, visually impaired, when you have a cane or a dog people assume you’re not sure where you’re going. Well, I, I was pretty sure that day he, but he put his arm around me and said, where are you going to the Russell building? And he said , well, I’m going there too. So anyway, he offered to be my guide and that’s kind of how I first met him. It wasn’t the only time I met him, but it was
Mike: 15:14
Right. But you didn’t even really need a guide that didn’t at the time, there were plenty of times that you did. So what year was that first visit , uh , that you, that you
Gary: 15:28
Alone alone? I think it was 1993.
Mike: 15:33
And when was the last time that you physically had went to Washington?
Gary: 15:40
Uh , in February, right before COVID
Mike: 15:42
So February of 2020. So for 27 years, you’ve been traveling to Washington on behalf of the American Printing House for the Blind. What was your goal in , in meeting with , uh, congressmen and representatives and senators
Gary: 16:01
To help them understand why we existed and how we used the funds, the appropriation that we get each year
Mike: 16:16
Did the job change. Um , and I mean, in terms of your work in Washington, did it , did it change over those 27 years?
Gary: 16:25
Not drastically, we would make , uh , minor changes. Basically. I started out with just asking for a 15 minute meeting that in those days was pretty easy to come by. Um, and then I would spend the 15 minutes talking about what I would just mention that , uh , the , uh, how we came about as an organization, what we were doing and how the education of a blind, visually impaired person should , uh, should look because we make the products. And , uh, as we, as it went on, we probably changed to incorporate more products , uh, into the discussion because I would just get an appointment. We take a product, I would give them information about who we are and what we do and talk about the products that we make, show a product, demonstrate it, and they would begin to open up and ask questions of most of the people that we talked to had no idea about , uh, educating with products. Um, and so they were pretty eager to learn. Most of them were, they would ask questions
Mike: 17:59
During this time, you know , in the last 27 years that you’ve been, you know, making the, you know, your, your course, you go several times a year. You’ve been going several times a year.
Gary: 18:10
Yeah. Usually six to eight times a week or a year and spend a week here .
Mike: 18:16
And that that’s incredible, Gary, really six to eight times a year to Washington. That’s , that’s pretty, I mean, that’s an ambitious schedule. Um, and of course the federal appropriation through the act has grown dramatically , uh, during that time. Um, and also there’s even been other initiatives , out of the house and the Senate that have raised our funding even more, but technology and this kind of thing. How would you assess your own impact on that funding increase? You think your visits made a difference?
Gary: 18:53
I think they understood more about educating blind and visually impaired students than they ever. No . Yeah , but what’s the impact. I have no idea. Um , you can measure it however you want to measure it, but yes, they, they do know more about us than they used to.
Mike: 19:14
What stands out when you look back over your career at APH , um, what are you proud of stuff?
Gary: 19:22
Um , well, I have to think about that a little bit, cause there’s several things I’m proud. I’m proud of the work that, that we did in Washington. Um, I was around whenever the Museum started and the Hall of Fame and our work with , prison, braille programs, I was around when InSights started. So all of those things , um , I’m proud of because they’ve grown and developed and become part of ADH.
Mike: 20:03
You had great relationships with the other members of , uh , the EEC , the executive committee. Um , Bob Brasher was a good friend of yours. Um, how , um, what, what stands out in terms of memorable moments of your work on the EDC ?
Gary: 20:26
Oh, well that would be one. Um , Bob Fresher, Nancy Lacewell, and myself started the Kentucky Prison Braille Program at the Kentucky Institution for Women in Peewee Valley. I lived near there. I happened to know the warden at the , uh , KCI w because I worked with her husband and WHAS Radio and Bob and I used to ride by, on our tandem bike , uh, many times. Uh, and we talk about, wouldn’t it be nice to start a program? Um , and so the three of us worked on that and started the prison braille program in 2000. And then we started the prison braille network, which was a network , uh , all the prisons throughout the country who were, who had, or were interested in starting a prison braille program , because we found out that , uh, by nature prisons are pretty isolated. And the program in Indiana didn’t necessarily know much about the program in California. So the network reached out and organized that. So we reached out to the different prison, various problems around the country, pull them together and have had a forum , adjacent to our annual meeting each year, since then this year, of course it was virtual
Mike: 22:11
And it has prison, braille , uh, any it’s it’s is , uh , the prison braille programs contribution to , uh , transcription for textbooks. Is that, has that been significant? Is that significant? Yes.
Gary: 22:27
Yes, it has. Because quick history here , um, in the 1950s, through the 1950s and much of the sixties , um , most students who were blind or visually impaired went to residential schools and APH had an publications committee made up of , uh , exofficio trustees who would come in and recommend book titles, book , series, or us to produce each year that worked pretty well through the sixties, and then began to change when the laws changed, students began to go to their neighborhood schools to where now 90% go to their local school districts. And as a consequence, or as a result of that, there are many more book titles needed today. Back in the fifties and sixties, we would make a few titles book series and make many copies of that book. And they would be distributed throughout the country to the different residential schools today. It’s just the opposite. There are many more titles than we could ever produce. So , um , the prison braille programs around the country have grown and taking on much of that , uh, braille production responsibilities. So we work with them and we also do our own so together, hopefully we cover most of the braille needs. And from textbook standpoint, throughout the country,
Mike: 24:18
What made you decide that now was the time to retire?
Gary: 24:23
Well, I’m 68. That was, that was one role or one part of the decision. I think , um, there , the major thing probably is that whenever we had to go virtual, because of COVID that I would, I did not feel that I could be effective with a computer screen in a virtual meeting because the way I operated in Washington was sitting across the table or the side of a member in D.C. I would put a product in their hand. I would talk about braille. I would talk about the product and education, and it became a conversation. Um, I don’t think I could be effective in a virtual presentation, and that played a big role in my decisions your time .
Mike: 25:38
So another casualty of COVID-19?
Gary: 25:44
So
Mike: 25:44
Obviously, I mean, you deserve , uh , I mean, it’s, you’re, you’re worthy of, of , of so much congratulations and yeah, it’s , you know, everybody looks forward to retirement. What are you looking forward to in retirement?
Gary: 25:58
Oh my gosh . Lots of things. Um, you know, I, I love to exercise. I love to read, I tandem bike ride still. Uh , since I was 16 , um, I would like to go, my wife is a, has been a member of a book club for about 20, 25 years. I’ve always been a little envious of that. And I like to read a lot more, most of my reading has been for my profession or APH, and I would like to start reading some of the, I like non-fiction historical fiction. I’m not a big scifi fan, although I would probably read some, but , um , that, you know, those in travel some , um, hopefully someday I’ve traveled a lot with APH and seen many of the things I would like to see, but I’d like to travel with my wife and kids and grandkids, and do more of that together.
Mike: 27:13
What are you going to miss the most about APH?
Gary: 27:18
The people , this company is, is in a lot of ways I’ve grown up and it’s been a part of my family. And I think , um, that working together makes it so , um, I’ve been here going on 35 years now and , and the people I have worked with and , and , uh, hired you work alongside people on, on things that are important and you , uh, you learn to love the people you work with. So it’s the people.
Mike: 28:02
What are you leaving undone ? What work is there out there that, that still needs to be done?
Gary: 28:10
Oh, my, well, for sure, advocacy in Washington, because people are always changing their personalities, the people who roll onto the committee and roll off the committee , the Labor Health and Human Services and Education sub-committees . It’s not a revolving door because a lot of people stay there for a good while, but all the ways there are new people to talk with and to , and , uh, and , and talk about policy in Washington. So that’s, that’s one of the things I think , um, is still undone. Um, braille rail’s important to me. Uh , I had to learn braille when I was 12. All of my textbooks at that time came from the American printing house for the blind. We get questions always about is braille relevant today. And I even got that question in Washington quite a bit, you know, I’ve , I’m I kid when I say it, but I’m mostly serious that I think braille will go away just a little while after print debts . Um, and then it gives me a chance to explain, because people who are blind or visually impaired use every means they can to gain information. I use a computer with speech, a screen reader. I use braille to read, I use audio books, and I believe most people , um , who are blind or visually impaired use all of those methods for learning and information, recreation, whatever any means you can, you can work with. And I think grail is relevant and I hope it stays relevant because it is literacy for a braille reader anyway, a blind person , uh , uh, because if you don’t know how to, well, you learn much more quickly with braille when it comes to spelling, sentence structure, paragraph structure, just literacy and math courses, hugely important. Whenever you can put your fingers on formulas and mathematical equations, things like that, and tactile graphics, tactile graphics are hugely important. And one of the things well, tackle graphics and braille just go together. So those things are still let them down. I think even though more people know about it today, we need to reinforce that every chance we can . So,
Mike: 31:13
So if I gathered together , uh , all the new TVI’s they’re out there in the schools , just about ready to graduate, if I could get them into a room with you sitting in the middle, what would you tell them?
Gary: 31:29
I , goodness, well, their work is important. Uh, I’m uh, I love people who have chosen this career because it’s not easy. It’s not easy to be a teacher. It’s not easy to be a teacher of the visually impaired and ONM instructor. It’s not easy to keep up with the changes that are going on in the education of a blind and visually impaired student . Um, I , um, there were work is hugely important because we all need to be advocates for what we do. And I think TBIs, OEMs , ex-officio trustees are the best advocates we can find. And , um, and it’s important. It’s important work because it has such an impact on the student . Cause you know, I, I mentioned this to people the time in Washington that as much as 80 to 90% of learning has some visual component. And when you don’t have that, it becomes even more important to learn in different ways. And that’s what we have to do. And those teachers and ex officios and administrators are very important piece of that education.
Mike: 33:08
Let’s go back , uh, and put you in a time machine and you get to walk in on your first day and sit down and talk to yourself. What do you tell yourself? Wow. What would you tell that young Gary Mudd ,
Gary: 33:35
Um , not too different than I would tell anybody. You’ve got to be flexible. You’ve got to be prepared to take advantage of opportunities. I had no idea whenever I came here, what I would be doing or whether I would even be here that long, because there are just so many job , um, jobs out there anymore. It’s very unusual for someone to stay in one place for as long as I’ve stayed here. But I think part of it is because I haven’t been flexible. I have been eager to take on different things. Um, the advocacy in Washington, I I’m, again, I would never have known that at the beginning. So be flexible, take advantage , uh , to take advantage of opportunities. And , um, that’s, that’s the two biggest things I would, I would say to myself,
Mike: 34:44
You think he would have listened?
Gary: 34:46
I would probably not, But , uh, I’m glad I had the opportunities I’ve had that’s for sure.
Mike: 34:55
Yeah. So what do you think you’ve learned from being a Vice President? Because that’s a totally different role, right? I mean, it’s, you know, it’s one thing when you’re going to Washington all by yourself, but this whole vice-president thing you’ve had to supervise people and, and , uh, I , and , and so on.
Gary: 35:17
I think the biggest thing that I’ve learned being a Vice President is to hire good people, listen to them and get out of the way. And hopefully you’ve hired experts who know more about the topic than I do. And I try to listen to them and clear the path for anything they think is worthwhile working. Um, that’s, that’s been hard of what I’ve learned is Vice President and to have a, I guess, a bigger microphone to speak to the things I think are important. So those, those are the things that we have learned . Thank you so much for your time, Gary. Thanks, Gary. We appreciate it. We’ll talk to you later. All right. So thank you, Mike.
Sara: 36:15
Now Mike’s back to tell me about his experience. Working with Gary. Gary was a bit shy and talking about himself. So Mike, who has worked at APH for 15 years is here to tell us just how big of an impact Gary has made on APH. What’s it like working with Gary
Mike: 36:34
Three is , um, you know, as he mentioned in his interview, Gary hires, good people and then gets out of their way. And so he is the perfect boss. Um, he doesn’t suffer fools , um, very likely. So, you know, but as long as you do good work and , uh, and , uh, you , you don’t , uh, you make sure that he knows everything that he needs to know in, in dealing with , uh , other leaders here at APH. Gary is the perfect boss. I love working with Gary. I love working for Gary. I’m going to miss Gary .
Sara: 37:13
What is your favorite story with Gary?
Mike: 37:17
Gary is a funny guy in a lot of ways. He is so passionate about education and rehabilitation for people that are blind and visually impaired. And I’ve learned everything I know about blindness , um , working at Gary side, he’s, he’s just , uh, a wonderful teacher. He’s very passionate, but he has also got this skill that I have often lacked. Uh, Gary knows how to play the game. He knows how to, he knows when to push buttons and when not to push buttons, he knows when to fight and when not to fight and so many, many times, and he’ll laugh about this too. If you were to ask him, I will come into his office, all tore up about some minor conflict that I’ve had somewhere in the, in the bureaucracy here at APH and ready to just, you know, burn the place the ground. And Gary will talk me down off, off of that ledge. He will give me constructive criticism, give me great advice. And I mean, that has just been replicated a million times that Gary knows Gary knows when to fight and when not to fight , um, to get the things that he needs done. And he is a passionate advocate. Um, and so he , he, he, he knows when it’s, when, when it’s time to go to the mat and when sometimes you just have to take your lumps and , uh, and get along to get along. And, and I think that’s the thing about him that, that I , uh, I find most admirable. Um, he, he knows how to both be a passionate defender of the things that he cares about, but also not to not to throw the baby out with the bath water.
Sara: 39:06
What are you going to miss most about working alongside Gary?
Mike: 39:10
Well , um, you know, Gary has just an amazing, confident and yet humble leader. Um, he does not take himself too seriously. He loves to laugh. Um, the two of us, when we have our meetings every week , uh, spend half of the meeting laughing. Um, he , uh, recognizes the absurdity of the world. Um, and , uh, um, I’m going to miss him terribly. Uh, he’s uh, he’s just a friend , uh, as well as a coworker and his and my boss and , uh, he’s the best. And , uh, everybody who’s ever worked with him will tell you the same.
Sara: 40:07
What do you wish for him in retirement?
Mike: 40:10
I think he’s going to be a terrible retiree. Uh, Gary is a worker. Um, he doesn’t miss work work Mrs. Ham. And , uh, uh, I mean, I can’t count the number of days where, you know, he doesn’t call in sick. You know, the guy fought through ..he’s a cancer survivor. Uh, uh, I think on day one and a half of his retirement, he’s gonna regret it.
Sara: 40:49
And
Mike: 40:49
He’s gonna wonder what’s going on over here. And he’s going to get involved in something , um , doing good work for some other nonprofit . You watch it, won’t take him long before he’s volunteering somewhere. Uh, and , uh, and there are a lot of places out there that need somebody like Gary , um, as their spokesperson. And , uh , I’ll , you watch it’ll happen. He’ll be a terrible retiree. He’ll be driving his wife crazy. Uh, you, next thing you know, the whole place will be, you’ll have everything organized and, and , Susan will be so tired of Gary trying to supervise him that , uh, she will probably be, be hustling him back to APH. He’ll be, he’ll be over here begging for a job again, you watch maybe at the, of the end of the first week and the second week. That’s, that’s my prediction. Okay.
Sara: 41:37
Is there anything else you want to say about Gary?
Mike: 41:40
Um, yes. One thing , um, Gary underplays, how significant his work in Washington has been. Um, if you just look at the Federal Appropriation between ’93, when, when he made his first visit and 2020, it has grown dramatically and has grown dramatically because Gary went into those offices just as he described and sat down and looked odd to us with our nation’s highest leaders and convinced them that the work that we were doing here in Louisville was important, and that we were partners with them. And he always did it in such a, a humble and yet confident way. He’s just an attractive person. And he was the perfect person for APH to hire as their, as their public spokesperson , um, the right guy at the right time. And , uh, um, I don’t envy the task of whoever is hired to replace Gary to come in and do the job that Gary has done, because he has set an incredibly high bar and has made a true difference in the lives of children and adults who are blind or visually impaired here in the United States. And , uh, he will be the last person to toot his own horn. But without Gary, it’s hard to say that APH would be in his , in his , in a solid of financial situation. As it finds itself today,
Sara: 43:23
He is truly one in a million. We’re going to miss them greatly. We are, we , we are happy for him to go to retire, but we want to be selfish and don’t want him to leave. But
Mike: 43:31
If, what if I could, if I could nail his foot to the ground in a closet, I would,
Sara: 43:38
As we are going to miss carry, but we do . We wish him all the best in retirement and plenty of travels and reading and, and hopefully not driving his wife crazy.
Mike: 43:47
That’s right. That’s right. Good luck, Susan .
Sara: 43:53
This podcast is called change makers and Gary mud is just that from sitting down in front of lawmakers, to creating a program for incarcerated individuals to give back through transcribing braille, to braille tales, a book program partnership with Dolly Parton’s imagination library. Gary is the epitome of a changemaker , and we wish him the absolute best in retirement. That’s it for today’s episode of Changemakers , be sure to look for ways you can be a changed me here this week.
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Speaker 1: 0:01
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Sara: 0:17
Welcome back to change makers. My name is Sara. And today we’re going to talk about the holidays more. So get ideas, traditions, and support. We’re going to hear some great gift ideas for adults and children who are visually impaired in what you can look for when picking the perfect present. Then we’ll learn how to modify traditions to be accessible for loved ones who are losing their vision or have lost their vision. And last while the holidays are usually a fun time indulging with family and friends, it can be bittersweet for those experiencing vision loss, both for the individual themselves, as well as their family and friends. We’ll discuss the services and resources that are available from vision aware and APHS family connect. Then we’ll check in with the connect center. Let’s talk gifts for children with the former director for foundation fighting blindness and distance learning mother of a 13 year old daughter with visual impairments, Lisa Lloyd. Hi Lisa, and thanks so much for joining us today. Tell us a bit about yourself.
Lisa Lloyd: 1:19
I’m from Sunnyvale, California and I myself have X-linked RP. I have a 50% expression, so I became night blind by about 32 years old. My dad is blind due to the same eye disease and my husband and I decided to adopt a child from India that has Leber congenital amaurosis (LCA), and she came home at about five years old. She’s now 13 years old.
Sara: 1:47
Tell us about what a person should look for when buying gifts for a child with visual impairments. I’m sure you’ve got an Eagle . You said you just have a 13 year old, so I’m sure she’s highly opinionated and has ideas as to what gifts are perfect.
Lisa Lloyd: 2:03
Well, she does for her, she , she seems to really like music and that’s always been the case. So Kidz bop CDs is probably one of her favorite things . And I tend to find when I’m buying a gift for a child that’s blind or visually impaired, they often seem to be very music centered. So that’s something that can keep that in mind. But when I’m looking to buy a gift, I’m also looking at that child’s individual interest , which can be so varied, just like with sighted children. But I also want to think about what is their level of vision loss? Are they having partial vision? Do they have no usable vision? Like my daughter, are they a braille reader? Can they read large print? Because that would influence the kinds of gifts that I might purchase for them. And then of course their age, is it age appropriate? Um, I also like to ask the parents what they already have because , uh , that can also make, you know , my idea change altogether about what I’m to buy for somebody. So , um, and also budget. Um, some gifts can cost a lot more money for a child that’s blind because a lot of the items are more specialized. So if it ends up being a little bit out of my budget, sometimes I work together with other family members or friends in order to make the gifts affordable. So , um, so that’s a good way to go as well
Sara: 3:23
For a person purchasing a gift for a child with other low vision or no vision. What should, what should we steer clear of?
Lisa Lloyd: 3:34
So good question. I tend to steer clear of scenes that have lots of small parts, particularly if they’re a younger child and if they can break off and you have to worry about them swallowing the pieces. I also try and avoid some items that have sharp edges, and I try and think about what’s age appropriate for them. Um, let’s see, what else? Uh, this is another thing because a lot of us parents right now are really busy with distance learning. I think about whether or not the gift is one that they can play with on their own, because right now we’re so tapped for time. It takes a long time to distance learn with a child that can’t see. So I think about, are there other people around that child that can help that child? And if it’s a gift for my daughter, I like to have it be something that she can do on her own without me having to be directly involved. But having said that you also want to make sure that the child has some items that are available to them, that they can play with other people like UNO braille cards , um, might be a good idea. Um, we have a tic-tac-toe tactile game set, we have Jenga. So those are some things that a person can , uh , go ahead and play with with someone else. Um, I avoid gifts that are flammable . If I’m sending them through the mail, I just found out that perfume is something you cannot send . And so for like a young teenage girl , that might be a nice idea, but if you’re sending it through the mail, the post office doesn’t allow that anymore. So that’s something else too , to think about.
Sara: 5:09
Lisa, those are all great gift ideas, and APH has some wonderful gift ideas as well from the finger walks to the labor ants that invite you to focus your mind’s eye. As you concentrate on traversing, the twists and turns to the Hoppa dot mat that helps children learn grail while being physically involved in active and for even younger children consider stacking cups, headboards, and lacing beads that help build the fine motor skills. We’ll hear from Lisa again, a bit later in the show to discuss how to modify traditions, to make them more accessible for those who are visually impaired. Now let’s move on to gifts for adults. We have APH Communications Accessibility Editor, Paul Ferrara, and APH Digital Content and Engagement Specialist. Melanie Peskoe. Thank you so much for being here on change makers . What are some good gifts for adults who are visually impaired?
Paul: 6:04
So I think really what we’re thinking about here, u h, there may be some exceptions to this, but a lot of these gifts are gifts that are great for adults and people who are visually impaired h appen to really be interested in them. Like for instance, for me, u h, Amazon is a good friend of mine. We, we, we, we meet quite often, so gift cards for Amazon or a re great. U m, we use different delivery services, so, u h, restaurant gift cards o r things t hat, that, that are really good, u h, portable battery banks, u h, you know, those things t hat, that you can charge your phones with and not have to worry about having the charger with you. U h, those a re, are really good. U h, definitely want to think about iTunes gift cards, anyone that has an iPhone, and you want to buy an app or you want to get some music, iTunes gift cards are great suggestions as well.
Melanie: 7:17
And just to kind of piggyback a little bit on what Paul said , um, you know, right now with , um, the state of everything and not a lot of people want to get out in the stores that much. And so I think it would be really nice to have , um, a gift card for , um, grocery delivery services, as well as for those necessary trips. Um , gift cards for Uber or Lyft are always great too. Um, but I’m thinking about some of the practical things also, like I can never have too many , um, charging cables for my iPhone or those , um, ubiquitous bricks that we have to have for them. Um, also for times when I’m out in the cold, but I still really rely on my iPhone to give me information. It would be great to have those texting gloves, a nice pair of texting gloves that will keep my hands warm and toasty, but I’ll still be able to use my phone.
Sara: 8:17
Yes, Melanie. Now tell us what are , what are texting gloves for those who might not know? Yeah .
Melanie: 8:22
Yeah . So texting gloves are your standard gloves, except that they have these little pads on the fingertips generally on the thumbs and the index fingers that allow you to still provide that touch element to any kind of smartphone. They are wonderful. So , um, I really love the texting gloves. Uh , I love having an extra pair of Apple AirPods laying around, or , uh , one of my very favorites is a little Bluetooth earbud because I rely so much on , um, verbal feedback from my phone. I almost always have a, in fact, I think I have one in now a little , um, or maybe not, but in any case I have a little Bluetooth earbud that is just that tiny little thing that is barely noticeable, but it’s there for me for when I need that verbal feedback. So those are the , a few of the things that I can think of. And , um, and gosh, I’ve got more and, and cashmere sweaters not so bad either. Um,
Paul: 9:31
And there’s an item that, that I just happened to think about because first time I saw it was at one of the blindness conventions and it has plenty of appeal for other people, but it’s called the tap strap. They’re now up to two. So the tap strap too , and it uses taps with, let’s say two fingers or maybe three fingers , uh , and it types letters as you tap. So if you think of braille, you know, you’re using different combinations of the six dots. Well, this is a little bit like that. So you may tap three fingers on one side of the thing and get a certain letter or one finger on each side and get a certain letter. So you have to learn sort of how the keyboard is laid out, but it comes with videos and that sort of thing. And it was initially talked about as a blindness product, but it’s , it’s definitely gone mainstream as an IRA user. An IRA gift card would certainly be fantastic. Um, you mentioned Uber that would also get you Uber eats, which is great door dash would , would be wonderful and food. I, there are a couple of food places. I mean, QVC has all kinds of things, but they have some fantastic food. Uh, nuts.com is another place that I love to frequent for different snacks and foods and things. So , uh, you know, everybody’s different, but food is one of the things that , that gets my attention. So,
Melanie: 11:08
And no list would be complete without the mention of an audible gift certificate. I love my audible books and , and whether it’s , um, you know, audible or Kindle , um, or even Bookshare, you know, these are all accessible book , um, merchants that , uh, many of us take advantage of daily. So we can’t forget that.
Paul: 11:34
And then music subscriptions, I mean, you , I, you could get to any one of the music services out there. So is there anything else you’d like to mention for gifts for adults? I’d be remiss if I didn’t mention our APH insights , art calendars , uh, I have given those to family for a number of years that are fascinated with braille. They love the art that’s on them, and the fact that there’s braille on them , people just seem to gravitate toward things like that. Even if they can’t read the braille, they , they are fascinated by it. They’re great for keeping up with holidays and different things that’s going on with you, even if you can’t see the art. I appreciate the fact that it’s coming in from students and adults that are blind. And I think just a fantastic concept .
Melanie: 12:26
Yeah . And for those who can see the art, it’s just, it’s absolutely amazing. They , they pick some really stellar pieces each year.
Sara: 12:36
Great ideas, great suggestions. And we will have links to some of the products that are mentioned in the show notes. Is there anything else you all have to say any more gift ideas or suggestions?
Melanie: 12:49
Hmm, golly. I, you know, I, I, I just think that, you know, really just put, thought into it and give from your heart, whether it’s , um, time service or a , um, a physical gift, whatever it is. Uh , I just can’t reiterate enough what Paul’s , um , statement about , um, just know the person and give from your heart.
Paul: 13:13
And maybe there’s something that you especially love to do or make, and they can be homemade gifts too . If , if you are a cook or if you are someone who makes and sows different things , uh , if you have a talent like that, that is a great way to come up with a gift.
Melanie: 13:34
Yeah . Yeah. Or teach, you know, teach that person how to do that, that skill or talent that you love, the hobby or pastime.
Sara: 13:46
Thank you both so much for your time. Those are great suggestions, holiday traditions. Do you have any, they run the wide range of baking cookies with loved ones to black Friday, shopping to decorating gingerbread houses when a loved one loses their vision, baking cookies from scratch, running through a store in the middle of the night and decorating a gingerbread house, looks a little bit different. Lisa’s back in here, how she herself made some simple tweaks to her family, holiday traditions. Lisa, welcome back to change makers. And for those of you who don’t know, Lisa has a master’s in counseling education and associates in adaptive fitness, specializing in the visually impaired population and ran a support group for retinitis pigmentosa and other AI-related diseases. But before we turn to the traditional holidays, Lisa actually said, one holiday that’s typically celebrated at night is when many parents noticed that their child had vision problems. Lisa, tell us more. Halloween is one of those holidays that is really for
Lisa Lloyd: 14:52
Young people , uh , who are going blind or visually impaired due to retinal degenerative diseases. So a lot of parents report that the child falls down or trips on Halloween night. And that is often one of the first indicators that the child is losing their vision. Uh, so that’s something that I’ve heard a lot of them talk about. And then that kind of starts the conversation. Um, and , uh, of course, vision loss over time tends to go down with these diseases. So night vision tends to go first and then depending on the eye disease, they might end up going down to like a tunnel vision situation. So I also have RP. And so I have experienced this as well. So I tend to be the mother that stays at home and answers the door for trick-or-treaters , as opposed to the parent that goes out with our blind daughter. Because if I went out, it would be like the blind leading the blind.
Sara: 15:48
How do you modify your traditions? We’re going into the holiday season? How did you modify the traditions or what can parents do or family members do for their loved one that is losing their vision?
Lisa Lloyd: 16:01
Sure. It’s an excellent question. And I , I liked this question a lot because it’s very inclusive. I find a lot of sighted individuals don’t often think about how they can make something more meaningful for their child that’s blind or, you know , left one that’s that’s going blind. So in our family, I’ll mention a couple of our traditions and then how we modified them. We have a card writing experience. Every November, December, we first started off, our daughter was adopted and came home to us blind. So initially I wrote all of the Christmas cards and the Hanukkah cards to our friends who are Jewish. And then she learned , um , English and we had to teach her English and I became a scribe for her. So she could write out cards to family members. And I would just write down everything that she said. Then my daughter learned the critique keyboard in addition to working with the iPad and that program called co-writer. And she started to be able to write her own Christmas cards. I helped her a little bit with the spelling and the grammar. She brought her humor and her ideas to the cards and really made them alive and personalize them. Now she knows the braille notes touch device, which has a step up and she’s able to do almost everything entirely on her own at 13 and a half years old. So those cards , um , after she prints them out, I help her put them in the envelopes. And of course I address the outside so they can be mailed. Um, but if they’re going to people in person , she can write the braille name. And then underneath that, I can write an English, the person’s name, assuming they’re not a braille reader. So that’s for , um , our card writing. We also have a curling experience in our family and , uh, we go out at night and we go back to my hometown in Palo Alto where I was raised and we go Christmas, Carolyn , and we have at least three or four of us in the group who are blind. So we always make sure that we have a sighted guide for each blind individual. We have to practice ahead of time, unlike most other people, because we can’t see the lyrics that are before us in the dark, even with flashlights, it’s hard. So we practice by listening to the radio for a few weeks ahead of time. We get sheet music and at home and the light, or I can see we practice as well. And then when we go out, we make sure we have lots of bright lights on us, and we have jingle bells , um, a tambourine, whatever we can do to make it a little bit more exciting for our daughter. As we walk from house to house, singing Christmas carols, it’s one of our daughter’s favorite themes. And then at the very end, we have a dessert potluck. She loves food. We all love food, especially around the holidays. And so that’s where she gets some traditional food that she wouldn’t get the rest of the year.
Sara: 18:55
So do you have any tips or advice for modifying any traditions?
Lisa Lloyd: 19:01
I would say always keep in mind that you want to be flexible and you want to be thoughtful to everybody in the group. So I’ll give an example. We also do a white elephant exchange on Christmas day. So I always try and get buy-in for my daughter. That’s blind. I have heard get some ideas going about what gift she would like to provide for the white elephant. And then I have her involved in the wrapping up of that gift. And then when we’re actually doing the gift exchange, I kind of level the playing field. I have it be so that when someone opens up a gift, they share what the gift is, and then they rotate it amongst the group so that my daughter can explore it with her hands. And other people can read outside of the box and they can decide if they want to steal it or not. So just being inclusive and thinking about, you know , um , how that person who’s blind will be involved. Another good thing to do is when the food comes up for either Thanksgiving or Christmas to mention what is available, what’s there. And if I forget, my daughter will actually ask me or my dad who’s blind will ask, well, what’s available. What w what did people bring in ? Who brought wet? So we tend to go over that and we have some food allergies. So we also talk about what’s in the dish, as well as who need the dish. It’s gluten-free , this one has dairy in it so that everybody understand . And that’s what I find is when you do something for someone who’s blind, it also usually helps everybody else in the group.
Sara: 20:32
Thank you so much, Lisa. We really appreciate you taking the time out to join us today. That’s great information on how to modify holiday traditions so everyone can enjoy. Now, we’re going to focus on services for a lot of people. The holidays bring together for the first time since last year and seeing older family members, you might notice they’re having vision issues that have only gotten worse since last year and a new prescription for glasses. Isn’t going to help. Where do you turn for assistance when your older loved one is experiencing vision loss? Let’s talk to Chris Rogers from vision aware and what you can do. Hello, PRIs , thank you so much for joining us today. Tell us about yourself,
Priss: 21:13
I have been in the field of aging and vision loss for most of my career, which is over 40 years. So that kind of tells you how old I might be. And , um , I have been involved with , uh , vision aware since its inception. It actually started out as another site called senior side, and then it morphed into vision aware and vision aware has information in it. Uh , that includes information for seniors. So it’s very appropriate that , uh, we do have vision of where that’s all inclusive.
Sara: 21:46
Okay. And vision aware. Tell us about the services they offer .
Priss: 21:51
Okay. Vision aware is actually a website, but when we conceived of it, we conceived of it as being kind of a holistic site that would have information in it that both family members and caregivers and fit and people with vision loss could use to understand about age-related vision loss and what they could do once the person had vision loss. So it includes information about eye conditions, about emotional support, about everyday living and about special things that seniors need to know about as they lose their vision. And even includes a section on working, because we know a lot of older people with vision loss want to continue to work. So in the eye conditions section, for example, vision aware covers information about the, the most common eye conditions that older people with vision loss would experience such as macular degeneration or glaucoma are diabetic retinopathy, and of course, cataracts. Um, then we have in the section on everyday living, when you lose your vision, you need to know what to do. How can you cook for yourself? How can you continue to read? How can you take your medications? All those are basic things that everybody needs to be able to do. And when you have vision loss, it’s really difficult to consider how you can continue to do those types of tasks . So we try to cover everything in the everyday living section , um , in the four seniors section, we talked some about retirement and what it means in terms of maybe you might have to move or think about moving and what you would need to think about or how you might need to adapt your home, to make it a more accessible and easy to get around. Uh , and the working life section. We talk about , um, how you can continue to work, what things you need to know about to, for your work to be accessible to you , um, had to, to your employer, if you’re losing vision, things like that, or if you had a hobby and you want to turn that into a job for the future , um , because you can’t do the work you were doing before, or you don’t feel comfortable doing it. So we cover those types of things in working life. And then in the emotional support section, we actually have a guide called getting started that has all kinds of tips about dealing with vision loss from , uh , every aspect that one can think of. And that’s a downloadable guide, and we can also send you a copy of it if you will go to that section on the website, which is vision aware slash getting started also in the emotional , um, uh , support section. We have information for family members because family members often have just as hard a time on coping with vision loss as the person who’s losing their vision, they don’t know what to do and how does to provide the best support. So the emotional support section has a lot of great information in it as a guide to family members and caregivers. Another piece that we have on vision aware is a directory of services, so that if you live, so for example, your loved one lives in Texas, and you need to find services for that person there. Then you can go to the directory and find those services. So , uh, so vision aware , like I said, is a very holistic site. And we tried to think of almost everything that a person would , uh , want to continue to do , um, when they lose vision.
Sara: 25:18
Okay. So when you’re home for the holidays, what can a concerned family member do right then and there, when they see their loved one in their fishing leaving?
Priss: 25:29
Well, I think, like I said, they need to start working on helping that older person identifies some of the tasks that they’re having a hard problem with. For example, if , uh , they’re having problems, taking their medications accurately, then they can help with that. They can suggest that they can find those rehab services , uh , and say, mom, I’ve found out that in this , um , in your community, there’s a UN agency that can provide someone who can work with you to help you to continue to be able to do these things independently. Uh, I noticed that when you were cooking your pie the other day, that you were having a problem measuring, and there are some special things, products that are out there to help you be able to measure more accurately like , uh, so , uh , I think that the family member needs to do their homework. Uh , so they , they know what’s out there instead of taking over. And I think that’s just crucial is they know that they should not take over for the person. They need to help that person to build their self competence and know they continue, can continue to be independent in their own homes. If they will just learn a few techniques and some , uh, and get some products , uh , special, helpful products that will help them to, to do those things. And another thing in building self-esteem just because a person is losing their vision doesn’t mean they don’t have their mind. And so, for example, if they have been an accountant, all their wives , and you’re having a problem with your taxes, you would still want to go and talk to your mom or your dad about, you know, what could I do? You know, they still have their minds. And so helping that person feel that they have a role to play in the family, that they still have a knowledge base that can be used to help a family member who’s having issues. Uh, I think that helps a lot. And also they can still be a good grandparents . They don’t have to give up their grandparenting and , um, not be able to be around their grandchildren or babysit and so forth because they’re having a vision loss. They still need to be, feel like they’re a part of the family, which they are, and that they , um, can contribute to the family and still be the same person, just because they have a vision loss doesn’t mean they’re not competent. They’re not able to continue to do the things they used to do. They just need to do them in a different way.
Sara: 27:49
That’s great. That’s great. Do you have any other suggestions for, you know, the family that’s watching a loved one experience , vision loss, or the person who’s experiencing vision loss themselves?
Priss: 28:03
Well, I think that one of the things that I didn’t cover and I think is really important to think about is to encourage the relative who’s losing vision to continue to pursue their lifelong interest, but in a new way not to give up. So for example, if they’ve been a knitter, they can still knit. If they’ve gone to church, they need to continue to go to church. Um, so continuing on with life is just such a critical thing. And I think anything that a family member can do to encourage the older person to continue on with their life and not give up , uh, is , is really critical.
Sara: 28:45
Thank you so much, Chris, for joining us, we really appreciate your time for those with young children, APH also provide services through the connect center. Family connect.org gives parents of children who are visually impaired or losing their vision, a place to find resources and support for each other. APH’s ConnectCenter Director, Olaya Landa-Vialard is here to tell us what you can find FamilyVonnect.org. Olaya thanks so much for joining us.
Olaya: 29:12
Thank you, Sarah . I’m so happy to be here to talk to you and your audience about family connect. Um, family connect has been around for a long time. Um, and it used to be one that , uh, one of the websites that was at the American foundation for the blind and a couple of years ago , um, it kinda , it switched hands and now we have it at APH. And so what we’re doing with it is curating the older content that rolled over from ASB, the American foundation for the blind to American printing house for the blind, but then we’re always , um, but we are also , um , adding more information , uh, updated information and of course, more services for families of children who are blind or visually impaired. Um, and so one of the easiest ways for your audience to be able to get to family connect would be just to go to the APH center. Um, I’m sorry, APH connect center.org. And once you go to the APH connect center dot or website , um, you’ll see, you can choose from different , uh, different links to our various websites, but there is a family connect link. So once you click on the family connect link, it’ll lead you to our family connect website. And on this website, you’ll be able to find out information , um, about , uh, uh , overview of some services for children. Um, once you get a diagnosis of a visual impairment , um, from your doctor, whether it’s at birth , um, that you receive that , um , diagnosis , or if it’s one , your child enter school , um, there’s information here that can help you , um, kind of navigate your way through that process. Um, also you can find , uh , information about services that are near you. Um, so we have , uh, an APA, our APH , um, directory of services. And , um, that directory of services has been around since about 1922. So it’s, it’s been around almost a hundred years and of course, way back when, you know , we used to print it and it would be huge. Like if anybody’s told us not to remember phone books, it would look like a big old phone book. Um, however now with the advent of technology, we’re able to , um, how’s it on a website and , um, and , and it makes it easier and more productive and more efficient , um, to have this directory in electronic format and people can keep adding to it every year, every time something new, a new service or organization is available near you to provide you with services or help be there to answer your questions. Um, it can also, which I really think is really, really, really crucial for families who are, especially if you’re new to visual impairments, but even after you’ve been dealing with , uh, you know, the , the world of visual impairments , sometimes you just don’t know what you don’t know. So then it makes it hard for you to know what questions to ask. And so on the website, you can find some , um , information and direction on what questions do you need to ask your child’s doctor that is so important for, for you as a parent to help empower you and to be able to advocate and help your child keep moving forward , um, and, and recognize their abilities. We all can, we all know about the disability, but knowing the right questions to ask can help you really help others , um, in the school setting, especially recognize your child’s abilities and , and make planning for their education from that point of view. So you can definitely get lots of information on that from the family connect website. The other things you can also get is , um, personal stories from other families who are , um, in, in your shoes , um, their stories from the point of view of families who are dealing with having a child with , um, with blindness or visual impairment , um, and stories of families who are dealing, who are dealing with a child who may have additional disabilities , um, in addition to that blindness or visual impairment , uh , cortical visual impairment, of course, is one of the bigger diagnoses that are, that we’re seeing kind of the li it is really becoming the leading diagnosis of visual impairments , um, in our, in our kiddos. And so we have , um, a parent’s perspective on that and raising a child with CVI and how to work with your child’s educational team. So there are , um, there , there are just so many ways that , um, family connect is able to provide you with , uh , information and lead you to services that are available , um , in your area. Um, we also , uh , when you go to the website, you’ll also see , um , an area where you can , uh, at the top and the, one of the , the tool bars , um, you can get to where it says about, and you click on that and you can get to webinars that we have , um, that we’ve already done for family connect, and a lot of these webinars , um, deal with , um, how to help your child , um, at home, especially again, when we’re , we’re doing this at home learning , um, and you’ve got , um, you know, you’ve got your kid, you’re , you’re , you know, either your young child or your young adolescent child home now, and having to figure out how to use their such a technology to help them teach. How do you collaborate with the teacher to make sure that , um, your, your child is still receiving the services , um, that, that they are legally entitled to, and it’s in their IEP. And so , um, we have , uh , webinars that can help you , um, kind of navigate that whole at home learning situation right now. One of the really , uh, really cool webinars that we’ve had for family connect is the homework hotline for students with visual impairments and blindness. So I highly recommend if you have a child who is doing at home learning , um, that you watch that webinar, or listen to that webinar to get information about how to access that, that service it’s free. And , um, it , it is a wonderful service, very unique service that , um , has not been available in the past. And because of the pandemic, you know , uh , necessity is the mother of all invention, the homework hotline for blind and visually impaired students was created to address this particular , uh , the issues that we’re having right now because of the COVID pandemic. Um, and there’s other webinars there as well, like how to use it, the materials in your home to make , um , you know, to, to make , uh, or to help your , your child learn. Um, especially for that early intervention age, early childhood age. There’s so many things you can use in the home , um, to collaborate with your child’s teacher , um , to help your child keep moving forward, keep learning those, those developmental skills that they need to build off of one another. So when you go to the website, that’s something that you will also see , um, th that you’ll have the option to , to go and look at. So you’ll have the option to look at past webinar recordings, but then you’ll also see , um , a listing of the upcoming recordings. Um, and so that , uh , I’m sorry, upcoming webinars, so that that’s something else that you’ll get to see when you , uh, and how you could use the family connect website. Um, one of the , the final things that I will say about , um, about family connect is family connect cannot exist without input from our families. So please, please, please feel free to reach out to us. Um, and you can always email us with any comments or ideas that you have , um, for presentations or for articles to be written, or just information to be put out there. You can email connectcenter@aph .org . And that way we can make sure that we are putting information up there. That’s helpful to you. Um, not only to you, but then to other parents, cause I’m there . If you have a question or idea , um, another parent might have that same question or might benefit from that idea. So , um , please make, take advantage of every of everything that the connect center can offer, but if you’re a parent or a caregiver of a child who is visually impaired or blind, please take advantage of family connect dot or , um, and all we offer.
Sara: 37:29
Thank you so much Elia for taking the time to explain this service that family connect provides. It’s so important for parents to have a place to go for help and family connect.org does just that. And speaking of the connect center, Elia is back to tell us what’s coming up this month.
Olaya: 37:45
Hi, thank you so much, Sarah , for inviting me to , um, kind of let everybody know what’s going on at the connect center lately. Um, well lately we have been busy creating an advisory group for , um, for our, our career connect site , um, and it should be getting going , um, during the first week of December. So we’re really excited about that. That advisor group is going to help us , um, know what’s important to the field in , uh, in regards to , uh , co uh , in regards to transition in regards to individuals looking for jobs and , um , you know , trying to gain some job skills in order to find a job. So we’re really excited about getting that group together. Um, we’ve also had a couple of webinars on , um, virtual orientation services for individuals who are deaf blind. Um, we had about 145 people attend that webinar. So we’re really, really proud and excited about , um, the attendance from that webinar, but also the feedback we’re getting. So , um , be on the lookout for the link for the recording for that particular webinar. Um, of course I would like to highlight the homework hotline. We’ve had a homework hotline webinar, and , um, that is something that is really important. I think for everybody to know about that, that even exists for our students who are blind, visually impaired. Um, I wish we had had that when I was a teacher of the visually impaired out in the field years ago. Um, but now we have that available and I think people really need to take advantage of it, especially during this time of at-home learning , um, during our, during the COVID pandemic. So , um, you know, be on the lookout for that link as well. Uh, we’ve also had a really, really good webinar on social connections during physical distancing, again, important during this time of COVID. Um, now, as far as , um, some of the things we were looking at were running up into the holiday season, so we started focusing quite a bit now on , uh, ideas for the holiday season. And one of the ideas that we’re , um , posting about on our , uh, on the connect center is , um, accessible Santa letter campaign that is being put on by the foundation for blind children and , um, the link for , um, see it our way.org and the link for the actual campaign will be found in the show notes. So make sure you , you , uh , take a look at that and make sure you can get that so that you as a parent or if, or an aunt or uncle or brother or sister , um, would like to have Santa’s Sunday letter to , um, you know, your loved one, then you can participate in this campaign. They instructions will be there online. And I think it’s a really cool campaign that they’re doing and we’ll make Christmas and letters from Santa’s accessible to everyone. Um, there’s also, if you like cooking , um, and like baking during this holiday season, there is actually , um, an activity being put on , uh , called jingle jam. Let’s get cooking with the 12 days of , of recipes. And again, that, that link will also be in the show notes. So we’re going to be putting that on the connect center sites as well. Um, if you like making crafts and , um, you wanna learn how to make a tactile craft that can be , um, used as a decoration or as a career or as a gift for the holidays. Um, you can learn how to make button trees by , uh , Patty stamps.com and again, that as well, we’ll also be in the show notes. Um, do you need any gift ideas that if you’re not real crafty and you’re not good with your hands, you can always buy a blindfolded twister , um, and it , uh, at shop.hasbro.com and , uh , in the search bar, you can just type in blindfolded twister game and it will pop right up for you. So that’s always fun. I know we’re supposed to be social distancing and twister is not a socially distant kind of game. However, it’s a game that you can play at home with the people who live with you, right. So that we can be safe. And , um, you know, Matt , uh, not invite others from outside, but that that’s something to , to, to get us all together and have fun , uh, in the house and , uh, involve and make it accessible for everyone right. Blind or visually impaired or sighted. So , uh , I think that’s an awesome , uh, an awesome option to have as far as gift giving . Um, there is another , um, place, if you’re looking for , um , gifts that are educational, there is a website called creative adaptations for learning, and there you can find accessible , um, flashcards bro , alphabet cards, bro , counting cards. Um, you can even find no cards, greeting cards that are , um , tactile and accessible, shaped, and rhymes books, touch and learn activity books. There are some , um , um, some other Pathfinder cards or just all kinds of really neat , um, accessible educational activity, things that you can purchase for your , um, for anyone who you think might benefit from this. Um, and they’re all accessible. Um, we also have a couple of webinars or really one webinar that’s going to be put on by the APH connect center. And that one is titled unwrapping the wonder discussing low and high tech gifts for adults who are visually impaired. And so , um, you can go to the APH connect calendar and you can see how you can register for this. It is scheduled to occur on December 2nd from three to four 30 Eastern. And , um, please, please, please visit the calendar, find December 2nd. And that way you can register for this, I think is going to be a really good webinar to kind of give you ideas about , uh , what gifts are out there for you to purchase or how to make some gifts that you do purchase accessible for , um , the adults in your lives, who are visually impaired or blind , um, or if you are blind or visually impaired yourself and would like to purchase gifts for other people in your life. The ideas there will be ideas discussed on that topic as well. Um, one of the other webinars that we’re going to be promoting on our website is , uh , being put on by the national organization of parents, of blind children. And , um, their webinar is about , um, and getting advice from other parents about what toys , um, your blind child will enjoy playing with. Um, and then also how to make toys that you may go and purchase off the shelves accessible for your child and that information as well. The link to that webinar will be , um , in the show notes, but we will also have that on the community calendar , um, through our APH connect center calendar. Um, and so let me just make sure that I didn’t miss anything. Oh, one more thing. Um, we also have a webinar scheduled , uh , called blind kids just want to have fun. And so that webinar is also , um , scheduled for December the second. And , uh , it will also be listed on our community calendar , um , the connect center calendar, but we will also have the link to that in the show notes, so that if you want to take advantage of learning about , um, summer camps for your child who is blind or visually impaired, you’d be able to get to that link and register for that webinar. Um, I know we’re , I’m talking to summer and that’s six months away. However , um, we need to start thinking about summer camps, right. And getting our kids registered and finding one that works for them. So please, if you have a chance to join us so that , um , there’s lots more, I can talk about Sarah , but I know I’m , I get up . I can go on and on people know me, but I will stop there. And I hope that this information has helped , um, the listeners , um, get, you know , some good ideas of where they can , um , go to find ideas , uh , about how to make this holiday season
Sara: 45:45
Fun. Thank you Olaya for joining us today. And while this year is short, a look and feel drastically different due to the pandemic, you can still find ways to make the holiday season special and even start new traditions that show that while we are apart , we are always together. That’s it for today’s episode of Changemakers . Be sure to look for ways you can be a change maker this week.
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Jack Fox: 0:01
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Sara: 0:17
Welcome back to the makers . My name is Sarah and today we’re talking about CVI, also known as cortical visual impairment and the latest news and information CVI is the most common cause of permanent visual impairment in children. And after a diagnosis, many questions include how did it happen? Where do I go for help and support what devices and instruments can help when it comes to learning? Well today we have three exciting guests, national director of outreach services for APH, Leanne Grillot, CVI content, and community manager at Perkins school for the blind, Rachel Bennett , and consultant for students with CVI, Diane, Sheline. First, we’ll talk to Leanne Grillot to explain CVI and answer some common questions she receives. Then Leanne will talk to Rachel Bennett and Diane Sheline about the latest sources of support and potential products that assist those with CVI. After that, we’ll hear from the ConnectCenter. As usual, we’ll include links in the show notes. Leanne , thanks so much for being on Change Makers. Let’s give our listeners some background information about CVI. What is CVI ?
Leanne: 1:24
Well when a person has a cortical visual impairment CVI, the part of the brain that interprets signals from the eye doesn’t function correctly, the brain is inconsistent with understanding and interpreting information CVI often co-exists with ocular visual loss. So their eyeball might or might not be functioning correctly.
Sara: 1:45
How is it diagnosed?
Leanne: 1:48
Is typically diagnosed by a medical doctor, ophthalmologists and neurologists are the most qualified medical specialists to make this diagnosis, but you might also be in a state where an optometrist is allowed to make the diagnosis of CVI.
Sara: 2:02
How does it occur?
Leanne: 2:04
Well, the major causes of CVI are asphyxia, prenatal hypoxia, ischemia, or a lack of sufficient oxygen in the body cells or blood. So not enough blood supply got to the brain, also developmental brain defects, head injury, hydrocephalus, and also infections of the central nervous system, such as meningitis or encephalitis.
Sara: 2:29
Is it a complete loss of vision?
Leanne: 2:32
Well, the degree of visual impairment can range from severe visual impairment to total blindness. There are some common characteristics about visual function for these children, but the vision always seems to appear to be variable both minute by minute and even day by day. Many students with CVI use their peripheral vision more efficiently and effectively than their central vision. And another common comparison is that we often, they have Swiss cheese effect to the vision there’s blotchiness with what they see,
Sara: 3:04
What research has been done?
Leanne: 3:07
Because cortical visual impairment is the most common cause of vision loss and children in developed countries, there continues to be an increase in research. This also means that there is current research being shared all the time. So currently you might go and , and check the sites for current research and you would find topics such as the benefits of decreasing visual clutter or using an iPad for communication. It could also be about remote instruction for students with visual impairments or the impact CVI has on their motor development. And also you might see long- term outcomes for students with CVI.
Sara: 3:45
Is there anything else you want to share with us about CVI?
Leanne: 3:49
Visual impairment has been around a long time. So just the name or the title or the identification. It seems to have become more fresh within the last 20 years, but students with CVI have really been with us. And there are many new things about this development. That means you really do have to stay on top of the research and really start talking to those people who work with students with CVI to have a better understanding of what’s available for those students.
Sara: 4:21
All right. Thank you so much, Leanne. Now Leanne is going to chat with Rachel Bennett from the Perkins school for the blind Perkins is the oldest school for the blind in the United States. And it’s also where Anne Sullivan honed her skills. Take it away. Leanne ,
Leanne: 4:35
Thank you Rachel for joining us, I would like if you could take some time to tell us just a little bit about yourself and how you became familiar with CVI and with Perkins.
Rachel: 4:46
Absolutely. It’s so wonderful to be here. Thank you so much for having me. Um, I really appreciate what APH has done for the blind and visually impaired community for so long. Um, you know, my son has so many products from APH right now that he’s using the big board and this lamp board, you know, all the goodies for children with CVI. So thank you. Thank you. I have to start there. Um, Oh , how did I get to where I am? You know, it all starts with my son, Henry. He is eight years old. He has critical cerebral visual impairment as well as other ocular conditions, including pretty severe nystagmus and myopia and um, optic nerve atrophy. So he has a really complex , uh , complex visual impairment profile. Um, and you know, when he was born, he was my first. So, you know, I didn’t realize that shaking the eyes wasn’t normal at three or four months. And so that’s what really started our journey of going to pediatric ophthalmologists and getting MRI and just the whole gamut and slew of specialists that you start seeing when you have a child that’s not meeting milestones and you realize that you have a child with very special needs. Um, he was failure to thrive for most of his life until he was about three. Um, you know, he didn’t talk until he was three and a half or so, or he didn’t walk until he was over two . So, you know, a lot of those , um, delayed milestones and the whole , um, journey of trying to figure out what was going on with him. And he was a kind of a mystery to a lot of the medical professionals and educators, you know, I just thought he was this unicorn, you know, but we realize now he’s not. Um, you know, so we saw pediatric ophthalmologists neurologists . We had three different visits to the national eye Institute at NH . Um, we, he had three different teachers of the visually impaired and teachers of the visually impaired and no one ever mentioned CVI, no one ever talked about it. Um, and I had so many questions about what I was seeing in a widened. He looked at me, why didn’t you recognize me when I walked in the room? Why do you trip over everything on the floor? Why didn’t he look when he was eating? Why did he only love this yellow bus? Why did he not want to read or look at books or look at the screen? Um, all of these things that I didn’t have answers to, and it wasn’t until , um, he was about four and a half or so that , uh , an IEP meeting, you know , um, a TVI who was just observing him for another reason. And our school districts said , you know, he has characteristics of CVI and I’m like, well, what’s that? And they all looked at me like I was crazy. I’m like, I’ve never heard of it . Um, and so that’s where this whole journey began. Perkins has always been a leader in CVI education. Um, and they’re always my go-to when there’s a new webinar, when they’re highlighting a new , um , a specialist , an expert about CVI.
Leanne: 7:41
I hear that Perkins has a new resource called CVI now. So what kind of, what can you tell me about it? What does it include? Who is it is designed for?
Rachel: 7:51
It is a website that is geared towards CVI families. It is an inclusive, vetted current to website where you’re going to find current information, current research, and you’re going to really find as a parent, you know, the basics of what Siva is and how to get diagnosis and what to do after diagnosis. But you’re also gonna find some really great articles about CVI and communication and CVI. And, you know, for example, a recent one , Steven Halloween, how does CGI affect kids access to Halloween? So it’s going to be parent-friendly articles. It’s also going to be some really in-depth understanding CVI articles. We just had a recent profile of Dr. Barry Cran, who works at the Perkins low vision clinic about how he evaluates canvas CVI. You know, we need the medical community to really step up, to start diagnosing. Cause that’s a huge, huge barrier. You know , um, medical providers, ophthalmologists optometrists are really the gatekeepers for our kids because our kids can’t get a diagnosis. They can’t get access to services that they need. So we want to build that awareness and, you know, it’s just getting started. I’m the content manager there. So I’m in charge of writing most of the articles and interviewing experts. I mean, it’s like every CVI parent’s dream. I get to talk about all of the leading experts in the field. I just pinch myself because it’s very rare in the world that you can align such a personal passion, passion with a career. So I’m really excited about that
Leanne: 9:15
There services and supports offered by CVI now beyond the website. Yes?
Rachel: 9:21
Um, so along with the website, we have a CVI now parent Facebook group. Um, we have over 500 members already, which is really exciting. And they’re parents from all over the world, their parents who are on all different levels of their CVI journey, some who just learned about CVI, some who are, you know, really big parent advocates about CVI and are having some really rich discussions. And so I’m the community manager for that as well. And you know, it’s a place where we all, I mean, CBA parents, we all have burning questions all the time and we want to get the answers, but it’s really important that we get really comprehensive and accurate answers as well. And so I’m just so happy that we can cultivate that with this Facebook group, because if I don’t know the answer, I can go and ask the, ask the experts and report back, you know? And so you can really think about , um, the questions you want to ask the , hopefully get the answers you need. And then also just start having discussions about topics that we care about. What’s been really exciting is that we’ve started to do , um, live virtual events through the Facebook group. So we have experts come on, zoom, and then you can do a live feed from zoom to Facebook. And so parents can listen to it, live and ask questions. In real time, we had one recently about CVI remote learning. Um, and then we also had one about CVN communication , specifically talking about augmentative and alternative communication and the comments and that for that , um , event was so great. I mean, parents were asking questions and then they’re also answering each other’s questions. And it’s just a really nice, you know , um, really nice way for parents to get access and to have a real conversation with experts in the field. Um, and we want it to be informative yet relaxed so they can really dive into what they what’s important to them and their child. And then we have a whole , um , plan for events coming up. So the parents, if you’re listened to this , um, join the CVL parent Facebook group, and this , these events will always be recorded and posted on to the main website for CTA now.org . So you can share with, you know, your child’s team and such, but , um, you know, if you’re part of the Facebook group, you can just ask those questions in real time.
Leanne: 11:22
So I have a question. Can anyone join the Facebook group if there’s a teacher of the visually impaired listening or a student in a college program listening, how is that?
Rachel: 11:32
It’s just for parents right now. It’s a parent only group, but again, those , um, those events are posted on the CDN now , um, webpage, so that you can watch the recording.
Leanne: 11:43
The recording is open for parents and students in TBI programs. Yeah,
Rachel: 11:48
Yeah. And you know , CVI now .org is a really responsive site. And so I want to make sure, you know, whatever topics that parents are really talking about, that we’re going to put some content on the site about that. So it’s really current, it’s going to , it’s really responsive. Um, and you know, I, I want to talk to as many people who are working with kids with CVI as they can just to get all the insights, all the perspectives , um, that wouldn’t, we wouldn’t necessarily hear about. So it’s a really collective inclusive space , um, as a way to keep the conversation going to move the field forward. There’s so much we need to do. And I mean, I have big plans for this site. I want it to be, we know, create CFA , not an org for CVA professionals, for medical professionals, you know, so there’s a lot of big things come in. We’re just getting started.
Leanne: 12:40
So Rachel, is there anything else you’d like to add?
Rachel: 12:43
Yeah. Thank you. And , um, I just really want to emphasize that every kid has CVI is unique. There are no one size fits all solutions or interventions, and you really see this as a thread on CVI now.org, that assessment is critical. You know, our children need a whole suite of assessments, vision-based assessments or functional divisional assessment. Um, they need CVI specific tools that include the CVI range, Dutton’s inventory , um, ELs or tuberous , uh , CA screening. Um, there’s Matt Tiejin’s complexity framework and 2d image assessment. I mean, there are a lot of , um, diverse assessments out there for kids with CVI and they need to all be used for our kids. Um, and we need to understand that there are promising practices to work with our kids with CVI, but every single kid with Siva has their own unique vision, has their own unique profile. And what CBA now.org really helps the reader understand is how to use a whole child approach to really, truly meet the needs of our kids. You know, even if a kid, for example, might have the same, a CVI range score, their interventions are going to look very different depending on the unique needs, you know, w any other complexities, any anything. And so I think it’s really important that we start cultivating this whole child approach to ensure that our kids with CVI can really thrive and fully access their work .
Leanne: 14:06
Thank you so much, Rachel. That was great.
Rachel: 14:10
Now, Leanne , will talk to Diane Sheline, consultant for students with CVS .
Leanne: 14:17
Hello, Diane . Welcome. So glad to have you with us today.
Rachel: 14:22
Well, I’m just absolutely thrilled to be here with you today, and I can’t wait to dive into our topics that we’re going to talk about.
Leanne: 14:31
So tell me a little bit more about yourself and how you got involved in working with students with cortical visual impairment.
Rachel: 14:39
Well, you know, I I’ve been in the field working with, as a teacher of students with visual impairments since 1979, 1980. I was , uh , I received my master’s in special education , uh,
Sara: 14:52
In the area of visual impairment in San Francisco, California under the guidance of Dr. Phil Hatland at that time, who many of us know and, and love dearly. Um, and , uh, uh, from then I, during that time, we didn’t really, you know, separate out or do anything different with our kids that were cortically visually impaired. In fact, they weren’t even called cortically visually impaired at that time. Anyway , um, I had a special interest in working with little ones and I’m sure I had quite a bit of time spent with kids that were cortically visually impaired. And in those early days, looking back on it, I probably didn’t do a , a really terrific job knowing what I know now. Um, but anyway, how did I get to it? Uh, after years and years of teaching in the field , um, we went overseas , uh, first to Dubai , um, with my husband’s , um, uh, uh, work. And then we were in Saudi Arabia and soon after , um, uh, about 2001 soon after 9/11, in fact, we were transferred back and in 2002, we came back to the United States and I picked up where I left off in the area of teaching , uh, visually impaired children , uh , much to my surprise, finding my caseload quite weighted down with children, with diagnosis of cortical visual impairment. So I jumped into action learned as much as I could back in those early days, 2003, 2004, took as many courses as I could through dr. Roman , um, and , uh, really , uh, worked on a lot of figuring out what worked, what strategies and techniques and materials worked with this population of students and , uh, uh, developed a website to share. Some of my strategies started doing a lot of training of , uh , parents and teachers and , um, uh, and then , uh , uh, not only, you know, built up my website, but wrote a book mostly on strategies. And then , um , now just recently started a YouTube channel , uh, that can be found@youtube.com backslash strategy to see, and , um , put a lot of my strategies in there, but I do use a lot of APH materials. So , um , oftentimes I’m going through them and talking about them , uh, quite , um, uh, enthusiastically and people think I’m a sales person for APH, but I love their materials. So , um, that’s kinda how I got started really in the early two thousands.
Leanne: 17:38
Well, let’s dig into that. So you, you have some APH products that you use with students with CVI. Tell me more about those.
Sara: 17:47
Yeah. I, you know, I have a lot of that I use, but I guess I should focus on the ones that I feel are a must have , um, for , uh, teachers, for parents, for anyone working with kids with cortical visual impairment. And the first one that I would say that is an absolute must. And I mean, I carry two or three of these anywhere I go, it’s an invisible word, an APH invisible word . And , um, that is because our students, particularly when they’re visually functioning in phase, one of the CVI range really need a strictly controlled environment. And what the invisible art is, is it’s a force four panel board that , uh, in fact, let me tell , say the dimensions, because I think that’ll help our listeners , um, understand the size of it. It’s 48 inches by 30 inches in size, and it’s a double sided. Uh, well, it’s , uh , uh, a quad four sided board that folds up and you can carry it in a caring sack and it’s black hook and loop compatible fabric on one side. And so it just creates a very non-complex background. Difficulty with complexity is very , um, a very real thing with our students with cortical visual impairment, not only in phase one, but in phase two and in phase three. So you really end up using the invisible word . Um, uh, very, very often , uh, no matter whether they’re in phase one, phase two or phase three, but especially when they’re in phase one, because you want to block out all of that competing visual input that is in our environment all around us. We want to be able to block that out so that the target you show them really stands out and really pops. And, and especially in phase one, it should be a single colored target. I would recommend that it be carried , uh, in any , um, evaluation purposes, whether it kids are , um, uh , functioning at the phase one , uh, and of the CVI range , or even up into the phase three. And because when you present a very , um , challenging or complex materials or doing a very complex motor task, our kids oftentimes need a less , um, busy environment and putting up an APH invisible word really helps the all in one board. I always have the all-in-one board with me, and that comes in two sizes, a personal size that will fit on a desk or on the tray of a wheelchair tray or a larger size, which is the original size. I have both sizes. I use both , um, uh, you know, equally often with our little ones. I often use the , um, smaller , uh , student personal sized one, but that invisible board hat , or excuse me, the all in one board has a black hook and loop compatible side, and then it can be flipped and you’ve got a white, dry erase board size. That’s also magnetic. So it has a variety of uses. I pretty much , um , use a very, very frequently the hook and loop compatible size side. And again, that invisible, it has a hook and loop side as well. And then the third thing that is in this area where it really blocks off competing of visual input , um, and that complexity of the visual environment is the tri-fold board. And that’s also available through APH.
Leanne: 21:40
Yeah , I know that you’ve done quite a bit of work, also assisting people understanding how the mini light box and now the new led mini light boxes helpful and how it might be used with students that have to go in certain positions. Can you talk about that?
Sara: 21:54
Yes. I I’d be happy to talk about that because again, the light box is another one of my favorites, oftentimes , um, teachers and maybe even parents feel that the light box is something that is only used with kids in phase one. Uh , well , I have to tell you, I use it in through phase two and up through phase three as well, to help with certain , um, or maybe orientation and mobility. I will use it as the background to , uh, my symbols that I’m using for an orientation and mobility lesson say. Um, so it’s not just , uh , a , a tool that is used with kids in phase one. Uh, you know, I sort of , um, compare it to the use of , um, an iPad, which , uh, is wonderful for kids in phase one, but can be used for kids in phase two. And for phase three, the light box I feel , uh , is one of those tools that can be used all through , um, uh, with any student, no matter what their level, just to help bring attention to the target and make it really stand out. And there’s lots of ways to do that with the light box . Uh, and, you know, I’m most familiar obviously with the , uh , standard yellow light box, the big one, and with the mini light box that kind of come in a gray bluish color, but now , uh , we have the new led mini light box that’s out that , um, uh , unfortunately I don’t have yet, but it, I have been, you know , privileged to be able to work with it and play with it at a couple of seminars and , and , uh , workshops that I’ve been at , uh, APH has let me play with it and use it and try it out. And I absolutely love it. It’s just really, really fantastic. I think that it a lot of really great features. Um, now with it in particular, I have to bring up , um, that it can be used with a , uh, different mounts. The Mount mover has a quick release plate. It can be used with, or a clamp on Mount Mount. And , um, APH gives several , um, directions and instruction how to use these different , um, uh, um, mounts that you can use with the tray. So it can be positioned in the student’s best field of view. And, you know, considering the student’s best field of view is one of the 10 visual and behavioral characteristics of the CVI range. And just as I was talking about, reducing complexity is huge with kids all the way through the CVI range and, and use of the invisible board is really helpful for doing that. The use of the light box hits several areas of its visual and behavioral characteristics, particularly that need for light and , um, visual field preferences, because now it can really be positioned well using these different mounts, and we can put it in the student’s best field of view. Um, the other thing that I just love about the new , um, uh, led light box, and I think that this also can be used on the old ones, if you do have the old ones, is that it now has this magic ledge. That can be that’s clear see-through that can be , um, uh , stuck in the little Ridge. And I’m probably not using the right technical terms that APH would like, but it’s this little catchy Ridge that’s in the , um, built on the light box and you can put this ledge on it that will hold materials like the light box materials, the cubes, the shapes. Now you can put it up at an angle for our students and in conjunction with that clear see-through ledge, you can now put materials on it and they will stay put not only that, but wait, there’s more, they have a , uh, a translucent piece of Dyson. And if you’re familiar with , um , work that OTs and sometimes PTs use, they will take Dyson to help hold a plate or a cup in place on a tray. Well , um, now we’ve got this translucent , uh, see a light comes through a piece of Dyson , um , that you can stick on the light box and , um, uh, it, it will hold things in place like the mini light box or the, excuse me, the light box materials, the shapes, the triangular shapes the circles.
Leanne: 26:35
So what are some other devices that you’ve used from APH with students with CVI ?
Sara: 26:40
Well, I’ll tell you what I am taking a , uh, um , a literacy class right now through Perkins. Um, and , uh , it’s absolutely fantastic. Judy Endicott is the instructor, and I’ve been getting so many ideas and getting so excited. And I know that this has been out for a while , but I really, really love the CVI book builder kit. And I’ll tell you the reason why , um, the book builder kit , um, when you order it as a kit, and I would recommend that you do that. You can order the individual bits and pieces as refills, but if you’re not familiar with making books for kids with cortical visual impairment, I would order the kit to begin with. Uh , and the reason why is it become , it comes with loads of ideas of how to make books in addition to different GEs that can be used, and all of them are black. And , uh , again, that pulls in that need for reducing complexity and difficulty with complexity that our student has an , um, by using a black page as a background that really reduces complexity and makes your target pop, whatever you put on that page. So they give you different types of ways that , um, pages can be paid to be just made in black paper , um, or black card stock . Um, it comes with , um, fabric pages that are that hook and loop compatible material. And , um, I’ll talk a little bit more about that one in a second. It also comes with ages that are black magnetic pages. So they’re , uh, you know, you could, you could use them with magnetic different things. It also comes with , um, uh , 16 black kind of a poly blend page. You can try that out and, and then it comes with some page protectors and some , um, binders that you combine the men and ties that you can , uh, uh , make a binder with and then all of these different , um, uh, suggestions and ways that you can use them , uh, with that guidebook . So , um, I think that it’s important to try out a variety of different types of pages and really take a look at that guidebook to get some ideas. Um, but then , um, you know, what, what are some other ways that you can put in? You’re probably thinking right now, well, why would you need magnetic pages and, you know , hook and loop well , um, how I do it and, and the ones that I like the most are the , um, uh , hook and loop compatible pages. Uh, and I have probably the last available in the United States. I have something called , um, Velcro brand picture paper, and it used to be available. And I’m sorry, folks. I have bought it all up, whatever was out there on eBay. I’m always checking to see if it’s out there and I buy it. So , um, I run the Velcro paper through my , uh , printer, my color printer, and I print off pictures for that hook and loop. Of course you can use also just the standard hook and loop , uh , little squares that , um, oftentimes you get with a lot of APH materials and you can put that on the back of pictures as well, and put them in the book, then you’re probably thinking, well, what about those magnetic pages? Well, you can also order , uh, ink jet printable sheets that will go through the , um, the , uh, uh, your printer as well. Uh , an inkjet printer and print off those crisp, clear , uh, color images of those that student’s favorite, familiar, realistic items is what you would start with and do keep in mind what types of pictures you print off and what Le where your student is visually functioning on that CVI range, because you do in the very beginning need to keep it very simple. And our kids oftentimes don’t recognize images until they’re well into phase two. So do I have a good understanding of that? You can attach your magnetic little pieces to the back of objects as well. Um, uh, or the , um, uh , Velcro hook and loop , um, types of pieces to the back of objects and put it in those pack paces pages.
Leanne: 31:07
Well, I definitely have to say, thank you, Diane. You’ve given us lots of ideas of different products we could use. And in some ways, maybe ways we didn’t think about using them.
Sara: 31:16
Yeah, sure. Got to think outside of the box.
Leanne: 31:20
Definitely do. Definitely do.
Sara: 31:24
Now, we’ll hear from Olaya Landa-Vialard with APH’s ConnectCenter. The ConnectCenter incorporates FamilyConnect.org, CareerConnect, VisionAware.org and BrailleBump .org . These services are geared for all walks of life, Olaya. What’s new?
Olaya: 31:41
Um, my name’s Aliah land of the Lord, and I’m the director of the APH connects center. I’m very, very happy to be part of this podcast today, just to give you some exciting information as to what is going on at the , um, at our connect center, we’re really, really busy, and we’re really excited to be able to say that we’re really, really busy. Um, what helps keeps us keep us really busy is partnering with the field and different organizations and entities that are out there who want to help us provide more services to the field and to our children and to our family members who are blind or low vision, or have a visual impairment. And so we have exciting things that we’re doing with community partners. Um, for as an example, we have developed some webinars with our AER , um, local chapters or state chapters. Um, and so if you, part of a chapter in your state and you have something that you want to share , um , and want to make sure that that information goes beyond just your AER chapter in your state, please email or contact the connect center at , uh, connect center@aph.org with any ideas or , um, you know, for partnerships or any ideas for webinars. And then we’d be more than happy to work with you and try to get your information out there. Um, we also , uh , partnered with the Illinois school for the visually impaired and their early intervention outreach program. And with them, we’re doing a series of webinars , um, dealing with early intervention , uh , visual impairment out, which is something that is really unique and that we don’t have a lot of that type of information being , um, you know , shared right now in the field. There are some entities like TSBVI and Perkins. Uh , but we also are now trying to make sure that APH is providing information about that very important timeline in our kiddos lives when they are just starting to learn how to, you know, while they’re during their development while they’re an infant and their toddler. And so we really are excited about that webinar series that we actually started back in October. So we have , um , a webinar for that series once a month, every second Monday of the month is when we’re what we’re shooting for. And so to find out about the dates and the times of those webinars, you can always go to family connect.org and look up that information. Usually we have it in the swelling banner at the very top. So it’s something you can get to right away and , uh, you know, sign up for those webinars. They are appropriate for families and for providers. So we really look forward to having you join us. And we also have a partnership with the national eye Institute for vision aware, and the website for vision aware is vision aware.org. And there you can find information about eye conditions. We are also , um, partnering with , uh , a nurse like nurse consultants to talk about diabetes since this month is diabetes awareness month. And so if you visit, if you visit vision aware , um, you can get more information about managing diabetes with a visual pyramid. Um, we also have a webinar that we are putting on for diabetes awareness month. Uh, that’s going to be happening on November 30th from three to four, o’clock Eastern, and it’s going to be about monitoring your blood sugar and insulin when you’re visually impaired. So we have some blogs that are also going to be coming up , um , regarding diabetes and management , uh , while you’re visually impaired or blind. And so that information can help you yourself, or you may be able to help you help someone else in your life who is dealing with diabetes. And it may be in the middle of losing their vision because of diabetes, as we know, diabetes can cause diabetic retinopathy. So , um , the eye issues and diabetes issues can go hand in hand. And so vision aware is setting themselves close up or so we’re setting ourselves up to provide information to help you, you all out there as well. We also have a partnership with society for the blind and their program coordinator for careers plus Richard Rueda and they are based in California. And so what we’re doing with them is a lot of , um, uh , we have a lot of projects going with them on , uh , career connect. And so to find out about some of those projects that we’re doing with , with society , for the blind, you can go to career connect.org, and you can find out information about the national transition conversation that we are , um, that we are implementing and happens every quarter. And if you go to the website, you can find more information about that. We’re also setting up a listserv , uh , for , um, for transition , um , transition minded entities , uh , or an organizations to join. And , uh , you know, talk about the services that you provide , uh, how you’re providing those services during the time of COVID, which is a really, really important topic at this time . Fine . Um, and so we, you know, we have that partnership as well. Um, one of the other really big things that we’re trying to assist with in the field , uh , we’re trying to really help American foundation for the blind, with their access and engagement study. Um, and the reason that is so important is because that particular study is, is wanting your boards to be heard about how your services for your child have been impacted during this time of COVID because of us having to go to online education, distance education, you know, the, the social, the social distancing measures , uh, those are the things that are impacting the way our children are . Your , our students are getting their services. And so if you go to family connect.org at the very top , uh , in the slider, you will, you will see how to access that survey. And if you can, if you get to that survey, please be sure and take it and let us know how this time of COVID and the way we are having to provide services, how that’s been impacted. Um, it’s really important for us to get that information. So if you will, please, that is one of the big things also that we have going , uh, as far as partnership and engagement. Um, one of the other things I want to stress is that we have a community calendar. And if you go to the APH connect center.org, you can view the calendar. Not only can you do the calendar for events that are happening in your area, but you can also submit events that you want everyone else to know about , um, on that calendar. So when you go to , um, the APH connect center.org website, it’s really easy. You can scroll down and you can click on view the calendar. You can do it in list format, or in month format. And then right next to that, there, they submit your event button. And so you can always submit your event as well. And so we really ask for about a week or two lead time, if possible, if longer is better. Um, but if not at least that long so that we can make sure that we have all the information that we need to put your calendar event on the calendar. And that gives us time that if we do need information or additional information from me, we can work with you, contact you and get fill in those , those blanks, and then be able to get your event put up on the calendar. Um, one of the other things too, we have our directory of services. And so if you are not in our directory of services, there is a way for you to do that. And so if you , um , go to our APH connects center.org website and search for directory of services, it’ll take you to the directory of services page. And on that page, you can actually add your organization to the directory. And that’s really important because we have an information and referral line. And the phone number for that is +1 800-232-5463 . And when people call the information for a line, the first thing we do is go to our directory of services to see how we can find , um, uh, assistance in your area , uh, or you know, of the United States. And then if we can’t find help through the directory of services, then our information and referral line coordinator Alan level then goes digs deeper, does more research to try to find help for you , uh, in your, again, in your area, your neck of the woods. So please make sure and take advantage of that service that we provide through the APH connect center. One of the other things I wanted to mention, we have some webinars that are coming up , uh, on November the 12th, which is tomorrow. We have , uh, Barry Jones who is an award-winning , uh , sports caster . She used to work for the big 10 network. She’s also an award winning author. And most importantly, she’s the parent of a, of a son who has , uh , who is blind. Um, and he became blind from a tumor when he was seven years old. And so she’s going to talk about her experiences, raising a child who was cited and then became blind and how she navigated through that process. And now he’s 22 years old. And so he’s also going to be joining her on the webinars . So I think that’s going to be a really fun and interesting one for people to , um , take advantage of and learn from Bureau. We also have the same day on the 12th in the evening, supporting social connections during physical distancing, especially again, during this time of COVID, you know, people are looking for permission , how do we do that? How do we , um, help support those social connections for our students, which we know is part of the expanded core curriculum as well. And so we have , um, we have some experts who are joining us to talk about how, how we can do that, how we can keep our students, our children , um, socially connected. And then we have on the 16th, the early intervention, visual impairment series, where we are , uh , talking about supporting sales skills. Um, and so we’re really excited again about that, because again, with these partnerships that we have with all these webinars that we have, we’re able to provide , um, lots of important and useful information to the field. And so , um, we wanna make sure that everyone knows about this, about all the webinars that we’re doing. So you can always go to the APH connect center.org website , um, and hover over future webinars. And you can get a list of what’s there. You can also get a list of past webinars. Oh, and a couple more webinars I needed to mention. I’m sorry. We have , um , on November 18th, we have an ONM for seniors with vision loss , uh , and , um , and how those services are being provided from a distance. Um , so that’s another one that’s really important. And I know we’ve had a lot of questions about how people are receiving those services , uh, via distance education at this time, especially like I said, with COVID. And then , um, in December we have a , uh , career connect webinar called blind kids just want to have fun. And so , um, we’re talking about summer camps at that webinar in December, and I know that that six months ahead of time, however, we need to start planning for summer, at least that far in advance for our kiddos and those summer camps are dealing with transition. And so for anyone who has a child who is 14 or up to 22 years old, and talking about , uh , getting ready for transition , um , this is a webinar for you. And so please make sure again, that you’re visiting our website APH connect center.org, and you can then again, get a list of upcoming webinars and you can also get access to past webinars that have happened since they are recorded. Um, and then we have them also recorded on our APH YouTube channels . So then you can get , um, get the information from there if you weren’t able to participate live during the actual webinar on the date and time that they have . So , um, as you can see, lots of going on , um , at the APH connect center, and we’d love to have you be a part of, of what all this exciting stuff that we’re doing. So thank you for your time. And I look forward to hopefully seeing some of you at our webinars,
Sara: 44:24
That’s it for today’s episode of Changemakers , be sure to look for ways you can be a change maker this week.
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Jack Fox: 0:01
Welcome to ChangeMakers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Sara Brown: 0:18
Welcome back to ChangeMakers. My name is Sara Brown, and today we’re going to talk about all the APH services that are geared towards students, parents, and educators. First, if you’re new to APH , we know 2020 has been an interesting year with COVID-19 changing every aspect of our lives. One major change was providing services during a pandemic with students, learning from home, parents and caregivers found themselves providing additional educational assistance. And teachers found themselves working to engage with students in a virtual world from those needs, the Hive Access Academy and ExCEL Academy emerged today. We’ll talk to Learning Management System Administrator, Amy Campbell, National Director of Outreach Services, Leanne Grillot, ECC coordinator at the Utah Schools for the Deaf and the Blind, Robin Clark. Then later we’ll hear from the ConnectCenter. First, we’ll talk to Amy and Leanne with the Hive. The Hive is brought to you by APH and offers a variety of free online courses for vision professionals and educators. Hello, Amy and Leanne, and welcome to change makers. So tell us today what the Hive is and the services it provides.
Amy Campbell: 1:31
Well, I, first of all, can’t , uh , discuss the APH Hive without like first referencing the symbolic nature of the bumblebee because we’re talking about a hive and the bumblebee. And so the way it relates to us is that just as bumblebees are really industrious , um, busy educators are too. And so we make that bumblebee linked to educators and being busy and the APH Hive for us serves as a professional development hub for educators to fly into, you know, and another way of, you know, to gather that symbolic honey, because we think of everything that’s inside The APH Hive as being honey is being sources, resources that educators need in order to better do their job and to feel better equipped.
Sara Brown: 2:28
Leanne.
Leanne Grillot: 2:31
Hi, this was a request from our ex-officio trustees across the United States to provide services in a way that educators could grab bites in between students or while traveling and really meet on their time. So it is asynchronous instruction. Instruction could happen in your PJ’s, it could happen, u h, 15 minutes between students, as short snippets to be able to then learn the entire piece of information.
Sara Brown: 3:06
What demographic is the service geared to and how does it benefit them?
Amy Campbell: 3:10
Well, I think that it’s first good to know that the development of this accessible learning management system for APH is actually a five-year plan. And so we just successfully completed year one. So right now, as it stands, the APH Hive has an initial pathway for educators. U m, and those educators, you know, we’re thinking include, u m, those who serve early childhood through school a ge students. So while that is how we are serving at this time, pathways in the time to come are actually going to expand, to include a hub that will support families, u m, professionals, holding leadership roles, and even those educators that are serving the adult population. U h, right now those educators that are serving young children and students, they benefit from coming into the Hive because we have content in the areas of assessment, early childhood core curriculum, and then the expanded core curriculum.
Sara Brown: 4:21
Do vision professionals and educators. Do they receive a certificate or credit for participating in the Hive?
Amy Campbell: 4:29
Absolutely. And that’s what , um , also, I mean, I can’t say enough how much I love all of this. So , um, it’s good that we have a very short period of time to talk to each other because I probably could go on and on and on and share because I think it’s so valuable, but yes, the APH Hive, you receive credit. So we offer ACVREP credit and for taking the courses and what, how this can help all teachers. So while not every educator needs to , um, collect ACVREP credit, what it happens is , is once they do have that certificate form, they can use that to show their certificate of attendance and their participation in the course, this is actually something that can also be used, you know, within a local education level in which serving as those continuing education credits. So it can serve more purposes than one is what I’m trying to describe. And whereas there are other places that offer this type of credit we offer it , uh , it is totally for free. So they, they come in and they participate in the course and upon completion, they get credit for it that can actually serve those two purposes of if they need that ACVREP, or if it’s just as a way of showing that continuing education credit,
Sara Brown: 6:08
What categories are available for our professional to study?
Amy Campbell: 6:13
So, the categories that we have, you know, go back to , uh , what is offered currently is that assessment early childhood core curriculum and expanded core curriculum. And we were actually really intentional when we set up the organization of the Hive for that in that order, because we know that all good instruction begins with assessment. You don’t know what to teach and how to teach until you assess. So we have that first as a category, then we have early childhood that helps to give resources and information and training , uh , working with those young children, birth through age five, until they get, you know , ready to go into kindergarten. Then with the core curriculum, we know that as educators, we are providing access to the core curriculum, to the eight , you know , English language arts to mathematics science, social studies, that the history, the physical education, the fine arts and even career tech. And so within that category of core curriculum, things are broken down into those subcategories .
Sara Brown: 7:32
What can be expected during a course? Do you care to walk us through it?
Amy Campbell: 7:36
Oh , I can, I can totally do this in my mind. And , um, what I, when we come into the APH Hive and all you need to know is it’s aphhive.org, easy. You can go right in, you come and ride into our landing page. And it has a welcome message right there, letting you know that we welcome you to come in and take advantage of what we are offering. Once you enter in to the APH Hive. And you want to look at what the course catalog looks like. So I used the word course catalog, and that applies to those. Um, what I had mentioned about the assessment, the , um, early childhood, the core curriculum and the expanded core curriculum, you enter into that catalog and you can browse, you can go through and browse and see what is available and what peaks interest. And when you have found something that you like. So for example, one of my most favorite courses that we have offered right now is on the braille Lego bricks and so amazing that we have this gift of, with the Lego foundation to do it. Yeah, but there are really specific, specific things that educators should know about using the Lego bricks. And so they can come to the APH Hive, they can enter into the course of the Lego braille bricks. And when you enter in you enroll, and it’s just submitting who you’re, who you are, where you live your email address, just some of those simple demographics you enter in. And then just like magic. You are a part of the course and you can start working it through each course is divided into modules. So you go through each of those modules, there might be a question after watching a video. So I should say that when you are taking the course, all of this is video based. It is prerecorded content for the most part at this time where we are going back and watching something that has already aired, u m, that we have done through APA. And we go through through, and you watch that segment. That’s based on a certain key topic, if you will. And after that, there might be a check for understanding question. And so it’s just affirming that you watched the content that you understood what was being communicated. The question might be multiple choice, or it might be true, false. And then you naturally advanced to the next video that you get to watch. So it happens in that kind of a sequential series once you are completed, we did with going through the modules of the videos and that there will be at the end, an assessment that you take, not as scary assessment in any way, nothing that you need to study for and be worried about. It’s just allowing you to have that confidence that you totally understood what was being communicated. Again, very easy in the sense of true and false multiple choice. And it’s just taking on those questions of those key components that we were trying to communicate through that course, when that has been successfully completed, you’re almost there, you’re almost there to completion. You’ve taken the knowledge content, and, u h, you shown what you have learned, but what’s really nice is that then there’s an application piece. And with the application piece, there is what we call a f ollow-up activity. This gives educators the opportunity to apply what they have learned perhaps to the students that they’re serving. In some cases that might be creating a lesson plan based on the content that was learned. And you, and the intent is that maybe that follow-up activity might, might be 30 minutes o f, of gathering information and applying it and collapsing it into a document. But you’re applying what you have learned to the students that you’re working with. So you submit that f ollow-up activity, it comes to our end a t APH f or review. We approve it. And that is the final step of the process. After that you receive your ACVREP credit, and again, this is all for free.
Sara Brown: 12:32
All right, Leanne and Amy , is there anything else you would like our listeners to know?
Amy Campbell: 12:38
I do because I thought about this, and again, I’ve got to remind free F R E E it’s free, you know, while there are so many choices in places to go for professional development, I think this might be one of the few that currently exists to offer, u m , information, you know, with professional development, for, you know, for free. The second thing of reason why this is so important to me too, is I think of the term building capacity. We currently have a changing of the guard in our country. You know, a lot of teachers are retiring and fresh, new minds are coming in to take their spots, not all teachers of the visually impaired enter the role prepared to take on the challenges and the barriers. You know, some are receiving training as they teach, u m , some move over into this role without training at all. And then because our field is always changing just for the example of how we work with students with cortical visual impairment and thinking about how that has vastly changed over the past 10 to 15 years, even our seasoned teachers, you know, still they’re carrying that torch steadily, and they need a place to come in refresh and learn new things. And so I think that, that the A PH Hive is that hub that allows teachers to have a greater opportunity to build capacity for what they’re doing so that they feel more skilled, more confident, and that again, they can do it on their time, their terms, whether they’re in the home, whether they’re in the office, they can do it. And again, if they only have 15 minutes at a time to invest to learn something new, the APH Hive offers that, but it’s all with new content and things that we need to know that is current, u h , t o do today’s ways of working with students.
Leanne Grillot: 14:48
I think I’ll add one more piece. Our goal is to grow. And so we know there is great tent out there being produced and provided. We are able to accept other people’s work, to absorb into the Hive, to work into AVCREP credit. So that’s another thing for those field professionals and agencies out there that if t heir, t heir hard work isn’t getting viewed by enough people, we’re here to help because it is not our, our goal to create everything. Our goal is to partner with others, to make sure that the word is getting spread. And as Amy said, build that capacity. So the Hive is a place where you can gather information and then show mastery of the content and the application of the content that was really the beginning, but that’s only just the beginning of the learning management system with gaining information through a course, the goal with the Hive is to also bridge that gap of community that sometimes happens for our teachers who are out there on their own. They really are a l one Wolf out in a community area. And the only T VI around, I say, T VI, you could be an orientation mobility specialist. You could be a vision, u m, rehabilitation specialist. There’s a variety of different, u m, field, but many of us feel very isolated. So that’s very purposeful. So one of the things that we would also be providing is a place to get a discussion board. So you could c ross share information. How are you doing it? I would like to share this lesson plan that I have out there. Well, creating a discussion board at, at the APH Hive allows a person to know where to go back and find that information of, Oh yes, you could use multi-colored paper, u h , with braille t o try to prevent them from using their eyes to read it and really focus on their fingers for reading it something as simple as that. So having the discussion board is one of our iterations to come in these next five years. Another piece to think about as our field is, is shrinking. And we would like to grow it, but it’s a little known field career path. So we would like to build, u h , educational snippets for people, such as a guidance counselor, both at the high school level and even the college level to be able to share how wonderful this field is and what great things you can become and , a nd always have a job. That’s not a problem in our field. You will get hired somewhere without a problem. So those are other pieces that we’re hoping to grow throughout these years, and then, u h , give people a place to go out and find others. So it could be, they come to the Hive and say, where can I learn more about, and we recreate something. We send them to a place like the Texas school for the blind or Perkins, because the re they have great courses and opportunities available as well.
Sara Brown: 18:02
Thank you both so much. There you go. A highly valuable resource for vision professionals and educators to improve their response to the needs of students with visual impairments. Continuing education is such an important aspect for professionals. It’s how they improve their skills, learn what’s new, deepen their knowledge and develop innovative approaches to teaching students. Again, the Hive is not just for professionals. It’s also for parents as well from the Hive to the Academy Access Academy. That is, you might know it formerly as at home with APH now, renamed Access Academy. This service is your one-stop resource for education and training webinars for APH products and services. Amy and Leanne are here to tell us more. So Leanne , tell us about Access Academy. This is a new service. So a lot of people might not know about it.
Leanne Grillot: 18:53
So in the spring, we , uh, in response to the pandemic, wanted to get out there and help folks that we normally would have helped through attending conferences. We started the at home with APH webinars. So we know you’re at home and you want to learn more. We’re going to come join you in your living room. Those were very successful with a high attendance. People were really enjoying us being in their living room and , uh , gaining information that way. Uh , the also bonuses, we record those and we post them on our YouTube page so that they’re still available there. You can watch them that way if you so choose because of the success. And we know that people are returning back to work, they’re not necessarily at home or we sure hope they’re not where we are hoping that people are returning back to work. We wanted to make a title that more matched what is going on. So the Access Academy is really adult courses for continuing education and also for that student success. So we’re really giving adults a place to learn it’s live instruction. So you have the opportunity to meet teachers who are using products or relying upon a service from APH. You might be talking to the person who has developed the product. You could be working with an individual who has blind themselves on uses the product. You are surrounded by other fellow educators. You have the ability to ask questions, live, both typing that in a chat, depending on the number of attendees, even verbally asking your question, and this gives you the opportunity to feel like you’re in a, in a class with that information. We do encourage people. If we’re talking about a specific product, they have the opportunity to get that product in their hand. Then they can ask immediate questions about the problems that they might be having with that product, how to hook it up, how to turn it on, how to find that button we’re talking about. So that is really the intent of the Access Academy. Now, the bonuses is you could be a educator who needs it, but we don’t bar the door and say, Nope, only educators allowed. We have had parents come in, we have had consumers, people who actually use the product, join us. W e have had paraprofessionals people who are working with our students when that teacher is away, w e have had even our college soon to be teachers joining us a nd learning about products. So it’s quite the community that has come together. How is this different from the Hive? The big difference is synchronous and asynchronous. The Hive is asynchronous. You really can take part of it at midnight and at 4:00 AM. I am not producing a live webinar at midnight or 4:00 AM. So it is truly up to you for the asynchronous in the Hive. T he feedback is a little different in the Hive. I f you are submitting something and something comes back where that has a short delay to it, the Access Academy is immediate feedback. And so you are able to interact with your instructor directly.
Amy Campbell: 22:13
And I think with that also of sharing how they are the same, that there really are more similarities in the sense that we are taking content from the Access Academy or what happened previously , uh, from the at-home with APH. We also in the Hive are you is, you know, we’re using content from the ExCEL Academy. And so we’re taking this live video footage that was live at one time and embedding it within a course. So right now, after one of our webinars airs, so you, you get the ACVREP credit when it’s airing an d participating live it then gets pushed out and anybody can go in and tap into our recordings. You tap into recording, and that way you don’t get credit for it, you get the luxury of being able to absorb everything that you’re learning with it. Once it goes into the Hive, though, things might be changed up a little bit. And this is a good example that I can, that I can paint for you. So in the Lego course that we have originally, we had five webinars that included over seven hours of content that aired through the webinars series at home with APH, for purposes of the Hive, we took that seven hours of content spliced, diced rearranged created a new storyboard with it. And the outcome is four hours of content. So things are condensed and consolidated and created into a course so that when you go into the Hive, then you have that access to that credit. Once again,
Sara Brown: 24:14
Who is the target audience for Access Academy?
Leanne Grillot: 24:18
Our main goal is adults. That being said, we are not going to, again, bar the door from even a student who is a K-12 student using a product or wants to learn. We would not stop them from entering, but the core audience is adults. We are hoping to catch those adults that need the knowledge of the product. Again, keeping in mind that it might be someone who became a teacher of the visually impaired through an untraditional path, meaning they might’ve been a science teacher first, and they’re still absorbing information. But again, creeping all the way down to those teachers who are to be there in college programs, as well as our paraprofessionals and even a parent with those students that are , um , being educated at home at the moment, they might also find it beneficial for them to learn how to use the product directly and be able to ask those questions right away.
Sara Brown: 25:14
How often are you all doing webinars?
Leanne Grillot: 25:17
It varies. Our traditional days tend to be Monday, Wednesday, and Fridays. They might happen once a week, twice a week or three times a week. And there have been times when we have had seven different opportunities to learn. We try not to pack that many in, we know that our educators are busy people and they have told us they really would like to be able to attend it all, but they must work with students and clients. So we have been trying to space those out for them, but they are , uh , frequent enough and they are not going away.
Sara Brown: 25:55
And where can listeners find more information about Access Academy?
Leanne Grillot: 26:00
On our webpage currently you can go to resources and under resources there is a tab that says training. That training page takes you to a variety of different sources for professional development and learning. One of which is the APH Hive. Another is the Access Academy and the third is the ExCEL Academy. Now the ExCEL Academy starts with an E and that’s for our kids.
Sara Brown: 26:29
Is there anything else you want to say about Access Academy that we might not have talked about or that you want our listeners to know ,
Leanne Grillot: 26:37
Uh , on that training page, as well as a place where you can actually submit what you are hoping for a , that allows us to work and tailor , to develop things that you would be looking for for receiving professional development in that, in that way, we hope again, to be able to get out there and see you at your place and your , uh, conferences and, and those areas. But because so many educators don’t get the time to break away for those longer events, we want to make sure that you are also getting the knowledge in a way that meets your needs. And so these one hour, one and half hour, sometimes we go as long as three or four hours, give you that opportunity.
Sara Brown: 27:23
Thank you both so much. We really appreciate you taking time to talk to us for the professionals listening. You can receive Academy for certification, for vision rehabilitation and education professionals, or an ACVREP credit. During the webinar, you must listen for the opening and closing codes during the live sessions and submit them on the AVCREP certificate request form. Once all that’s done, you’ll receive your certificate, emailed to you. Within a week. A few months ago, we conducted an access and engagement study. This was to find out if your needs were being met during the pandemic. Leanne’s here to tell us about a second access and engagement study currently underway.
Leanne Grillot: 28:05
I would like to let people know that the second access and engagement survey is now available, and we are assisting with multiple other entities to get the word out. So we are collecting the data and the website is www dot access, engagement.com. And if you would share this teacher far and wide with other teachers and families you work with, we would really appreciate it again, the access and engagement survey that the first one that went out is also available at that same website, if you want to see the report. So all of the hard work that was done during the spring and summer to address the needs of students because of the pandemic, that report is available for you to use. So you can show supervisors and parents that their work mattered putting that information in, but we definitely need to see what’s happened since, because this is a very unusual time for us. So if you can take the time to even assist family members i n completing those surveys, we would really appreciate it. Again. The website is www.accessengagement.com. One further note, if you would like to know a little bit more about the first survey and the report that has come of it, the American foundation for the blind on November 10th at 2:00 PM, Eastern is featuring a town hall and you can register for that as well. It free and family members are also welcome to he ar t he hard work of completing surveys was fruitful.
Sara Brown: 29:49
Now we’ll turn to the ExCEL Academy, a resource focusing on virtual instruction. For those not physically retu to brick and mortar buildings. We’ll talk to Robbin Clark and Leanne about ExCEL Academy and the variety of ways it’s helping children learn. Hello, thanks so much for joining us. So tell us about the ExCEL Academy.
Robbin Clark: 30:10
Well, the first thing I want to say is I’m sure somebody has to be wondering what is an ExCEL Academy? How did they come up with that word? What is ExCEL? Is it so that students excel at something? Well, sure, but ExCEL actually stands. It’s kind of a short way of saying , um , expanded core education learning. So just so everybody knows even what this is, it really is about , um, expanded core learning.
Sara Brown: 30:41
ExCEL has webinars for kids of all ranges. What are they in? What can one expect from the classes?
Robbin Clark: 30:49
So now that you know what ExCEL stands for let me tell you a little bit about what you can expect. You can expect and intentional expanded core instruction lesson in an hour. What you will not find is a boring or stale lesson about this is what the expanded court is because the expanded core , really, when you understand it, it’s, it’s something that’s thriving and alive and that’s what it does for our students. So when you come into any of the ExCEL sessions, you might look at it and at face value, say, why are they just doing farm animals sounds or talking about , um, cooking? Well , there’s so much more to these sessions. In fact, all of them really have been reviewed to make sure that we are covering expanded core components and skills from our assessments. But what I really like about these sessions is that I think it’s showing everybody, students, teachers, and parents, what the expanded core really is. It’s not just like a science lesson where you sit there. It’s, it’s got a lot of avenues. It’s got a lot of opportunities with it. And sometimes it’s not even overly serious. Sometimes it’s just something that gets background knowledge going. So when you come to these sessions, expect to find intentional instruction, targeting, expanded core skills that supplement whatever else a teacher or an O&M instructor might be doing.
Sara Brown: 32:34
These are all live webinars. And if so, is there a for students to communicate to the instructor during the session, or do they have to wait until the end of the class?
Robbin Clark: 32:45
No, these are live. And in fact, I’m going to use the word interactive. And I mean that not just for the students who are attending this live , but I also say this for students who are attending these in the recorded versions, these are interactive sessions. So we do utilize the chat window. Students will raise a digital hands and we will unmute, but there is definitely inter interaction happening throughout the lesson. So students can jump right in. And in fact, throughout many of the sessions we want to hear from students, they give comments, we just talked about problem solving, and we were asking the students, what are situations or is it hard to problem solve? And so we have students right there giving their feedback. And in fact, the way that they’re really set up, even if you’re watching this in the recorded session, there’s still great opportunity for students to reflect , um, kind of self-talk and still get that interaction or to see what their peers might be saying. So very interactive, great opportunities.
Sara Brown: 33:51
And how do you sign up or register to, to, to go into ExCEL Academy?
Leanne Grillot: 33:58
This is Leanne , and I’ll jump in here. You can go to the APH website under training. So it’s a resource. And then under training, you would then go to the ExCEL Academy. There is a single link. And once you sign up, you will get a link. It’s the same link for every single session on Tuesdays, Wednesdays, and Thursdays. At that point, you’ll get emails that remind you of the information and you can always visit that page to see the upcoming topics and descriptions. We tend to focus on Tuesdays with our students who are kind of between kindergarten and sixth grade. In other words, it could be that we tell you, it gives us about a kindergarten level , uh , course, that we’re offering. And then on Wednesdays, we stick kind of that higher level junior high school age student, we’re thinking six to 12th grade. And then on Thursday, we’ve really made sure to gear that session to students with more multiple disabilities, including visual impairments, recognizing they might have an assistant or a parent or even a older sibling, that’s helping them participate. We also know that those are a group that might not verbally interact or even type much in the chat. So we’re making sure that we’re gearing it toward that level of student.
Sara Brown: 35:17
Is there anything else you want to share about the ExCEL Academy? Anything maybe we didn’t cover?
Robbin Clark: 35:23
I would like to remind everybody that it’s easy to just use these classes in one way, students show up, but I’d like to challenge teachers and mobility to think about this. U m, one, having your students attend a live, that’s always a great option to a supplemental part to maybe a lesson, your teaching there. So there’s a variety of different ways that I really want to challenge people to use these excellent resources and then something else I want everyone to think about, especially for our teachers and many of our paraprofessionals. I want you to think of going to the YouTube channel and seeing all of our recorded sessions as an ECC idea factory, have you wanted to teach a concept, but you were like, I wasn’t sure how to cover it. We have excellent instructors with various backgrounds and you can find everything from 3d shapes to going to a restaurant. Those are literally two sessions I, myself just watched and I’m using in my supplemental work.
Sara Brown: 36:36
Now we’ll hear from the director of APH’s ConnectCenter, Olaya Landa-Vialard. The ConnectCenter incorporates FamilyConnect.org, CareerConnect, VisionAware.org and BrailleBug.org, all resources that cover every aspect of life. Olaya what’s the latest?
Olaya Landa-Vialard: 36:54
Okay, well, ConnectCenter has been very busy in addition to , um , the websites , the visionaware.org familyconnect.org , uh , careerconnect.org We also have , um, the information and referral line and the phone number for the information and referral line is +1 800-232-5463, or individuals can also email us the at the , um, information and referral line at ConnectCenter, one word, @aph.org, and also to make it easy to access the different sites and connect with us. Individuals can go to aphconnectcenter.org , um, that will bring them to a landing page that then has links where people can just click on VisionAware or CareerConnect or FamilyConnect and get directly to those sites. Um , so they don’t have to be looking for it or typing it out and visually they can, they can do that just as easily. Um, and so also on that landing page on the aphconnectcenter.org landing page, you’ll also see , um , the ConnectCenter calendar, the ConnectCalendar, which is , um , a calendar where events from all over the field can be highlighted and promoted so that the BI community knows and can benefit from your events that are happening out there all over the country , uh , and all over the world. And some cases , um, on that landing page, there is a , um, it , it’s pretty easy to submit your event. Um, you can just click on there, there’s a button that says submit event and , um , you fill out a document and then , um, the staff on the other end, we’ll take a look at if there’s any or anything we’ll contact you, otherwise it will be placed on the , um, uh, ConnectCenter calendar and for all to see. So that that’s always a good thing, so that if you’re planning an event or anything in your state , uh , or in even within the same region where you are, you , you can always see, make sure that somebody else hasn’t already planned something for that day, so that you’re not doubling up on events, especially making people have to choose between one event or another. Um , so that’s where I think having a community-wide VI community-wide calendar has been really beneficial and really helpful for all of us. Um , so there , um, you’ll all, I just want to highlight a few more things about the ConnectCenter , um, for VisionAware , um, VisionAware is the website where we , uh, address eye diseases, eye disorders , um, a lot of individuals who are losing their vision tend to go to that website. It’s also for people who might be transitioning as well , um, from school to college. Um, and so there’s a lot of good information there for older individuals who are blind as well about technology. Um, that’s a big thing when you’re losing your vision, trying to figure out what technologies are available , um, to help you navigate through that right now we are actually being featured in the National Eye Institutes November newsletter as their November partner resource. So we’re really, really excited about that. That’s really going to get our , uh, our name on it there and have more people get the information they need , um, that we provide. We’re also partnering with Wilmer Eye Institute at Johns Hopkins to put together some continuing education webinars. So that’s still in progress. Uh, and we’re also being featured in a public service announcement, along with Mississippi, state’s older individuals who are blind their technical assistance center , um , as well as presenting about the ConnectCenter to their stakeholders. Uh , we also just planned a diabetes education webinar for a VisionAware , um, to help people with low vision or blind yeah . Monitored or their glucose and take insulin independently, which is very important. Um , there’s not a lot of information out there for that, for our particular population, in terms of helping diabetics learn how to read their insulin levels , um , take their blood sugar levels , um, when they have low vision. So we’re really, really happy to have that going on for us FamilyConnect. Now we’re onto the other website. FamilyConnect is hosting a webinar on November 12th featuring Vera Jones. Um, she is most importantly, the parent of a son who is blind, but she’s also a motivational speaker professional development coach, author, award-winning television and radio broadcaster and Syracuse University Hall of Fame Scholar athlete. So she’s going to tell her story of quote playing through the foul unquote and talk about her son and his perseverance and success. So we’re really excited to have Vera , um, be available to provide , um, her motivational talk to our families , uh, on FamilyConnect. Um, we’re also , um, partnering with the Illinois School for the Visually Impaired early intervention outreach to put on early intervention for students who are visually impaired webinars series starting this month on November 16th. Um , so check out the FamilyConnect website for registration information for that, and where for now we’re going to move on to CareerConnect. That’s a way you see how we’re so busy. Um , CareerConnect is hosting the national trends, condition, conversation quarterly. So individuals can go to CareerConnect.org for more information about how to participate in that very important conversation. Um, in addition, we will be hosting a guide dog webinar on December 9th. And finally, for those who are seeking employment, we have the Job Seekers Toolkit that’s available for anyone who is low vision or blind. And they are either transitioning from high school to college to look for jobs, or they are older individuals who are losing their vision and are trying to either keep their employment or , um, you know, figure out how to , um, help guide their current employers to accessibility issues that may come up because they’re losing their vision or help them find a whole new job altogether. And so that’s also available on our CareerConnect website. So , um, for now I think that’s it. So just stay tuned for the , uh, to the APH ConnectCenter for more exciting things that are happening all the time.
Sara Brown: 43:19
The Hive Access Academy, ExCEL Academy and the ConnectCenter, all wonderful resources created with you in mind, we have included links to all the websites. So please look in the show notes for details. I hope you have enjoyed our time together and that’s it for today’s episode of ChangeMakers. Please be sure to look for ways that you can be a change maker this week.
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Jack Fox: 0:01
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Paul Ferrara: 0:20
WELCOME BACK TO CHANGE MAKERS, A PODCAST FROM AMERICAN PRINTING HOUSE. I’m Paul Ferrara, part of the Communications team at APH. During our 152nd Annual Meeting held earlier this month, APH President Dr. Craig Meador offered a powerful charge, reminding everyone in the field of blindness of the importance of their work as it relates to civil rights and social justice. We’ll listen in on those remarks later, but first we’ll recap Annual Meeting and replay some key moments. Be sure to check our show notes for links to full recordings from Annual Meeting. Due to COVID19, this was our first ever virtual Annual Meeting and while COVID has been a trying time for all of us, going virtual allowed us to host our largest Annual meeting ever, with nearly 1300 attendees, including advocates, educators, innovators, leaders and parents from the community of visual impairment. The theme for this year’s meeting was Better Together. Today we’re going to hear how, regardless of a pandemic, members of our field and community know that whether it’s leading or listening, celebrating or supporting, life’s successes and setbacks are not meant to be carried alone—our joys are greater and our burdens lighter when we face them together. Let’s begin with Dr. Meador summarizing the state of APH and describing our next steps with his three p’s: pandemic proof the practice, product/service balance, and partners.
Dr. Craig Meador: 2:04
We need to pandemic proof the practice. Okay, how’s that for alliteration? So what I mean by that is we need to make sure our products, when our products launch, there is strong support. There are videos, there’s curriculum. There are trainings that are all wrapped around that product. Another thing we need to do is we need to make sure that a lot of our products need to be what I call a plug and play. You need to be able to pull it out of the box and with less than 30 minutes of, or not 30 minutes to get that down 30 seconds, most people would be able to figure out what to do with that device. And I’m talking not just the trained professionals, all of you there in the room, but I’m talking about , uh, parents, I’m talking about , uh, the products we’re producing. People should be able to open that box and say, Oh, I get it. This makes sense. So pandemic proof, the practice, developing those products that , uh, anyone can use, you don’t need a 300 page manual to get us through there. And then also products that can, we can find replacement parts for real quickly. Uh, we’re relying too much. We are in the middle of doing this. Um, what do we call it? It’s a risk inventory. And basically it looks at every product that APH does. And it says, how many of those products require a manufacturer that you have no control over? And that’s about 80% of products at APH. And so that’s kind of scary as an agency. You need to figure out how to fix that situation. So we’re going to pandemic proof, the practice, next one, product service balance. We’re doing some of this and a lot of this with the hive and , uh, all the online trainings we’re doing. Our goal we set this two years ago was we are pretty much APH has always been products first service, second or, you know, 70, 30, we’re trying to move to a 50 50. That doesn’t mean we’re going to , um, do less of one. Basically. We’re going to be doing more of service, bringing those up. And , and a lot of that, if we do, if we pandemic proof, a lot of that will naturally follow, but we also are going to be relying on our third P. Um, and that is our partners. We need you all more than ever. This is a , this is a, I won’t say it’s a big field. It’s a small field with big responsibilities. Uh, the reach is enormous and gets bigger all the time and all of it , I’m telling you stuff you already know. So bear with me, but we need partners. We need content. We need trainers. We need the, to be able to grow , um, and strengthen everybody because I believe that’s one of our responsibilities at APH too . We’ve been fortunate. We’ve we have a stable federal funding. We have , uh , a stable base from which to draw, and we have a historical base from which to draw. Therefore, we have a responsibility to the field to be a helping hand, to help all of you when you need it and to provide the level of support that you need to be successful in your job
Paul Ferrara: 5:06
Now, on to a panel discussion with leaders from the field of blindness. During that discussion, Mark Riccobono, President of the National Federation of the Blind provided some important observations about how workplace culture might change positively because of COVID19.
Mark Riccobono: 5:23
It has allowed us to think about the culture as we want it to be in the future. Uh, the culture as it’s today is relevant, but , uh, how do we want it to evolve? And, you know, the Federation we went through , um, we took a hard look at our brand now seven years ago. And so this timing is kind of good because it fits into our evolution of what do we want our culture to be as , uh , as a membership organization. And how did the staff fit into that? Because at the, of the day, we’re driven by thousands of members, the staff just support that they work for the members. So if we have staff working in , uh, Nebraska and Illinois and , uh, Minnesota, wherever, we can still plug them into the core of what we do through our local affiliates. So we’re just being more intentional about how we do that. And I would say we’re still evolving it in a way that makes sense for us. And , um, the staff are , are a key part of that. Um , the last thing I’d say is you have to continue to have fun with it, right? So , um, you have to allow people the space to have fun, even as we figure out what this new culture is going to be. So at our in-person staff meetings every month, we always , um , acknowledge birthdays and anniversaries and we sing, I don’t know if any of you have ever tried to have a group sing on zoom but just try it sometime. You’ll you’ll know the experience. Uh, so now we’re having a lot of fun with trying to figure out, well, what do we do instead? You know?
Paul Ferrara: 7:05
We thank Mark for sharing his insights, and of course, it’s no surprise that members of our community are undaunted by new challenges in the workplace. As we mentioned in the previous episode, we had the pleasure of inducting two new members into the Hall of Fame: Leaders and Legends of the Blindness Field. They are Kathleen M. Heubner and Ann MacCuspie. Here is James Deremeik, the Education/Rehabilitation Program Manager at Johns Hopkins, a faculty member of the Johns Hopkins University School of Medicine, and also the chair of the Board of Governors of the Hall of Fame, telling us about the Hall.
James Deremeik: 7:48
Good afternoon. And thank you and welcome to the 2020 Hall of Fame induction ceremony for leaders and legends to the blindness field. I’d like to begin by one congratulating, Kathy and Ann on an honor well-deserved. But before we get any further special, thanks, go to Craig Meador and American Printing House staff for allowing us one to again, tap onto the annual meeting, to host this event. And more importantly, their technology wisdom, and hopefully good luck will get us through this for the next 45 minutes or so, cause this would not have happened without the creativity and technology that APH has put forward. So Craig, thank you to you and your staff. To help begin, let me read to everyone in the mission statement, which basically personifies the work of the hall. The Hall of Fame for Leaders and Legends of the Blindness Field is dedicated to preserving, honoring and promoting traditions of excellence manifested by the specific individuals inducted into the Hall of Fame and to the history of our outstanding services provided by people who are blind and visually impaired. We are approaching the 20th year in terms of the Hall of Fame being on a radar screen to our field. It was in July of 20 , uh , 20 of 2000 in Denver, Colorado, that there was a presentation made. That was a carry over from the Wisconsin AER . At that time, it was entitled Here Are Some Pioneers of the Blindness Field, the four individuals that help give us a solid footing and put this in front of the field where Mike Del Povich, Rod Tosic , John Maxson and Dean Tuttle. These individuals went and identified 32 folks that had made a major impact upon the field and education rehab and overall research and delivery service in that they created vignettes of the 32 leaders and presented that in a general session to the membership at the Denver AER meeting. From the Denver meeting, two seeds were planted that October 2001, the American printing house under Tuck Tinsley announced that they would provide a permanent home for the Hall of Fame in the old wing of the 1926 part of the building. This was a tremendous asset and giving the field, the home for the Hall of Fame to up to this point was a concept that just talk, but not an actual museum. I’d like to end with some words that one of the individuals that’s done quite a bit in creating some of the biographies for our current inductees has put forth. In It he describes the Hall of Fame as the paths that our heroes have blazed and the legacies that they have provided with the purpose and meaning. So Dean Tuttle , thank you for putting such profound words and describing the folks that are a very select club that both Ann and Kathy will join tonight.
Paul Ferrara: 10:53
If you haven’t already be sure to listen to our previous podcast to learn more about this year’s inductees, Kathleen M Huebner and Ann MacCuspie here’s APH museum director, Mike Hudson, introducing Kathleen Huebner.
Mike Hudson: 11:10
Our first inductee to the class of 2020 is Dr. Kathleen Mary Huebner known by her friends and colleagues as just Kathy. If we do enough in our long lives to merit it instead of a two page resume, we get a longer document summarizing our accomplishments called a vita, which I know from my long forgotten Latin classes is translates as life or maybe career if you like it. But I wonder if it’s possible to summarize all that this amazing woman has done in her time on this earth in such a four letter word, her career has been as varied as it has been long. She has provided direct service to children and adults who are blind or visually impaired. She has served the field of blindness inside influential institutions. So essential to our progress, over the last 60 years, she has taught and led programs preparing the next generation of teachers of the blind and visually impaired. She’s widely written about and published the results of her work and research and expanded the body of knowledge we all draw on to grow and improve our service, and she never stopped learning herself, studying and pursuing advanced degrees all while holding down demanding professional positions. And at the height of her academic and professional powers, she drew all those hard won lessons together to help lead two groundbreaking national initiatives that helped ensure the continued growth and vitality of the field.
Paul Ferrara: 13:04
And now let’s hear from Kathleen herself.
Kathleen Huebner: 13:05
Helen Keller said “alone, we can do so little together, we can do so much.” With that in mind, I would like to thank all of my past students, their families, my family, their, my friends, teachers, advisors , mentors, and colleagues with whom I have learned and greatly profited their guidance has led me throughout my life and my career. Since this is most likely the very last time I will have the opportunity to share some thoughts with all of you. I would like to put my teacher’s hat on, of course, and share five guiding principles, which I have tried to practice. Although I often fell short, I encourage you to try to implement these five principles. As you provide services to individuals who are blind or visually impaired. First always, always have the highest expectations possible for your students, your clients, your colleagues, and most of all for yourself. Second, be a strong and knowledgeable advocate for yourself, your colleagues and your students. Remember to follow the advice of Dr. Martin Luther King. “Our lives begin to end the day we become silent about things that matter.” Third, be supportive of your students, colleagues, and again , yourself never hesitate to express positive feedback to all those with whom you work. Keep another Helen Keller quote, mind optimism is the faith that leads to achievement. Nothing can be done without hope and competence. Fourth, always look for alternative strategies to accomplish your students as well as your own goals. Don’t be afraid to be audacious and bodacious. Fifth, believe in the power of collaboration as it is essential to accomplishing the goals you have for your students and your clients. I am truly honored and humbled to be inducted into the Hall of Fame for Leaders and Legends in the Field of Blindness. I am privileged to have personally known and benefited directly from interactions with and the readings by 37 of those inducted before. I have literally learned at the feet of many of them.
Paul Ferrara: 16:40
Next, Mike introduced Ann MacCuspie.
Mike Hudson: 16:44
Ann spent most of her career working for the same agency serving and leading it through the dramatic changes that affected the residential schools for the blind in the 20th century. She began her career as itinerant teacher of the visually impaired in her hometown of Halifax, Nova Scotia in 1972, the next year she joined the staff of the Halifax school for the blind teaching fourth grade. The residential schools were deep in transition. Only a few years earlier the number of children with visual impairment , uh, disabilities attending residential schools had slipped below 50% for the first time. That year enrollment in Halifax was 165. In 1975, the school changed from a private to a public institution and was renamed the Atlantic Provinces Resource Center for the Visually Handicapped. The Atlantic Provinces Special Education Authority, that I’m going to use APSEA, the acronym, we love our acronyms was formed to oversee both the school for the blind and the school for the deaf. Um, and in 1 994, the residential programs at APSEA ended and all schools were mainstreamed. All students were mainstreamed. And Ann’s role, u h, was changing t oo. In 1979. She began coordinating provincial programs f or APSEA and in 1995, she became the director for APSEA programs for students with visual impairments, a position she held until 2005. Ann was there to influence how children would be supported through the new service delivery model. The APSEA model of service delivery was such that students went to the school for limited periods of time to receive intensive assessment and instruction in disability specific skills. And then they returned with those newly acquired skills to their local school districts to continue learning alongside their peers. To this day, the APSEA model is held in high esteem by educators in Canada, as the inclusion of students with disabilities continues to be the focus of our educational system. Ann’s employment did not necessitate research a nd publication, but she felt a strong commitment to professional communication, especially sharing data for important decision making Ann’ s writing and her research had a profound impact on the quality of training and professional learning among teachers of students with visual impairments in Canada, her groundbreaking book promoting acceptance of children with disabilities from tolerance to inclusion is widely cited. Her compassion for the social needs of her students and her devotion to making sure that those needs were met, have encouraged schools to think beyond mere academic preparation to include a more comprehensive preparation for success i n life. And Ann could always be counted on to join in big efforts, her leadership and work on the Canadian Braille Authority led to large grant awards for special projects projects. She was on the UEB implementation committee and played a key role in decisions regarding when and how the new code was to be adopted in Canada. And she became the Canadian voice in organizations, such as the AER and the International Council for People with Visual Impairments.
Paul Ferrara: 20:15
Let’s listen to a few moments of Ann’s remarks
Ann MacCuspie: 20:20
During my career, I was both blessed and challenged by the tremendous changes in the field. Things like early intervention for children, a formal program of orientation and mobility for children, adaptive technology change in the braille system, all those things which we had to incorporate in Canada. And we never , we have never had a federal agency in Canada that oversees this. So each province must work to , to develop their own services. And we in Atlantic Canada had the four provinces where we’ve worked very well together and shared with the other provinces of Canada. In Atlantic Canada our programs and services had to address the needs of approximately 800 children. These , uh, the services had to be provided in two official languages, English and French, and the delivery of , uh , services was over an area of 93,000 square miles. So you can imagine that we had lots of challenges as we moved from the residential school to off-campus services. And then I think one of our , uh , one of the most wonderful things that has happened in Atlantic Canada and a great accomplishment has been a formal connection between public schools, inclusive public schools and the special center where services are provided for those students in the public school systems. Needless to say, I’m very proud of the work we’ve done in Atlantic Canada and of the dedicated colleagues with whom I’ve worked. In the process of preparing my acceptance of this honor, I’ve had an opportunity to reflect on my career and the incredible benefits I have received by virtue of working in this field. I was fortunate to have the opportunity to participate in special projects and committees throughout North America. And I’m pleased to say that even after retirement, many of the friends and colleagues that I met are still in touch and we do connect now and then, so that’s a wonderful outcome of this profession. Throughout it all, what more could I ask of my career? But to know that I was an important part of a team that made a positive difference in others.
Paul Ferrara: 22:48
What an honor to add these legends into the Hall of Fame. Thank you, Kathleen and Ann, for your work and devotion to the field and to people who are blind and visually impaired. During another session, we discussed the effects COVID has had on services to students who are blind and visually impaired and reviewed the findings of a wide-ranging survey. Ohio State University Associate Professor, Dr. Tiffany Wild, read some of the feedback we received.
Dr. Tiffany Wild: 23:18
I think there is greater stress on the family system as well, simply because having a child with special needs is stressful. Even more. So if you’re worried about developmental and educational regression and their medical vulnerability fragility, if they were to become infected with the virus.
Paul Ferrara: 23:39
We also heard some important words about how services to adults who are blind and visually impaired have been impacted throughout the pandemic. Supervisor of Training Services for the Nebraska Center of the Blind, Greg DeWall, shared this:
Greg DeWall: 23:54
Orientation and mobility of course is probably the hardest to adjust to. And I’ll get back to that in a moment. But for our , our braille class, for example, that one was fairly simple. Um, you know, our, our braille teacher was able to connect with the students and via phone or via zoom , like many others are doing have the student read to her answer questions. The students would do their writing assignments. I would go to the apartments once a week, pick up the writing assignments and then bring them back to the braille instructor. So that one goes fairly easy. Uh, technology, of course, that was easy because you to do a lot of things remotely, you could sign into the computer , uh, work on things remotely. There was a big increase in technology skills, as Liz mentioned, because so quickly we had to get caught up with zoom and start doing things over zoom or over face time. Um , of course we used the conference lines a little bit as well, but most of what we did was over zoom, or over FaceTime or Skype, those types of , um , programs. Uh, home management, that, that one was a little, that one took a little bit of a working out. Um, one thing we did right away is we bought phone cradles or cell phone stands for all the apartments in our residential center and the home management instructor and I went into all the apartments and we experimented with different areas in the apartment that we could put the phone cradle to get the best view of what the student is doing. So that way we could continue with doing cooking lessons, cleaning lessons , um, you know, all those daily living skills activities. And as I said, we , we did it from finding the best view in the apartment where we could get a view of everything that the student would be doing and so that way home management and daily living skills were able to continue.
Paul Ferrara: 26:09
During our first general session, APH Museum’s Mike Hudson spoke about our 2-year journey to receiving AFB’s Helen Keller archives and what those archives and Helen Keller mean to APH and the world.
Mike Hudson: 26:25
And make no mistake. The Helen Keller brand is incredibly valuable. Here’s a rough way to understand how the Helen Keller brand compares to that of the American Printing House for the Blind. On Facebook, the APH site has 6,291 followers. The official Helen Keller Facebook page that AFB created has 107,000. That’s a factor of 17. If you type an internet search in quotes for APH, you get 173,000 results. Type in Helen Keller and you get 9,820,000. That’s a factor of 56. Now, often when visitors, especially school kids and their teachers arrive in the museum. They want to see our Helen Keller exhibit because they’ve been studying her at school. Before we had t wo artifacts. And when we were creating our collecting plan a few years ago, when we did our S WOT analysis, we acknowledged that AFB and in a smaller way, the Perkins School in Boston owned the Helen Keller brand in such an absolute manner that it would be futile to even try to build our collection i f belonged to them. And that’s all there was. And now it sits behind me here in our newly installed storage room, all of i t. So what are we talking about? What is the collection? I t’s j ust the world’s largest repository of letters, speeches, press clippings, scrapbooks photographs, architectural drawings, artifacts, and audio, visual materials related to Helen Keller numbering to about 41,581 items and held in roughly 310 record boxes. It includes her letters to, and from such notables as Alexander Graham bell, Pearl Buck, Mark Twain will Rogers, Eleanor Roosevelt, Franklin Roosevelt, Teddy Roosevelt, Margaret Sanger, Woodrow Wilson, and many, many others. It includes scripts and screenplays of films, television programs, plays, and radio programs starring or about Helen Keller. I t includes files about things named for her, including a Helen Keller Club, Helen Keller School, Helen Keller coin, Helen Keller day, Helen Keller Memorial fund, Helen Keller Memorial hospital, Helen Keller Memorial week, Helen Keller Rose, Helen Keller quilt, you get the idea. It includes drafts, manuscripts and correspondence resulting from her 11 books and countless articles and 475 speeches that Keller made between 1902 and 1961 on topics such as faith, rehabilitation, blindness prevention, birth control philosophy, and yes, atomic energy. It includes 10 boxes of press clippings. It includes architectural plans of her homes over 2000 separate photographs, 23 photo albums, 25 audio recordings and three films. It includes 250 artifacts, including sculptures of her hands paintings, gifts from dignitaries all over the world and boards. And something that I just found the other day, which I just found amazing. And, u h, u h, in the collection, u h, is a number of books, hundreds of them actually from Helen’s personal library. And there a re some survivors in there that are quite interesting. This is a copy of a book of poetry called Darkwater. I’m not sure if you can see that or not in the light here, Darkwater, by the, u h, u m, civil rights activist, W. E. B. Du Bois. And when you o pen the book up inscribed carefully on the inside, it says in both print and braille, very sincerely yours, W. E. B. Du Bois. 16, April, 1925. I have known you unknown since 1890. I have known you unknown since 1890. I found that incredibly romantic. U m, here’s this very interesting gentlemen, very historic figure. U m, u h, who in his mind had known Helen even since she was a little kid, her story had inspired him.
Paul Ferrara: 31:11
Did you know you can see the contents of those archives on your computer? AFB has digitized the entire collection. Look for the link in the show notes. We also had the pleasure of honoring artists who are blind and visually impaired during our InSights Art Ceremony. We received 202 pieces of art this year with 56 artists receiving juried awards. The winners, with some funny stuff mixed in, is available on YouTube. Again, you can find the link in our show notes. It should go without saying that our keynote address provided some great highlights for the event. Our keynote speaker, Paralympian Tyler Merren, encouraged everyone to decide on the possible and find the champion within ourselves.
Tyler Merren: 32:03
And that takes us to this next point. You know, my friend taught me that you can’t let fear decide for you. And what he did is he took that next step. And , and literally the verb take, okay, taking full ownership of the situation, taking full ownership of your life. So, you know, as I got a little bit older, again, vision was decreasing. We moved from the farm , uh, quote , unquote into town, right? Where into town was that we had one stoplight, literally. Like everybody says, yeah, one stoplight well that’s, that’s literally what we had. And I moved from a , uh, an area where the houses weren’t a mile apart, but they were 300 yards apart. We lived on a street where cars went very fast and , and pretty much I was at my house. Like I was kind of trapped there. I had a friend who came over and visit me. So this is a different friend, another mentor, again, better together. Right. We are sharing our experiences. My friend comes over and he’s hanging out and he’s like, so what do you want to do? I was like, I don’t know. We’re kind of stuck in the house. We want to just play some video games. He’s like, no, he’s like, what are you what’s downtown? I was like, well, not much, but we can’t really get there. He said, why not? And I was like, well, I don’t know. And then he’s like, all right, cool. Get your jogging shoes on. Let’s go. And we did. We ran , uh , as far away from the street, as we could stayed on the edge, we jog two miles into town and just had a really good time with it. Right? We I’d showed him like, Hey, there’s the ice cream shop. And there’s the dollar store. There’s I guess not much else here, but you know, it was a lot of fun. And what I learned from that is that the second step to seeing that true champion within yourself is taking full ownership. The first look beyond that fear, don’t let fear decide for you. And the second is take full ownership. I decided then and there that I wanted to learn how to use a cane and learn to read braille, because that was something I was going to need in life. And here’s the, the nutshell , uh, concept of this. Nobody is going to take success for you. You have to take it for yourself. Take full ownership of your situation and own who you are as a person and what happens in your life do not allow your circumstances to dictate and put you in a box, right? And once you are in that position where you’re saying, okay, I’m going to take full ownership of my life. I am going to be responsible for who I am and what I become the next step becomes, decide. Okay, well, decide what? The great Henry Ford was quoted to say, “whether you think you can do a thing or whether you think you can not, you’re right.” And essentially what he’s saying is it’s up to you, what you’re capable of. So that third step to , to seeing the champion within, to , to bringing that champion out is decide that it’s possible
Paul Ferrara: 35:15
Before we play our final highlight from Dr. Meador, please look out for our next episode of Change Makers on November 5th. We’ll talk about our ongoing series of webinars called Access Academy and about the APH Hive where we will house various educational offerings for the benefit of everyone in the field. Don’t forget to check the show notes for full recordings of the Annual Meeting and until next time, be sure to look for ways you can be a change maker. We will end this episode with Dr. Meador’s call for everyone in our field to remember that our work is important in the struggle for civil rights and justice. Thank you, Craig, for this timely reminder!
Dr. Craig Meador: 36:01
All right. I want to , uh, to talk a little bit, I’d be remiss if I didn’t about Louisville and , uh, cause many of you , um , have been following the news. And so I have a slide up here that says the ties that bind us together and some closing thoughts. Several of you have asked that have been watching the news as to the events that have , uh, gone on in , in Louisville, these, these many, many days. And some of you are from cities that have been impacted in similar fashions. And so I have two pictures up here right now. One is , uh , fourth street and this was taken a few weeks ago and there’s windows are mostly boarded up and there’s barricades up. And then to the right, you see a gathering of , uh , protesters during one of the nightly , uh, meetings. Um, we have had over 130 nights of protests , but I am proud to say very few, almost very few of those had been violent. The majority of them have been incredibly peaceful. Um, and I’ve had the opportunity and have been invited down to several of those events and it is just an amazing thing to be a part of. And , uh , so I want to talk a little bit about what we’re going through because at first I was, you know, when we’re thinking the annual meeting, we’re like, Oh, we’ll get everybody here. We’ll get things back to normal, be so good to see you. And then when the reality came is that you’re not coming. We thought, well, maybe it’s for the best because the city is in such uproar right now. And wouldn’t it be embarrassing if you came here and everything was boarded up. And then the more I thought about that, the sadder I became, because I thought, you know, there’s a, there’s a tie with what’s happening in Louisville and in , in Wisconsin and in pretty much every major city in the US right now. And it really ties back to our field, ties back to our field. Louisville’s like most major cities. Um, I, I would be the first to say, there’s systemic racism throughout all the city . That’s not saying there’s lots of bad people. We do have some of those too, but it flows through all aspects of our community. If we’re truly honest with that, we know that to be true. We know that to be true. But like I said, we’ve had 130 days of , of protests and it’s very different than what’s portrayed on, on many of the news channels. It’s , it’s frustrating to participate in some of this stuff and go back and you turn on CNN or any of the other stations? You’re like, Oh gosh, you got it wrong. You got it so wrong. That is not what happened. We were right there. That’s not what happened, but that happens. You know, the news is basically soundbites and, and uh , quick hits and you’re missing the whole story. So I don’t want to politicize, this is not my, my idea, but I want to connect you with Louisville at a deeper level. And this ties back to our field. So I’ll catch my breath and then we’ll go , Um , our field field that , uh, you and I are so privileged to serve in our field was built upon the idea that blind and visually impaired people would have equal access to education, work opportunity. And we’ve had many giants in our field that stood up and determined that this idea of second class citizenship Would never, ever be. Okay. So you had people like Helen Keller, Robert Irwin , Bob Atkinson , um, who all had a hand in moving legislation forward. Um, we had many later voices. You, you had , uh, Ken Jernigan again , and many others that would make sure that this work would continue for to this day. I mean, this is a lot of what the Kirk Adams does and Mark Riccobono and Eric Bridges, and the many other agencies out there that are continuing to be that voice in Congress and continuing to be that voice , uh, on the streets and in the cities about this idea of equity and rights. And then you have people like us, or I should say people like me, cause not everybody that’s watching, this has sight, but I would consider myself , uh , uh, an ally, sighted ally. And we’ve been a part of this movement from the beginning to , and if you look at the Hall of Fame , uh, we had two great candidates who were introduced to that last night. Um, but if you reach way back, you find Migel, you find Hall, you find Howe , um, you know, there’s there . And I count all of you in there too. You’re all drawn to this field or you fell into this field and you could not leave. Occasionally. Some of us will leave the field for a while or some will leave the field, but they usually find themselves in another movement , um, that is doing similar work. And there’s this connection. And what I want to say is, is this connection is basic civil rights. I think we all know that. So what is going on in our nation right now, as many parallels to the work that you do every day, you are fighting against biases in the system. You’re fighting For your students, your clients, your parents , families, you believe they deserve better. And you’re working hard to create that you want fairness and you want a level playing field that is very often denied. You are all civil rights advocates. So without getting too political, I want to leave you with one thought. And that is the work you do be it, special education, adult services, rehab, whatever you want to call. It’s all about the work of civil rights and civil rights is all about social justice.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Paul Ferarra: 0:18
Welcome back to Change Makers, a podcast from American printing house. I’m Paul Ferrara , part of the communications team at APH. Did you know that more than 60 of the most prolific contributors to our field are honored as part of the Hall of Fame: Leaders and Legends of the Blindness Field? Today, we’ll learn more about the hall from Mike Hudson from the APH museum, but first it’s almost time for APH’s Annual Meeting of Ex Officio Trustees and special guests. It will take place from October 7th through ninth, and it will be virtual. Joining us to talk about this year’s event are Craig Meador, APH President and Leanne Grillot Director of Outreach Services. Craig, Leanne , thanks for joining us today.
Craig Meador: 1:03
Good morning, Paul.
Leanne Grillot: 1:05
Good morning .
Paul Ferarra: 1:07
Craig, APH made the difficult decision to make Annual Meeting virtual this year. Can you tell us why you made that decision?
Craig Meador: 1:14
Well, I mean, other than the obvious , uh, COVID , uh, with this, I drug my feet on this, to be honest, I think the rest of the team was saying back in May, there’s no way we’re going to be able to pull this off. And I’m like, nah, it’s going to get, hopefully it’s going to get better. And you know, and , uh, I am by no means a science denier , uh, but I was hopeful that something would happen that, but it came to a point, I think it was June , um, where, when we saw every other conference, not just conferences for the summer begin to fold, but all the fall conferences beginning to pull the plug. And when we started seeing national conferences scheduled for January and February begin to pull the plug it , uh , and the world wasn’t getting better numbers were just going up, up, up, up, up. And at that time we decided it was in everyone’s best interest to , um, to not do Annual Meeting and , uh , in the ways that we’ve always done it, which was heartbreaking for us. Um , Annual Meeting is , is probably for the field one of the most special times because it’s a homecoming. Um, I often refer to it as , as grandma’s house and I’ve told our staff here several times, we’re grandma’s house coming to Louisville is coming to grandma’s house. People come to see us, but in essence, they’re also coming to see their extended family, their friends, and their family. And so it’s our job to put on, to be an incredible host and facilitate relationships and opportunity for people to connect with each other. And that’s a big part in the field that comes together every year at Annual Meeting. That’s probably richest thing. It’s , it’s not just the sessions, it’s all the stuff that happens before and after and in passing and during lunchtime . And you have the Council of Schools for the Blind that takes a few days on the front end and the National Prison Braille Network. Um, and , uh , the Keystone Library Association and the STEM meetings, there’s all these groups that use the front end of annual meeting to come together and can reconnect and not just reconnect and , but also strategically plan their activities, their next steps for the next, for the upcoming year. So it was more than just canceling Annual Meeting. It’s basically pulling the rug out from underneath all these other agencies saying, hey folks, you’re going to have to do something different. So I think that was a sad thing, but it’s the right thing to do. Those were the decisions. Those are, which all seem pretty textbook, I guess now looking back at it. But at the time it was wrapped up in a lot of emotion. Um , um, so the new challenges , how do you, how do you still create that a wonderful inviting , uh , fun environment that is virtual and lucky for us? Again, there’s a lot of people who stepped into the space already. We saw AFB do this last spring. We saw NFB and ACB do it this summer. And they have, we’ve learned a lot from them. Uh, we’ve seen how to do things, right, which we really appreciate that there were some pioneers before us. So we feel confident that we can , uh , create a fun virtual environment where as if you’re not careful, you might learn something before it’s done.
Paul Ferarra: 4:45
So what, if anything is going to be different this year, then about the meeting now that it’s virtual?
Craig Meador: 4:52
Well, no, one’s going to need to bring stretchy pants. So , uh, you know, cause the other rule is when you come to APH, usually put on five pounds by the end of the week. So , um, unless people choose to do that, that’s on them. Um, so we won’t overfeed people and we won’t, over-serve people , um, you know, so that’s going to be up to them. But as far as structure, I’ll let Leanne address the structure of annual meeting, how that is going to look a little different this year with, with the virtual environment.
Leanne Grillot: 5:26
So what we’ve done is we’ve structured the three days to help break up your space. The first day is Wednesday, which is really a pre-meeting day, longer stretches of time to really get deep into a topic or a subject. And then that evening we’re kicking it off with , um , a tour of APH, a , the hall of fame, induction ceremony, and just kind of a welcome reception, a more fun time to kind of talk to individuals. When we get into Thursday, we’re really heading into the meat of the conference. And those are hour long concurrent sessions, which are probably a similar feel to what you would have, even in a traditional setting face to face where you’re going into different groups for a period of time in the middle of the Thursday, we’re going to have our keynote speaker and our report from Craig on the state of the company. Some of these things are required also because of federal law and holding this meeting. And then that afternoon we will continue with concurrent sessions. Late afternoon, we are required to have our ex-officio trustees meeting. And so there is a time specifically for them on Thursday evening. Again, that’s the requirement, but then if you’re not wanting to go to any of those meetings, you have a storytelling tour, which is really giving you an opportunity to hear more about APH itself. Friday is the probably shortest session time feel. So remember Wednesday was that long time Thursday it’s a little bit shorter. Friday is more of an information fair allowing you to learn about all of the products and services available through APH, almost like walking through tables. So there are little half hour sessions where you can pick and choose a few of them and get a real good understanding of what is available out there. It should really kind of wet your whistle and give you an idea, but your brain is probably already starting to get full from Wednesday and Thursday. So this is a way to help break that up. Also on Friday are our large general sessions, which are going to have quite a few panel discussions to be able to hear how things are going out there and how people are doing things. And I do want to make sure that you know, that there is also a, we are still doing our insights art ceremony at the end of that day on Friday. And at the very end, after the ceremony, we have a special closing ceremony and I’m just going to let you know that it’s going to be pretty special. So it’s something to work , uh , grabbing your beverage of choice and sitting down and watching our closing ceremony.
Paul Ferarra: 8:08
Leanne , can you discuss the theme for this year better together, especially in light of all the things going on in the world.
Leanne Grillot: 8:15
So better together is a way for us to really think about how we come together and think about, and problem solve how we work with our students and our clients to serve them. And we have found through COVID that even though things have drastically changed on what you are doing in some ways, our world has actually opened to have better communication, actually reaching out to one another sharing information, getting people together who might have never gotten together before having Alaska join in Puerto Rico join in, all at the same time and share information. And so this is also giving us the opportunity to be better together with Annual Meeting. There are quite a few people who have really never been able to travel to Kentucky, to join us for our Annual Meeting, whether that’s financial or time constraint, where this year being virtual, we have the opportunity to invite the world, to join us, have more international guests, join us as well as boots on the ground. People in the field who are usually working with students, and could not spend those entire days in Kentucky. Now that could come to Annual Meeting to the sessions that can fit within their schedule. So we are definitely going to be better together for the first time really ever for our Annual Meeting.
Paul Ferarra: 9:35
Can you tell us a little bit about our keynote speaker this year?
Leanne Grillot: 9:38
Sure. Our keynote speaker is Tyler Merren and he is a three time Paralympian athlete. He also , uh, for his business as a personal trainer. So he also does personal physical fitness training. And you can definitely find some of his videos on YouTube. He was born in Michigan. He has , uh, retinitis pigmentosa. And even though he has that, he has really worked hard to gain all of those knowledge and become an elite athlete. And his , uh , Paralympic sport is global. So we have many people who are very familiar with Goalball, but it is a sport played, no matter how much sight you have, you wear a blindfold. And that again makes it a very equal ground, but he is also a husband and a father. So I’m really looking forward to listening to his story.
Paul Ferarra: 10:31
Can you highlight a few of the other sessions?
Leanne Grillot: 10:33
Other sessions. Wow . We have quite a bunch out there for you, everything from really thinking about braille literacy and how we get braille into the hands of our students , uh , low vision devices and how people can use their low vision devices to access information. We have babies count session and on the information that’s coming through with a baby’s count, if you were part of the survey about access for our students, we have a session about what we’ve learned through that access and engagement survey that went out throughout the United States and Canada. We have at home activities for students with cortical visual impairments. If you’re interested in our APH Press books, we have sessions where you can learn about which Press books have been released, which ones are coming up. The tours are going to be very unique. So even though you might not be walking through our building physically, you will get some deep in depth, look at the different areas inside APH. So if you have always wanted to know how that product was made, you might actually get a chance to see it being made. There’s also a large session about how we can be better together utilizing our professional organizations of AER and DVIDB. There will be a group session together. Them really thinking about How we work together as a field with our professional organizations.
Paul Ferarra: 11:59
Craig, we know you’re going to have your state of the company presentation. So are there any previews you’d like to give us from that presentation right now?
Craig Meador: 12:07
Um, well there’s always the usual, Hey, we, we made products, we got rid of some products, we got some new products. We made some money, we lost some money. Uh, so there’ll be that , uh, and kind of what our reach and scope is, but probably what I want to do focus. Um, we started a shift about two years ago at APH and , and we talked a little bit about that shift, but I want to flesh that out a little more. One of the goals I’ve told the staff here is APH is , has for the last probably 40, 50 years been, well, let me go back probably about the last definitely the last 30 years , uh, um, has been about products, but it’s also been about service and, you know, I would say 80, it would probably, it’s been about an 80, 20, 80% product base , 20% service space. But as COVID is really , um, shown us this year that in our field, the service, especially this year is probably more important than the product. So, and what I mean by that, I’ll break that down a little bit. So we, our number one product that is most people know is braille paper, a boxed up braille paper that gets out to folks, okay. And that may not be our biggest number 1 dollar product, but that’s definitely our quantity, quantity product. So we have all these wonderful products and kits and tools, which people love and they use all the time. But when you get right down to it, what people needed during this COVID time was someone to talk to , uh , they had hours to fill within their day or suddenly they were faced with new technology that , uh, because of pre COVID, there were so busy running around. They didn’t have time to really understand how to use a particular APH assessment kit or a piece of technology. Now they have time on their hands and they’re thinking I really need to use this time to hone my skills to better inform and train , uh , my student or you had families joining us in on training sessions saying, teach me how to use the technology so I can make sure my child has quality education. And we had students who basically said, I need to know this technology. So what was highlighted was we went from like being 80, 20, 80% products , 20% service this past year, it’s been 50 50. So yes, we’re still selling a lot of products and products are moving out the doors due to , uh, because of , uh, our quota numbers. Um, but because of COVID, we’ve seen the demand and the need for service increase. Um , and so this is a lot of the work we’re doing in the Hive, where we are developing this online platform that will help develop , uh , develop and deliver already existing content that’s out there and how tos and lessons and, and just being a point of connection for the field to get them the services they need in real time, because someday COVID will be, it’s not going to go away, but at some point COVID, we’ll, we’ll get a handle through vaccine or whatever. We can create a safer world and we expect people to be back in the classrooms and we expect , uh , it’ll be a new normal, but uh, more of a more familiar, normal we’ll return to our world. And so we’re using this time at APH, to really position ourselves to better meet the world that’s coming , um, better meet the needs of a , you know, it’s, I think the world has shifted and some things are not going to go back to being the way they are. Universities are seeing this schools are seeing this , um, you know, and it’s impacting , um, the needs of the field as well. Our field has always been a field that has been quick to , uh, to adapt and quick to be , uh , proactive when they, when they see challenge coming. And so we’ve been able to do the same. So we’re going to spend probably half that time in a state of company talking about our new steps. But our goal is within five years is, is that we will have our , our product offerings will be huge and wonderful and great, like they’ve been, but our service offerings will be equally as great and huge. Um, and the way we’re going to do that is we are going to rely on, is it goes back to this concept of better together. We’re building the platform. We’re going to be reaching out to all the organizations and individuals that know how to do it , um, to get their content on this platform, because we want this to be a resource , uh, for the entire field for generations to come.
Paul Ferarra: 16:58
Alright, so Leanne, what are we doing for social events?
Leanne Grillot: 17:03
So we have a few different social events available. One of the first really is the special tours that we have in place. So that’s a unique , um, uh , time at that point to be able to learn a little bit more and socialize . We also have , uh , the social aspect of our different ceremonies that we have with the InSights Art and the Hall of Fame induction. Those are more of a social event where you get to interact and have , um , an understanding from our field, but there is also going to be meet and greet reception time, as well as an open hall time where you have the ability to interact with people. And so that is, is something to drop into when there’s a session that doesn’t quite meet your needs out of the pick that you have. And you have another place that you can go to, to interact on Friday. The information fair is built in a way that people can interact, not only with the APH staff that is there, but with each other, those are more of a meeting room setting, where there is more interaction with one another about the topic at hand. So realize that some of those, some of our sessions are really built to be more interactive and be able to communicate with the person virtually sitting next to you, as well as the person who is from APH presenting.
Paul Ferarra: 18:31
Will sessions be available later on YouTube?
Leanne Grillot: 18:35
They will, we are recording our sessions so that people have the opportunity to catch the one that maybe didn’t hit their time zone. We’ve had many people who are international who have been joining in on our other webinars that we’ve held. And so we want to make sure they have the opportunity as well to join in . So yes, these are being recorded and will be placed on YouTube. Hopefully people have a little bit of patience because that’s quite a few videos going up at one time. It does take a little bit of time to get them all posted.
Paul Ferarra: 19:03
And finally we’ve always have the InSights, Art banquet, and Hall of Fame ceremony to look forward to. So how will attendees participate in those events this year?
Leanne Grillot: 19:13
So those are a registrated event , uh , to be able to sign up for APH. And then you go in again, everything’s free. So you can definitely join and tell your friends to join in, but the InSights Art ceremony, and the… lost my brain…
Paul Ferarra: 19:31
Hall of Fame…
Leanne Grillot: 19:31
The Hall of Fame, thank you, and the Hall of Fame will both also be livestreamed so that people have the opportunity to catch it that way as well.
Paul Ferarra: 19:40
This has been really great information. I hope, everybody’s looking forward to Annual Meeting just as much as they normally would. We want to thank you both for being on the podcast today. Really appreciate it.
Craig Meador: 19:50
Thanks, Paul.
Leanne Grillot: 19:52
Thank you, thank you. Looking forward to it.
Paul Ferarra: 19:55
Thank you, Craig and Leanne for that information, and don’t forget to check out the URL provided in the show description for more details about Annual Meeting. Another important part of Annual Meeting is the ceremony to induct new members into the hall of fame. Mike Hudson, Director of the APH Museum, is here to talk to us about the Hall and the new inductees. Welcome in, Mike.
Mike Hudson: 20:18
Thanks, Paul.
Paul Ferarra: 20:18
So let’s talk a little bit about the Hall of Fame. Tell us, first of all, what is the Hall of Fame?
Mike Hudson: 20:25
So the Hall of Fame for Leaders and Legends of the Blindness Field is the field of blindness gathered together in one very special place , uh , in a very historic part of the American Printing House for the Blind in Louisville, Kentucky, and the , the hall consists of 64 of the most well known, the most significant, the most influential people in the, in the field of blindness who , um, have been inducted into the Hall of Fame. And , uh, it started , uh, in 2002 were the first inductions and every year, since then there have been several inductions. And , uh , each one of the inductees , um, gets a original relief plaque of their face that is , uh , crafted by one of the model makers at APH, a very talented young man named Andrew Dakin . Um , and that goes on the plaque. Um, and then in the hall of fame, we also have a lot of , uh, graphics artifacts , uh, videos that kind of tell the story of each one of these significant people.
Paul Ferarra: 21:42
How did the Hall of Fame end up at APH?
Mike Hudson: 21:45
Yeah, so the Hall of Fame is, is, it is a collaboration of the entire field of blindness. Um, it is not owned by the American Printing House for the Blind, but , uh, in , uh, 2001, the Printing House volunteered , uh , to host the Hall of Fame and , uh , it’s installed on the second floor of our , um, 1924 annex , um, a place that used to be filled with , uh, stereographs machines and , and printing presses and the machine shop at APH, which are all now in different parts of the building. But so it’s a very, very special historic place for the field of blindness.
Paul Ferarra: 22:27
What does it take to be considered for induction?
Mike Hudson: 22:31
Well, I guess it starts right out there in the name of the Hall of Fame, right? Leaders and Legends. These are the people who broke the ground for everybody else in the field. These are the mentors, the teachers, the teachers of teachers, the people who founded the institutions that , uh, that shaped the work of blindness. And so there is a nomination process. Uh, you can go online to our website at aph.org and find the Hall of Fame’s website. And the nomination process is there on that website, but basically you submitted a nomination along with a couple of letters of , uh, of recommendation and then the , the board of governors evaluates , uh, uh, numerous nominations each year. And they vote on whether or not you get to get into the Hall of Fame. And the, the , uh, uh, the laundry list of the people who’ve served on our board of governors are filled with people who are in the Hall of Fame themselves. So these are, these are also people who are significant leaders in blindness.
Paul Ferarra: 23:39
Can you give us an example of some of the 64 names that we have in the Hall today?
Mike Hudson: 23:43
Sure, sure. So of course, everybody knows, you know, the most famous teacher of the blind, right. Annie Sullivan, right. And her famous pupil, Helen Keller, who goes on to be an advocate for women’s rights and civil rights and all travels all over the world. Then it’s also people like people who became famous , uh, printers , uh , embossers like a fighting Bob Atkinson out at the braille Institute, famous leaders inside the blindness field, like , uh , Dr. Jernigan or , uh, um, also , uh, people who became teachers of teachers, like , uh , one of our , uh, inductees term last year, dr. Lou Alonso , um, also people who wrote the books that , uh , we teach our students with those famous seminal books. Those, those people in there , people like Dr. Thomas Carroll who , uh , introduced the idea of geriatric rehabilitation , uh , rehabilitation for people who lost their vision late, late in life , um, and on and on and on, you know, another, a good example would be somebody like , uh, uh, um, Arnall Patz. Arnall Patz is the, is the physician who figures out that it’s too much oxygen in the , uh, and the incubator that’s caught that caused this big , uh, epidemic of retrolental fibroplasia in the middle 20th century, 20th century. So all kinds of different people who, who made, who made it possible for the field to exist as it does today and influence the lives of so many people who are blind and visually impaired.
Paul Ferarra: 25:28
I understand that also another part of the Hall is something called a Wall of Tribute. Can you tell us about that?
Mike Hudson: 25:34
Sure. So the Hall of Fame is the 64 giants, right? But everybody in their life in their career has been influenced by so many teachers and mentors and leaders and supervisors and friends. And so the Wall of Tribute is a place for you to honor the people in your life that made a difference. It might not have been one of these 64 people, but in your life have been very special people. So the Wall of Tribute is a series of columns with a stones engraved with a message that you select. And that Wall of Tribute is important in a couple of ways that it helps people to honor all of these other often perhaps forgotten heroes in their lives. But , uh , the, a Wall of Tribute is actually what pays for the activities of the Hall of Fame. It pays for the kiosks, the creation of the , uh, of the , uh, the plaques that are awarded to the , the , the inductees. And it pays for the operations of the Hall of Fame.
Paul Ferarra: 26:42
Can you tell us about the 2020 inductees?
Mike Hudson: 26:45
Sure. We have a couple of really outstanding ladies in our class of 2020 , uh, Dr. Kathleen Huebner , uh, started her career working for 10 years for the American Foundation for the Blind, where she was involved with a lot of different national initiatives there from , uh, for the next 20 years, from 93 to 2012, she prepared TVIs and O&M specialists at Salus University in Elkins park, Pennsylvania, and then her career culminated in two groundbreaking collaborative national consortia, the National Center for Leadership in Visual Impairment and the National Leadership Center for Sensory Disabilities, and Dr. Huebner is the recipient of the Migel Medal from AFB , the Josephine Taylor Award, and the Ambrose Shotwell Award from , uh, uh, AER the Mary K. Bauman Award, and the Warren C. Bledsoe Award, just multiple award winner. And then the second is a Canadian. Dr. Ann MacCuspie , uh, Dr. MacCuspie began her teacher career just as a teacher at the Halifax School for the Blind. Eventually worked there for many years, became director of programs and services, and her research focused on the social interaction of children with visual impairments, which eventually resulted in her publishing her groundbreaking book, which was Promoting Acceptance of Children with Disabilities: From Tolerance to Inclusion. And in 2008, Dr. MacCuspie received the prestigious Order of Canada, the highest award for civilians in Canada. So two very influential, very well known ladies in the field of blindness and we’re really honored to add them to the Hall of Fame this year.
Paul Ferarra: 28:33
That’s going to be exciting. We’ll have 66 members in the Hall of Fame once this happens. So , uh , we look forward to that ceremony and thank you very much for coming on today. Mike,
Mike Hudson: 28:44
Thank you very much.
Paul Ferarra: 28:47
For more about the hall of fame. Check out the URL in the show description. While we prepare for and host Annual Meeting, the podcast will take a hiatus with the next episode coming to you on October the 22nd. On that episode, we’ll recap, annual meeting and play highlights from several of the sessions. That wraps up today’s episode. Until next time. be sure to look for ways you can be a Change Maker.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:15
Welcome back to Change Makers, my name is Jonathan Wahl. Today we’re talking about representation in the media, specifically how people with disabilities are portrayed over the years. We’ve seen this done well and also really poorly. Thankfully, there have been some great steps forward in positive in real representation. This means not only showing people with disabilities as capable and strong, but also casting people with disabilities. Today we have two exciting guests. Joe Stretchay is a Producer and Blindness Consultant who’s worked with companies like Apple TV +, Netflix, and Scholastic to name a few. He works to ensure people with disabilities are properly represented. But first, actress Bree K lauser is here to talk about s tarring in a brand new audible series Phreaks and also her r oll in SEE, a new show from A pple T V +. Bree thank you so much for being on Change Makers.
Bree Klauser: 1:08
Thank you so much, Jonathan . I’m so happy to be here today.
Jonathan Wahl: 1:11
Bree, can you tell me a little bit about your acting journey and just how you got to where you are today?
Bree Klauser: 1:16
Of course. So I was into music and performing arts from a very young age. I was that kid who would never stop singing and my mother took me to my first Broadway show when I was six. It was Les Miserables, which is, you know, very , uh, heavy for a six year old, all the prostitutes and tuberculosis, but I was intoxicated with it and I wanted to be up on the stage. So that’s what I thought I wanted to do. So I pursued singing lessons, acting, lessons, dance classes. My mother would bring me around to auditions for community plays and then eventually projects in the city. At the same time I was studying voice and learning classical technique, jazz ,musical theater, pop. And I went to college to get my degree in acting from Brooklyn college. I got a BFA at the same time. I was studying through an ex boyfriend of mine. I was introduced to the late metropolitan opera tenor Francisco Casanova. Unfortunately he just passed away this past year. I miss him very much. I was student of his for nine years. So I got my degree. And for awhile I was pursuing music a little bit more. I had a music project with my partner and we called it Bree and the Whatevers. We released a music video back in 2016, all the while I was performing here in New York in the downtown theater scene. And then around 2018, I kind of made a transition to focus a little bit more on, on camera work. And that is when I got the opportunity to send in a tape to audition for SEE and I booked it without even meeting anyone. I sent in two tapes and they said that I was meant for the role.
: 3:05
I went out to Vancouver in fall of 2018 to shoot SEE with my first onscreen role in this huge world building project with Jason Momoa and Alfre Woodard. And so that was in 2018 leading into 2019. And I also got involved in voice acting after college. I started taking some classes in voice acting and doing, you know , smaller projects here and there auditioning for commercials. And a friend actually had told me that through, I guess, the American Foundation for the Blind, that they were looking for a blind or low vision actress to play this role of Emma in this new Audible original series called Phreaks. And so I recorded this audition right here in my home with my boyfriend and I booked that role. And I, it last summer I recorded Phreaks at Audible Studios and that , um, that pretty much brings you up to today.
Jonathan Wahl: 4:04
Thank you so much. It’s so great to learn about all of your different roles. Were there any perception hurdles, or anything you had to overcome getting into the industry at all?
Bree Klauser: 4:15
Oh, absolutely. For years I wouldn’t even identify with my disability. I am legally blind. I was born with a condition called achromatopsia but I am on the high partial scale of low vision. So I don’t use a cane and I don’t have a guide dog. So I don’t really have any of the classic identifiers besides maybe wearing some glasses outside. And I wear a tinted contact lenses that kind of make my eyes a deep, deep Brown with like Amber tones. So , uh, I would go to auditions and unless it was absolutely necessary unless, you know, they were going to make me cold read on the spot and I needed a enlarge script or I needed to decide ahead of time. I wouldn’t disclose my disability in fear of being discriminated against or thinking that I wasn’t capable to do the job.
: 5:12
I was very fortunate in my acting conservatory that , uh , I was never discriminated against with my disability and they’re all very accommodating with all the learning. But , um, if, if I ever did in an audition or even after booking a job, have to disclose my disability, I would never want to use the word legally blind because I feel like there’s so many stigmas and stereotypes that are tied to the word blind. Like the second I say , legally blind, they assumed it’s like lights out. You don’t know how to get around by yourself , all these negative stereotypes. Well , we know in the blindness community that we are independent, we are capable and that low vision legal blindness is a wide spectrum. And I think I’ve heard that like 90, 90% of people who are legally blind have some kind of vision or light perception that we just live in this world of darkness is , you know , a whole misconception. So I, even today I find myself shying away from the word legally blind, even though I am, I am over the 2200 limit after a correction. So , um, I think that that is how it goes as far as stigmas and even still today. I do, I do worry about being typecast and only blind roles where right now my real journey is to first accurately represent people who are low vision and blind. And then hopefully this industry over time becomes more open minded to call in people with disabilities, regardless of whether the character description says anything about them having a disability.
Jonathan Wahl: 6:52
Yeah. That’s, that’s great. And I know you’ve already been just a role model for a lot of people in, in, in your role . So we have loved following your career already. You already talked about your new exciting project Phreaks a little bit, the Audible Original that’s just been released. Can you tell me more about the premise of Phreaks?
Bree Klauser: 7:11
Sure. So Phreaks takes place in the 1970s, just as the end of the Vietnam War going on ,Nixon in office and Watergate. So it’s titled as a period drama. I like to describe it as historical fiction , because there was this group of phone hackers, almost like the first hackers and they were called the Phreaks. So the story follows my character, Emma Gable, who is a 15 year old blind girl living in a little town in upstate New York, who is isolated to a sense in her community. She’s very much a child of the seventies in that she is rebellious and wants to make a change, but you know, she’s introverted. So she’s not able to really find her voice until she finds this community with the phone freaks and when, and when she meets these people, it’s , it’s very similar to, I would like to say the way a low vision blind people connect on the internet these days and find their community and then make meetup groups.
: 8:16
So I feel like she’s very relatable to both low vision and non-disabled audiences because , I’m a kid of the nineties. I grew up in nineties and there was a big seventies revival in the nineties. So I was like Daria of the seventies. And I brought a lot of that into the role . So she’s got a little bit of Daria , a little bit of Juno . So the way that she looks at things is very matter of fact, very deadpan kind of blunt humor, but she still has this great emotional life and everything is just kind of right under the surface with her. And we get to see her experience that through these episodes, all these traumatic things happen and what it’s like building these friendships, you know , discovering this whole new world that she didn’t know about for all her life.
Jonathan Wahl: 9:08
What was it like to be a part of the project and get to go to the Audible Studios? Any highlights from your recording time?
Bree Klauser: 9:15
Yeah, it was really cool. Uh, I would go out to the audible studios in Newark, which is a really, really nice building. Everyone was really friendly state of the art recording studio. They were really great with accommodations and as far as , uh, being able to work, cause I do read large print text . So within five minutes, me and the studio engineer were able to figure out, okay, we’re going to use this standing desk and put the iPad on a stand and put, put it as close to the mic as possible. And that was it, no fuss, no muss. We recorded this around this time last year. And it bled over a little bit into October. I would say it was when we were doing the last pickups of the project, but it’s all done pretty quickly. And unlike stage and screen, you don’t necessarily go in there memorizing the text.
: 10:11
So it was a different kind of process, especially as the low vision person I’m used to having to memorize things really quickly. And when you do that, you lose a little bit of the spontaneity. So I really loved discovering the text for the first time with a director. And a lot of the time I was reading with a reader and not the actual actor that you hear on the recording. Unfortunately, I didn’t get to meet Christian Slater and Carrie Coon and Ben McKenzie and Justice Smith. I really would love to meet them. I love if a this cast ever gets a premiere or a zoom party, that’d be so much fun, but I would read, read with reader and we would enact those scenes. Um , there were one or two other characters I did get to do live reads with, and that was really fun to have the other actor to bounce off of. I learned a lot of new skills that I had never done before. Even though I had done voiceover, they were primarily for animation and commercials with this. It is, it is an audio play, but I would say it’s more like an audio cinematic experience. So you’re using your whole body, even though everything’s just coming out in your voice and your little tricks to make the expressions come out the way you need them to like the director would say since Emma’s very shy and you know, a lot of things that she would say maybe to ourselves , she would look down at her feet. And even as I looked down at my feet, you can tell the difference in the inflection. Or if I’m talking to someone across the room, you would go off axis a little bit and you know, a projector voice out this way. I think the hardest thing for me to learn was , uh , not be so loud and don’t talk so fast. So , but I feel like Shaina Feinberg is an amazing award winning director. And I feel like from, from the very start, she gave me all the tools I needed to succeed at this
Jonathan Wahl: 12:11
Audio podcasts , storytelling. It’s all so popular right now for someone who’s, you know, looking for the next thing to listen to. Why, why do you think they should give Phreaks a shot and listen to that next?
Bree Klauser: 12:25
Oh my goodness. So I, I actually just started listening to it for the first and this is like the first time I’m revisiting it in almost a year. So I listened to episode one and two last night and it is so immersive. Like, it really is like a cinematic experience for your ears. It’s not just talking heads. I really was transported to this other world. And I really, you know , in my mind visualized what this might look like, but I feel like for, especially for a low vision or blind audience, you don’t get anything else like this. I mean, there’s some great audio description out there for TV, but this nothing is left out the soundscape . And forgive me. I wish I knew who the sound designer for this was, but it’s so tactile that you just, you feel everything in sound and the performances, all of the emotion that you would maybe see on someone’s face or with a gesture you hear in their voice.
: 13:30
I think Carrie Coon who plays my mother Dorothea, she does this amazing job of portraying this woman who is suffering from an illness and , and portraying this with only her voice and with the sound of her breathing and her coughing and wheezing. It’s so heart wrenching, but the series is also really funny because Matt Derby is a really funny comedy writer. And I loved as, as a improv comedian myself, I loved swinging out those dead pan zingers , like, “Oh, you know what , me just switchblades and chlamydia all the time.” Like, I love that. Yeah. She’s just she’s. So, and that I was like, Oh yeah, that’s just me. That’s right. I can bring that part of me to Emma. Uh, so yeah, it’s, it’s a really clever writing and, and it’s edited in a way that it just , um , it really , uh, is really well paced. This isn’t the true podcast. This is, you know, something to listen to you’re you’re on the go or cleaning your house, doing your dishes, something that’s really engaging. Cause otherwise you might miss something because there’s just so much detail in this world.
Jonathan Wahl: 14:46
I’ve listened to the preview, the audio preview, and it is very engaging just the preview, so I’m excited to listen to the whole thing.
Bree Klauser: 14:53
Excellent.
Jonathan Wahl: 14:54
This is not your first main role. You mentioned also being a cast member of SEE with Apple TV +. Oftentimes when someone with a disability has a role on a big production, they play someone with a disability. They don’t get to be the hero or the lover or the fighter. What is it like in both of these roles to get to be more than just the person playing the disability, but to be the warrior, to be the nerdy geek on the phone, playing that kind of a role.
Bree Klauser: 15:19
Excellent. Um, well, first of all, it’s like, finally I get to do my job. I get to make a three dimensional person. And secondly, it’s empowering. Um, as Matal, I was a warrior and a presale page amongst as she , and she wasn’t the blind one. She was in a world where everyone is blind. So she was just like everyone else. Her disability was not her defining factor, her, her bravery and her, her extra sensory ability to feel emotions. These are her things that define her. And when , when we see her and , um, you know, what I’ve heard from people who have watched the show, even though , uh , Matal is , you know, a smaller supporting character in this ensemble cast, people have said that, Oh, I really liked your character. I wish I got to see more of her. Um, cause I really felt for her when, when she was, when she was killed off, because , because , um, because she is a three dimensional character and all the blind characters in this world are three dimensional and not defined by the disability and Emma on PHreaks. She is all three. She i , a hero, a fighter and a lover. She is, she is, she is the hero of the story. She helps take down this big evil company as we’re going to find out, but no boilers, but she does something huge with the freaks. Um, they are real revolutionaries, like the revolutionaries of the seventies, sixties, civil rights. She does something huge. And, you know, yeah , she’s a fighter. She is, she is not one to take things laying down. Uh, even though she is introverted, she does find her voice and always speaks up for what she thinks is right. And she even has a love interest, which like we never get to see, I mean, as a blind person and as a character actress, I never get the play the love interest and to, you know, be opposite of, you know, one of the hottest young actors in Hollywood justice Smith. Uh , that’s, that’s pretty cool. And I, I, you know, I, I frankly think in my honest opinion, after listening to that first scene, I do with him at the end of episode one, and remember I was never in the room with him yet, the way the performances came together, I really felt like my character and his character had a lot of chemistry. And that’s really exciting for me as someone who never gets to play someone who has a romantic interest. So it’s so empowering to finally get to do this.
Jonathan Wahl: 18:06
Why is it important for there to be real representation in Hollywood and in , in the media,
Bree Klauser: 18:13
Two reasons, one nowadays, people want to see themselves in stories and in media, on TV, in, in movies , uh , we’re way past the day where we just see the stereotypical, able-bodied, straight white male in every being the center of every story. Um , now we, we see so much more diversity in ethnicity in gender identity and sexual orientation. So disability should logically come next and has begun, but obviously there needs to be more because disabled people, not only do disabled, people want to see themselves on screen, but people who are affected by disability want to see that represented on screen because they may connect to a story more about someone who is blind. If a blind person plays it, because they’re seeing the , the authentic experience and they’re going to think, Oh, Oh, that’s just like my son who is blind, or my , my friend , uh , it helps the experience become more authentic when you have authentic representation.
: 19:23
Also it stops the perpetuation of stereotypes because when you have a nondisabled actor portraying the of character, they’re basically guessing and thinking, Oh, this is a cool acting challenge. And that really, really, really hurts me as a artist with disability, because I truly believe that disability is not a skillset. It is a lived experience, just like anyone’s race or gender identity or sexual orientation. That is a lived experience. You can’t fake it. And when people do fake it, and I know that there have been many good actors who have won Academy awards for playing disabled, you know, it’s you, can’t, you can’t fake the real thing. And I think audiences today are just way too smart for that. And they, they are hungry for that authentic representation.
Jonathan Wahl: 20:17
Yeah. I think one of the things , when I talk to my coworkers, my friends who are blind, it’s also so damaging when people assume that someone who’s blind, can’t navigate a set, or can’t be a part that that’s going to be a limitation. So they have to hire someone who’s sighted because the world still struggles to understand how capable, how smart and how able people with disabilities can be.
Bree Klauser: 20:44
Absolutely. And I think that is the thing that maybe is holding visibility back in the area of inclusion diversity. Cause we’re seeing strides made in other areas. We still, I mean, we still have a long way to go with race, equality and equity, but right now I think the industry is still hesitant about disability because they still perceive us as weaker as maybe not capable. And also they don’t know that trained performers who are professionals who have representation. They don’t know that we’re out there. The most common thing I’ll hear from, from an industry person. When I ask them about a role that they ended up going with a name actor who is non-disabled for a disabled role, they’ll say, well, we tried, but we couldn’t find it. And like really did you, did you really try? Maybe just try a little bit harder cause we’re out there. I find, I find more and more people with disability through online, through sharing stories. People who are actors with different disabilities. Although I would have to say there is , especially with low vision people and blind people it’s especially stigmatized because they, because they think that acting is such a visual medium and that you need to like see the other person so clearly to act. And there’s like, no, you just need to have a soul to do it.
Jonathan Wahl: 22:17
And you have one of those. So we’re good .
Bree Klauser: 22:19
I like to think I do. Yes.
Jonathan Wahl: 22:21
I won’t tell anyone differently.
Bree Klauser: 22:24
You just need. Yeah. I mean, I don’t want to say, see what your heart cause that’s, you know what, that’s another disability troep and that , um , I , I forgot to mention this. This is also why it is so damaging to not have people with disabilities portray themselves in , in media because then stereotypes are perpetuated because when you have disabled actors on set or in the studio, we can’t help but speak up about, you know, if, if something is written in accurately about our lived experience and if you’re with a production team, that’s worth its salt, like, like SEE or like with Audible’s Phreaks, they are going to listen because they want to put out the best product. And for their audience of people who may be disabled or may be affected by disability in their life. And the reason why we’re still fighting these battles of race, and equity, and discrimination f or people o f different backgrounds and d isabilities and orientations is because the last century that the media has been around, those stereotypes continue to be perpetuated. So the cycle needs to stop.
Jonathan Wahl: 23:48
Thank you. Your passion just came through there. And it was, you know, I wanted to scream. Yes, yes! Go Bree.
: 23:53
To young actors or actresses out there who have a disability, what do you want them to know? As, as they try to launch themselves into their own career.
Bree Klauser: 24:08
First of all, if you truly want to break into acting, whether it’s theater, film, voiceover, television, podcasting, anything research, and if you’re going to be an actor, please, please get training. Because as I said, the biggest problem facing us is they don’t know that people with disabilities, especially blind and low vision actors, they don’t know that we are trained and that we are professional or represented. So take an acting class. If you’re very serious, think about studying at a conservatory program and, you know, show that you got the skills to pay the bills and not just being like, well, I’m, you know, I’m a token showing up and filling a role because then that , that hurts all of us. If, if, if that’s how it comes across. And secondly, if you really do want to make a career out of this, I would first look deep inside yourself and think, is there anything else I can do? Anything else that I’m truly passionate about? Because this world we need, you know , nurses, doctors, teachers, especially blind teachers and educators and people who work with assessable technology. We need people to do that kind of stuff. But if you look at yourself and you say, no, there is nothing else that I was meant to do on this earth besides perform and tell stories, then go for 100%
Jonathan Wahl: 25:38
Bree for people who want to listen to Phreaks or follow you online, give, give us all the details of the, where to go.
Bree Klauser: 25:46
The Phreaks is available now on Audible. If you’re not an Audible member, you can try a 30 day free trial. For people who are already Audible members, Phreaks is available for free. It is a 10 episode series, but it’s available all at once. Kind of like when you listen to an audio book, it’s just one big package and each episode is a chapter and you can bookmark or binge it all at once. Right now I have the link available on all my sites on social media. You can follow me on Instagram, which I use the most at Bree_Klauser_Official and my website is Breeklauser .com . And the link is in the bio on Instagram. And , um, yeah. And leave a review if you like it, let’s get the word out.
Jonathan Wahl: 26:44
Perfect. Sounds good. Thank you, Bree so much for everything you do to represent people who are blind or visually impaired or have a disability, in the media. We hope to talk with you again in the future. Thank you so much.
: 26:58
I’ll include a link to Phreaks in the show notes, but if you’re searching for it online, it’s freaks P H R E A K S. While Bree was in front of the camera on Apple TV +’s SEE, on the other side of the camera was Joe Stretchay, ensuring actors and actresses knew how to best play someone with a visual impairment. Joe, thanks so much for joining me today.
Joe Strechay: 27:20
It’s a great pleasure to be on with you, Jonathan. Thank you so much for having me.
Jonathan Wahl: 27:25
You’re welcome. So for people who don’t know much about what you do, tell me a little bit about what you do as a consultant for different media companies.
Joe Strechay: 27:34
Yeah, I’m a producer and a blindness consultant. So I work with , uh , entertainment and media businesses, and whether it’s a production or the, the company , uh, a streaming network , uh , specific to characters who are blind and it could be one character it can be multiple characters and that can be dealing with , uh , the specific to the production working with , uh, the scripts. It could be working with , uh , the different departments, whether the art department as they’re designing , uh , sets or when the , or , or the set dressing, which is the objects that will be on the set , um, or props , uh, working in the props department as they’re picking what props do utilize , uh , the props. So the difference between set dress and props or props are the things that are actually handled by the actors and utilized in the scenes. So I help with that. And I train actors , uh, around the skills that people who are blind are having used in their everyday life and, and help to create a culture in awareness , uh, among productions about blindness , uh , uh, and also recruiting actors who are blind or low vision for different parts and whether it’s through casting , um, but also , uh , uh, making the, the whole process , uh , accessible the production, whether it’s the training and , uh, helping to figure out , uh, what will make that process and the production more accessible to those actors with disabilities. So it’s , it’s, it depends on, on the production, but I’ve also worked with some , uh, publishing companies around , uh, characters that , uh, in , uh, in children’s books , uh , that are blind or stories that they they’ve been writing , uh , to provide input around that too . So to make sure it’s respectful, but also , uh , brings some of that , um, knowledge around what people who are blind or like , uh, from my own point of view, as a person who is blind, but also as a person who has been professionally trained on my graduate work is around blindness. And I’ve also trained thousands of people who are blind or low vision.
Jonathan Wahl: 29:48
You mentioned a publishing company, and I know you’ve also worked in television shows. Can you just drop a few of the different names and groups that you’ve worked with. It’s pretty impressive and exciting for people to hear.
Joe Strechay: 29:59
Thanks, Jonathan. I , yeah. Um, I’ve worked with a number of shows. I think my first, like some of my early gigs were , uh, like , uh , helped the writer’s room on a USA network show called Royal Pains, just for a few episodes , uh , giving input as they were introducing a character who’s blind. And then , uh, later , uh , on Netflix , uh , Marvel’s Daredevil. I worked first on season one specifically for that show where I worked with scripts and props and set and , uh , the actors and background and such like that. Um, I also worked on the OA on Netflix in a similar fashion , uh, which was a great pleasure. And, and then Apple TV +’s SEE where I’m a co-producer for the show. And I was an associate producer on season one and a great pleasure where I get to work on so many different aspects. And , uh , uh, but also in publishing side of things, I’ve worked with Scholastic on a few projects, including a book series where they introduced in one book, they introduced , a principal character who is blind called Dragon Masters. It’s was a great pleasure to work with , Tracy West the author, and then work with Scholastic. They’ve been a great partner and friend .
Jonathan Wahl: 31:24
And Joe through all of this, you’re worked to have blindness properly represented. What’s the most important thing you are working to help the media understand as you do that?
Joe Strechay: 31:36
That’s a great question. I’m really passionate around the portrayal blindness, and it started out , uh, it was a road to figure out what that was, and from my own personal use as I was losing vision earlier in my life watching entertainment portrayals of blindness and wondering, like, is that what I’m supposed to be like? Is this , does this represent me and questioning that? And then my undergraduates around communications and public relations and media, and we had classes on media effects and looking at different groups and how they they travel from and become legitimized in entertainment. And whether it’s whether it was characters who are black characters, who are LGBTQ, plus how they navigated through the years and, and how that changed. And, a nd y ou c an look at that and you can see that with o ur disability population.
: 32:35
I started focusing on it and giving feedback to , and that’s how I got involved, but like, I want to make sure that blindness is seen and respected. And , and I, I make sure that I look at the research around the character and , and when they lost their vision and what aspects might be around it, what the world brings besides that and , and how that might cause it to be different. Um, but just making sure that they respect blindness and blindness, isn’t just seen as , uh , uh, something that limits people and, and, and a lot of cases of media when you see blindness represented, it’s a person in a hospital bed, or a person who needs assistance or, and in a great thing about some of the shows I’ve worked on, it shows people as independent and successful. And, and , uh, and, and I won’t work on shows where they’re not portraying blindness in a, in a respectful way and , and bringing that , uh , re realistic point of view, even in science fiction as well. Um, and , and I’m committed to that. And, and the productions I work with and the companies I work with , uh , whether it’s Netflix or Apple , uh, believe in that and want to see that true. And , and it’s helping the production understand that, like, getting them to understand that blindness is not, there’s not one , uh , blindness doesn’t come in one, one shade, you know, there are so many different types of liners
Jonathan Wahl: 34:03
You hit on something that I think is really important representation. Why is representation so important?
Joe Strechay: 34:10
Media representation is key in the media because you want to see yourself in the media, you, and you want to see it done , uh, done right. And authentic representation is, is a process. And getting people, actors who are blind or low vision, the training to be successful and getting them to experience where they can be at the highest , uh, highest level, and also getting them the recognition and noticed, and , and creating those opportunities is so important and making sure that those opportunities are there. And, and, and whether it’s in the casting process and making sure that people who are blind or low vision are getting that, that opportunity to audition and the right person for that part is getting the part. Um, I think it’s key , you know we’re, we’re moving along, you know, I can see in our show on Apple TV +, SEE, you know , we may have , Jason Mamon and Alfre Woodard, but we also may be creating the next Jason Momoa or Alfre Woodard who are blind or low vision.
: 35:19
And I think that’s important giving people a platform where they can succeed and show off their talents. When they come to the shows, I work on individuals who are blind or low vision they’re hired for their talents and their skills and how they can do the job, but also they’re provided a more experience than typical. And they’re provided a situation where people will advocate and , uh , and they don’t have to do all that if you see, and that’s not the case when they go to any other production. So on the day when they go to film, they can just show up and do their job. And that’s something different that most persons with disabilities don’t experience in the employment world and let alone in entertainment. It’s a great pleasure to help impact that at , SEE with AppleTV +. So whether it’s in our background or whether it’s in our actors in our show. And I think you’re just going to see more and more of that in other productions, and you do, and I , I think it’s exciting to see what this is us is doing and , um, the politician and other shows,
Jonathan Wahl: 36:30
Let’s talk a little bit more about SEE. I think one of the cool things about this show that you don’t always see, and you mentioned, This Is Us, that’s another one that’s doing this, but with SEE you have actors and actresses who are blind, who get to be themselves to , you know, they get to play warriors, but they’re not playing the blind person they’re playing a warrior. They get to be other characters and not just that person with the disability. Tell me a little bit about that and how important that is that we continue to see that happen.
Joe Strechay: 37:04
That’s a great question. And, and point, you know in SEE, from Apple TV +, when you’re seeing the characters, you kind of forget that they’re blind, because that’s not like, what is so important about the storyline or so important about each character they’re warriors, they’re, they’re villains, they’re they’re heroes, they’re lovers, they’re all of these different things where they were pretty much everyone is blind. So like the it’s all about the character. It’s really about what they’re doing in the world. And, and , and what I say at every event I go to, and when I meet people and I talk to people about the show is that in the real world, people who are blind are lovers, they are villains , they’re heroes, they’re all these things. They’re , they’re carpenters, mechanics, engineers, and being able to see people in this variety and where this is us, where , uh, you know, that that individual who is a person who is a low vision or legally blind, he gets to show up and do his job and act what he’s been trained to do and had experienced doing and what he loves to do, and blindness is part of the character. It’s not the whole character. And you’re going to see that being changed as of some of our , our show runner from season one left , uh , after season one, because him and his writing partner, John Steinberg, or other one of our other executive producers, started their own show. Another show that they created, and they built , uh , characters into, they brought actors who they knew have disabilities and built characters around them, not around their disability, around those people. So they’ll , they’ll have characters with disabilities, but it’s not around their disability, it’s around their talent, their skill, and what they bring to that, that character. And I think that’s the big difference, the big impact, you know, when, when you see things like that happening , uh , you’re seeing that change in entertainment.
Jonathan Wahl: 39:06
It’s been so exciting to see that progress, Joe , for people who don’t know what SEE’s about, can you give us just a little synopsis of the show?
Joe Strechay: 39:16
Definitely, the show SEE, for Apple TV + is really a story about a family, but when it comes down to it, you know, it starts off , there’s a viral apocalypse somewhere between now and 200 years from now , that kills off the majority of the population on earth. We’re down to just a few million people left on earth and all of those individuals emerged blind. And then our show play takes place a few hundred years from that point , uh, after people who have been blind for centuries and they build out civilizations and societies, but, you know, loss of civilization, people have fleed this virus into different environments and loss of skill levels, like technology and infrastructure, but you see the world rebounding, you see, because there’s such a small population, you see the earth rebounding, but it’s our stories about a family traveling through the world, a mother and a father , uh, trying to protect their twins, who, who are born with sight and , uh, and in a world where , uh , vision is, is probably it’s seen as possibly evil or it’s this misunderstood. And , uh, and where things have been pretty great. And for centuries , uh , without vision and , uh, people don’t know what to think, but these parents are trying to protect their family and they’re moving through the world. And that’s really what our story is about a family.
Jonathan Wahl: 40:46
I love how it kind of makes you rethink vision a little bit , um, flip things on its head. It’s, it’s a , it’s a really interesting premise. Joe , you have, you know, worked on, on some pretty cool shows. So I know you’ve seen and done some cool things. If you had to pick one or two things, what are some of those moments that just stickout in your career so far?
Joe Strechay: 41:09
So in my work with Apple TV +, and with the entertainment and my career, I’ve had some pretty unique experiences and I’ve been pretty lucky. Uh , one of those experiences was representing Apple TV + and SEE and an event for Variety where we were in front of at least 50 Emmy voters. Uh, and it was Dan Shots, the show runner season one and myself , uh , who would be representing SEE and , uh, right before us , uh, came Jennifer Anniston and Reese Witherspoon talking about the Morning Show and addressing questions about the issues that the Morning Show addresses and , uh , their portrayals and all of that and what they put into it. And then , uh , we, we got to go, so, you know, Reese Witherspoon, Jennifer Anniston , and then my buddy Dan. And so it was a pretty trippy experience.
: 42:00
And we were followed by Octavia Spencer and Reese Witherspoon , uh , talking about Truth Be Told, but in that , that interview, we got to answer similar questions that you’re asking and in front of Emmy voters, so helping the world of entertainment to think differently. And I remember , uh, Dan Shots , uh, talking about it a little bit and saying like , uh, the entertainment world, hasn’t been open to our populations and persons with disabilities persons who are blind or low vision and, and, and myself saying like, we’re , we’re coming and we’re here. And , and, and talking about that experience and what it was to work on the show and see these talented people get this opportunity. And not because they’re blind because they were the best people for the parts. And so that’s one experience. And , uh , another one I would throw out there, I was getting to see the success of, of the actors who are blind or low vision and what they brought to the parts, whether it was Marilee Talkington who plays Souter Bax, or Bree Klauser who was playing the Matal , there was Alex , and Donovan and , Jefferson and all these other individuals, actors, Jessica , uh, and so many people that brought their talents to the show and , and they were hired for their talent, their skill. So that was a big thing. And I I’d say the most trippy experience was a experience where I was going to launch for Apple TV + I, in Cupertino , uh , they keynote for Apple where they launched their new products. And we were there representing the shows like the executive producers, myself, and , uh, to the lead actor, principal actors, Jason Momoa, Alfre, Woodard, and all these other actors and producers from other shows. So an event filled with Reese Witherspoon, Jennifer Anderson, Octavia, Spencer , uh, uh, Oprah Winfrey and all these people,
Jonathan Wahl: 44:05
And Joe Stretchay.
Joe Strechay: 44:06
Yeah. And Joe Stretchay mixed in there. So when I went in , I was with Sarah Herrlinger who’s the head of accessibility for Apple , uh, her and I were walking in together and she’s like, what do you want to do? I’m like, I want to meet people. Cause I’m never going to get this opportunity again. So she’s like, can we go see Jason Momoa? And I talked to him for a second. She’s met him before. So we go over to Jason and his wife, Lisa were telling them, and he’s like, Jason’s like, what do you want to do? I’m like, I want to meet people. And he’s like, who do you want to meet? I’m like everyone. And he’s like, well, Oprah is reaching out for your hand right now. And I’m like, what? And I would say that was the most,the biggest , mindblowing situation that I’ve ever been in.
Jonathan Wahl: 44:53
Thanks, Joe. We really appreciate the work you do to have blindness properly represented. So we continue to cheer you on.
: 45:01
That’s it for today’s episode of C hange M akers. Be sure to look for ways you can be a Change Maker this week.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:14
Welcome back to Change Makers. My name is Jonathan Wahl. Today, we’re going to hear from an incredible Change Maker. Take a listen:
Gabby Caldwell: 0:22
It was aweful. No one cancels Helen Keller.
Jonathan Wahl: 0:26
It was awful. No one cancels Helen Keller, that was 19-year-old, Gabby Caldwell. She lives in Texas, she’s deaf blind, and that was her response when she discovered the Texas State Board of Education was going to remove Helen Keller from their third grade social studies curriculum standards. Instead of letting it happen. She and her mom, Robbie testified before the board. Here’s what her mom had to say:
Robbie Caldwell: 0:50
That’s like removing George Washington, to me. It’s like, “what??”
Jonathan Wahl: 0:54
Today’s topic on Change Makers is Helen Keller. She’s a name known ’round the world as a symbol of courage in the face of incredible odds. Helen was a social justice warrior writing a scathing letter to Nazi students before World War II, visiting Japan as American’s first Goodwill ambassador. After the atomic bombs were dropped in shaping disability policies that are still bettering lives today. Today, we’ll hear from the archivist at the American foundation for the blind – AFB. She’s one of the leading experts on Helen Keller. We’re going to take you beyond the water pump and talk about the Helen you might not know. We’ll also talk to the director of the museum at the American printing house for the blind. APH is now home to the physical Helen Keller archives. And we’ll talk about the impact her life will have on visitors. But first I want to get back to Gabby and Robbie .
: 1:44
This mother daughter duo knew they could have let Helen be removed from history, books or curriculum instead of watching it play out, they jumped in and testified before the Texas State Board of Education, because Gabby is deaf blind and we did this over zoom. She can be a little hard to understand, but her message is so important. When I asked Gabby what she likes about Helen Keller, she said it’s that Helen, you sign language like she does. And she was a fighter and very tough. She said, people need to learn about Helen Keller because she used her mind skills, use sign language, and finger spelling, and…
Gabby Caldwell: 2:19
She is a deaf blind superhero.
Jonathan Wahl: 2:23
Gabby, what did it feel like getting to testify before the board of education?
Gabby Caldwell: 2:30
It felt great!
Jonathan Wahl: 2:30
What did you say to the board?
Gabby Caldwell: 2:34
Helen Keller is my hero and I’m a huge fan of Helen Keller. She knew about sign language, and finger spelling, and used voice and traveling the world, around.
Jonathan Wahl: 2:49
Gabby . Thank you so much. It’s so great talking to you and I don’t think you even know how many people you’ve inspired just by standing up for Helen Keller. So kudos to you. And thank you. Thank you so much for talking with me.
Gabby Caldwell: 3:03
Thank you.
Jonathan Wahl: 3:05
You’re welcome. Robbie , moving over to you. Just tell, tell me more about Gabby who she is and, and what made it so important that you wanted, wanted to stand up and make sure Helen Keller can be her role model?
Robbie Caldwell: 3:21
Well, Gabby has been deaf blind since birth. She was born at 23 weeks, weighing a little over 12 ounces. And so I always start there because nothing about her, our walk for the last 19 years has been predictable. You know, there’s nothing that I’m not her language acquisition. She learned , uh , words in a book prior to learning the words to voice them, you know? So , um, she’s just never been typical. It’s been anything but that. And so, but we’ve always been blessed that she has been kind of a walking on what I’ve always described as a walking on sunshine kind of girl. So she brings a lot of enthusiasm to everything she does. And so that has been really important because I would say given how complicated it was to educate Gabby, it allowed for like the administrators, the teachers therapists, they always leaned into her because she had that kind of exuberant personality.
: 4:27
You know, she just brought that energy. And so that was really good. And , um, and so this year Gabby just graduated high school and , um, anyone who knows Gabby knows that she is completely obsessed with clowns, the circus and travel. Uh, she can tell you if you can just spin a globe and point to it, she can pretty much tell you where you are. And she, I mean, she’s just obsessed with that. And so we’ve been really blessed. We’ve been very, very blessed considering. And so we just kind of have been taking it as it comes. It’s been a very unique experience
Jonathan Wahl: 5:08
Back to when you first heard Helen Keller would be removed from the third grade social studies curriculum in Texas. What , what went through your head as a mother?
Robbie Caldwell: 5:18
You know , I was shocked . I mean, you know , like I just, I really expected it for it to be retracted. I kept thinking that at some point it was kind of a process that we first heard it and you know, you’re thinking like, that’s like, we’re moving George Washington to me, you know, like , it’s like how big , like you just can’t believe that that would be happening. And so then it wasn’t retracted, you know, there was, they were going to go forward with it . And I was, when I’m telling you, I was shocked, I was just shocked. Cause I’m thinking someone that world renowned, like how I just couldn’t even, it just didn’t make it made absolutely no sense to me.
Jonathan Wahl: 6:00
Why is learning about Helen Keller important for all students?
Robbie Caldwell: 6:05
Well, for me in particular, you know, like I learned about Helen Keller in school. And so , um, I learned about Anne Sullivan in school. I learned about interveners in school. I learned that if given the right education, people can make progress. Even those who seem like they were not going to make progress. And so for me, that’s the blueprint for all disability education that when I thought, you know , like you you’re , you have it there in a, in a person’s story. And then when you look at the trajectory of Helen Keller’s life after receiving that type of education and those types of services, well, I mean, that’s huge and it’s huge, not just to me, for people who are with disabilities, it’s huge for everyone. We all have struggles, even if they’re not named as disabilities. And it lets you know, that we can overcome. And that to me, what Helen Keller was always about.
: 7:07
And so I just think it would, when you think about her intellect and you know, her, how hard she worked, you know, I mean , I know how hard my daughter has worked for acquisition of information. I can only imagine at that time, without all of the things that we have at our disposal. So when you look at how much, how hard she had to work, I mean, it’s just such a tremendous example of everything you want to do and you want to see in this world. So I think it’s, it’s important for everyone to have that kind of robot
Jonathan Wahl: 7:42
Going to testify before the board of education is a big step. What made you willing to go there and represent Helen Keller ?
Robbie Caldwell: 7:52
You know, it’s funny. I pre-interviewed Gabby for this, right. Um , prior to this, cause I had to have her understand the questions and make sure she was in context and things of that nature. But it was interesting with her in that one of the things that she said, we did that this morning and she was, but I asked her the same question. She was like, Oh, I felt great. And I forget that Gabby is such a unique bird in that we’ve been advocating for her since she was born. And like literally since she was born. Um, and so for her, it’s very natural. She wasn’t intimidated by the process. She was just like, okay, we’re going to go and do this. You know, like she’s been, she’s been brought into this and we’ve been advocating all along. And um, you know, it’s , it’s just really, I , I think that that process even albeit that it was very long and tedious at that particular day , uh, we were last , we had gotten there at eight o’clock in the morning.
: 8:56
You come in and you have to sign up prior, let me give you the particulars. You have to sign up prior, online that you’re going to come and present. You tell them what you’re going to present and they give you the timeframes and they give you the day. And so you have to wait, but you know, I had prepared Gabby and she was prepared to go and speak. And she’s , for some reason, she does so much better when she has to voice in those, in those kinds of situations. And she does in her natural. I mean, she, she comes alive in front of a microphone. I have no clue of why, but she is really is where she’s very much at home. And so for her, I had more anxiety about it than she did by far. And I never thought that it would have been picked up the way it ended up getting picked up. And so we just thought we’re going to advocate we’re we’re , you know , um, and my husband explained to me why it was even more important. I didn’t quite understand why it went beyond Texas at the time. I thought, Oh, it matters for Texas. And he was like, well, Texas is one of the largest purchases of textbooks. And so as Texas goes, so probably half of the country goes and I was like, Oh, I didn’t realize the gravity of that. But for me, it was just very simple that we should be doing this. It was just, it was, yeah.
Jonathan Wahl: 10:27
I love how you said Gabby’s good in front of a mic because I know another woman who is good in front of a mic who was deaf blind, and that was Helen Keller’s so very, very fitting. How did it feel when you found out Helen Keller would stay in the educational standards?
Robbie Caldwell: 10:44
Oh my God. We were overjoyed. I mean, it made sense because Gabby was there. I think that if I had just shown up to do the same advocating, it wouldn’t have made as much sense. And it’s similar to that. If you remove Helen Keller from the process, all of our children make no sense to the world, to the doctors who will never have another , uh, who will only see one deaf blind patient or, you know, it just to the instructors, to the teachers, all of those things are deaf, blind children don’t make any sense. It doesn’t, you know, they can get educated, but if you don’t see it and you don’t have a representation, it really is hard to pin things to , does that make sense?
Jonathan Wahl: 11:34
It does. Yeah. What lessons do you want Gabby to learn from the life of Helen Keller?
Robbie Caldwell: 11:41
Oh, wow. Um, wow. That all things are possible. Biggest thing is that all things are possible with hard work and education that you are on your running your own race is what I call it, you know? Um, but Helen Keller was, I don’t know if there was, if there was a slogan, it would be, I can just simply I can help me. I can, I can do it. If you help me, show me , um , help me acquire that information. I just, I just think about, for me, it’s been really important for us. Gabby has what I always call scattered skills. He has things that are very high things that are completely missing in concepts, but for us, we have really tried to find educators and we’ve been blessed at the blind school in Austin is to find people who are, who are looking for a work around looking to, to, to really find what works, not what they want to do, which is a very different way of going about it. So for me, I just really want Gabby to take away from her is all of the pot , which Gabby has, which I’m very thankful for. Um, is that a very positive outlook and an I can do spirit.
Jonathan Wahl: 13:11
Thankfully we’ve started to see a transition in for instance, children’s books, the importance of representation of opening a book and seeing yourself whether that’s the color of your skin or whatever it might be. Let’s talk about representation. Why does it matter for Gabby to be able to open up a book and see someone like her in her history book?
Robbie Caldwell: 13:34
Because there’s no one else I can’t stress that enough. I just, that’s why beyond. I can always think beyond my understanding of deaf blindness and Gabby. I think about all disabilities. There are so little representation of any one with disabilities and the fact that she achieved and what when they started. I mean, there’s so many examples of why representation matters, but you have to know it’s possible. You have to plant the seed. You have to plant the seed in every doctor and every therapist in every one who’s going to come in contact. Every, everyone, every teacher who’s going to come, every administrator, who’s going to make laws, everybody. You have to have the, Helen Keller is the seed that if we do the right things, that that is possible, and it doesn’t matter if you hit Helen Keller status, you know, you know, going to Radcliffe and things like t hat, it just means that you are not relegated to this place.
: 14:43
Representation is huge. You have to have the seed planted that the gatekeepers are the not, you know, it’s just so huge that representation seeing yourself, knowing that there is someone also in someone else, especially in a low incidence disability, but there are other people out there like you , it’s huge. You have to see yourself and you have to see yourself succeeding. And so she’s a great example of that. Our textbooks don’t hold enough. Individuals do not place enough individuals similar to Helen Keller in our textbooks. I think that we need more of those types of stories , those kinds of characteristics, that we can all carry forward. I mean, she was ahead of her time in every way.
Jonathan Wahl: 15:36
I learn that more every day, as I learn more about her. Thank you, both Robbie and Gabby for being advocates, you know, at APH we often say the future belongs to everyone and we’re trying to change the dialogue around people with disabilities. And you all are really the people out there doing the work, you know, going, going to court to defend Helen Keller . So we appreciate you. Thank you so much for your time and being on the show today .
Robbie Caldwell: 15:59
Well again, thank you for having us. Do you want to say thank you for having us?
Gabby Caldwell: 16:02
Thank you for having us.
Jonathan Wahl: 16:07
The student or child, and you want them to learn more about Helen Keller? The museum at the American printing house for the blind has put together a series of lessons that teach you all about Helen Keller using her writings, as well as other resources. If you go to the show notes, I’ll share a link there. Next we’re talking to Mike Hudson. Mike is the Director of the Museum at the American Printing House for the Blind. Last year, we partnered with AFB to bring the world’s largest collection of Helen Keller artifacts and the AFB archives to Louisville, to APH. Mike has been working on exhibits to showcase these important artifacts in the already robust museum, that houses much of the history of the field of blindness. Mike, thanks so much for being on Change Makers today.
Mike Hudson: 16:51
I’m glad to be here,
Jonathan Wahl: 16:53
Mike, you’re a historian at heart. What did you think when you first discovered the physical archive
Mike Hudson: 16:59
Of all of Helen Keller’s artifacts might be coming to Louisville to be under your care? Yeah, it was a big moment. We , uh, had done a collections plan for the museum a few years ago. And , uh, one of the things that we immediately identified is that we had nothing in the collection that had anything to do with Helen Keller and that there was really not any real purpose for us to spend a lot of time trying to collect it because the American foundation for the blind had that story. It was their story. Um, and so, you know, when , uh, Craig Meador, our president came and said, you know, we’re looking at acquiring this collection. You know, of course I got real excited. And , uh, I just started thinking about the possibilities.
Jonathan Wahl: 17:50
Why do these artifacts matter to visitors coming to the APH museum?
Mike Hudson: 17:56
I think they matter kind of in two ways , uh, for sighted people, they have low expectations of people with disabilities in general. It’s just the way that the world works. And so a story like Helen Keller story, and of course Anne Sullivan , who you cannot separate the two from each other, that story of a hope and a perseverance , uh, through , uh, obstacles is an , is a hugely important story for all, all of us. We all need to know that despite the slings and arrows, that life throws at us, if we approach them with energy and , uh, a little bit of help and perseverance that , uh , we can do great things. And Helen did great things with her life. Um, but for people who have disabilities themselves, people who are blind or visually impaired for people who are deaf or hard of hearing Helen story is also an inspirational story to those folks that , um, you know, this is a person like them.
: 19:10
This is a person who has lived through the same things that they’ve faced with every day. And , uh , you know, she didn’t hit a home run every day, but , um, she, she, she got up and she tried every day and that can be an inspiration , uh , for people who are facing these obstacles. Um, you know, it’s, it’s, it’s , it’s neat, I think in a museum to see stories about people like ourselves. And so , uh, you know, people with disabilities are not always highlighted in museums and histories. A lot of times they’re forgotten. They’re the they’re , their stories are all going on, but no one, no one writes about them. So Helen is that, that kind of rare , uh, character , uh, with disabilities who becomes world famous. And I think, I think those stories are important for museums to preserve. And I think no matter who you are, you find some meaning in Helen and Annie stories for your own life.
Jonathan Wahl: 20:06
Mike, you boxed up each item in New York, organized them meticulously. What feeling did you get as you opened the boxes and pulled out each of these pieces of history?
Mike Hudson: 20:16
That was such an amazing experience and continues to be an amazing experience every day? Um, yeah, the other day I opened up her a box full of her , uh, graduation, academic gowns. She got , uh , five or six different honorary doctorates. And so in this one box and I was looking at the other day, it was her, it was her graduation robe from the university of Delhi in Delhi, India , uh, from 1955, something like that. And then the other one was the first honorary doctorate she got, which was from Temple University. And I was just electric cause , uh, you know, whether it’s touching a braille document, a braille letter that Helen typed herself on a braille writer and then touching the braille writer itself , um, it’s, it’s this just authentic experience. And I think it’s why people love coming to museums. I mean, they’d love the stories, right.
: 21:18
But they also love being in the presence of things that were there when history was being made. You know, when you’re, when you’re standing in independence hall next to the Liberty bell, and you , you know, the story of, of the, you know, the bell being rung after, you know, the declaration of independence was written, that’s a feeling right. And that’s the feeling I’ve been getting for the last five months is that as I unbox, these things, you know, whether it’s a metal that was presented to her when she went to Latin America or a cricket cage, which is one of my favorite artifacts that she got, u h, as a gift when she went to Japan and she went to Japan three different times and was treated just like a princess when she went there, like royalty. And so all of those things are all carefully packed up and, u h, u h, that’s exciting, but the most exciting thing is thinking about how are we going to put all these things on exhibit so that everybody else out there can come enjoy them? That’s really the challenge that the that’s the collaboration between us and the American foundation for the blind , uh, you know, for years they’ve had these things and they taken wonderful care of them, but how do we put them on exhibit? How do we share them with everybody and how do we , uh, how do we provide access to everybody so that they can, they can learn more of the story of Helen and Annie , uh, and , and just enjoy being, being there with the real things, authentic things.
Jonathan Wahl: 22:53
Mike, what are the plans down the road for this exhibit and how will people be able to interact with these archives?
Mike Hudson: 23:01
So our big plan is obviously to build new exhibit galleries , um, that will focus on the story of Anne Sullivan, the teacher and Helen Keller, the student, and then Helen, who becomes, you know , this internationally famous , uh, advocate for people who are blind or visually impaired. So those , those exhibits are going to happen , uh, in the long-term . Uh, and over the next three to five years in the short term , uh , we’re, we’re going to constantly have a rotating schedule of different artifacts , uh, from the collection. You know, initially we kind of put out the highlight artifacts, things like the Oscar that she won in 1955 or her presidential medal of freedom, or this Zulu shield that a bunch of Zulu dancers gave her when she visited South Africa. Uh , but long-term , I have all kinds of great ideas, like a little exhibits about her trip to Japan, little exhibits about her trip to Latin America. Uh , there’s a , there’s probably 20 different portraits of Helen Keller. So I think that would make a great exhibit, just different art of how she was , uh , how she was seen by artists, both painters and sculptors. Um, there’s a million little ideas, you know , uh, some of the things that she writes in private to , uh, her friends and to her family and to , uh , other social activists, I think those are make a great exhibit two . So yeah, we’re going to do a series though . Always be something from the collection , uh , on display until we get to the more ambitious idea down the road,
Jonathan Wahl: 24:41
In your words, why does Helen matter as much today really has ever before?
: 24:48
Well, I think we all still need heroes and Jonathan , I hope that’s not an old fashioned idea. Um, I think we need people to look up to , um, people do aspire people to make us want to be better than we really are. And Helen, you know, it’s so amazing. Jonathan, as we, as historians deal with historical figures, you know, we , we often find that people have feet of clay, right? That the people are just people, men and women of the past are maybe no better or worse than we are. Um , and even if they’re famous for having done something incredible, it’s somewhere back in their background. There’s also examples of places where maybe they didn’t live up to the high standard that we want them to. But Helen does, Helen is an amazing woman. She’s a real person. I know that a lot of times we try to make her into a Saint. She was not. Uh , but, but she, she always has this fresh, positive outlook on what is possible. And even when she is chatting her political enemies or trying to drag somebody into the 20th century , uh, she does it in such a way that , uh, makes people want to follow her. Uh, you know, the FBI had a file on, on Helen. Did you know that they were investigating her , uh, during the period of, you know, McCarthyism and , uh, all of the cold war fear about communism, but no one ever made a move against Helen Keller. She was just too big to , to touch that way. And , uh , I think we need people like that in our lives. And I think we’re excited here at APH to be able to tell that story
Jonathan Wahl: 26:48
Well, thanks so much, Mike, it’s always a pleasure. And I think we’re all eagerly awaiting to get, get to just sit back and be a part of that story, unraveling at APH. So we’re excited about what the future holds for this exhibit and appreciate all your dedication.
Mike Hudson: 27:03
You bet. Let’s do it.
Helen Selsdon: 27:06
Our final guest on the show today is Helen Selsdon. She’s AFB’s Archivist. And one of the leading experts on Helen Keller, she’s been studying Helen for more than 18 years. She was also part of the team that digitize the Helen Keller archives, which can now be seen online through AFB. I’ll have a link to that in the show notes. Helen was kind enough to talk with me on a hot day without air conditioning. So you may hear a fan from time to time, but I know you’ll be fascinated like me, as we learn more about what Helen Keller stood for Helen. Thanks for being on the show. My pleasure. I’m delighted to be here.
Jonathan Wahl: 27:42
You have been researching Helen for 18 years, like kept you digging. What kept you digging and learning more about her?
Helen Selsdon: 27:52
Well, I was brought into AFB as an archival consultant. Originally, Helen Keller’s archive was in disarray and I was traditionally a consultant for multiple archival collections. So they brought me in and we ended up organizing so much material. I ended up organizing so much material and I just stayed the work continued. There was just so much to do. Um , I knew nothing about Helen when I began , um, except that we have the same first name and that was about it. Um, but the more I dug, the more fascinated I became, I was not aware that her life was as broad and as rich as it is. And as it was, you know, she lived from 1880 to 1968. She was involved in many movements apart from the blind , this movement. And , um, there’s just a wealth of material in the archive. And I was just fascinated by the whole thing. So basically it was a huge challenge. And I love the fact that it was such a challenge.
Jonathan Wahl: 28:54
Many people only know Helen Keller at the surface level. Paint a picture for me of the spunky, vibrant Helen, that most people just don’t know.
Helen Selsdon: 29:05
Right. You got to go back to her childhood. Really Helen , um, was six years of age when Anne Sullivan may see a teacher came down from the Perkins school for the blind , um, Helen’s parents, Kate and Arthur Keller were looking for help with their daughter. And they found this kid to be very unruly. And he took this very bright spunky, little six year old and helped her to learn to communicate. She taught her tactile finger spelling, and she taught her how to read braille. And that was it. You see from the very get go that Helen had this incredible energy and lost life. And he writes in one of her letters that Helen was like a sponge as a child. And I think she remained like that from the rest of her life. She kept going fascinated by everything. She would read as much as she could get hold of, and as much as we’ve browsed for half , um, she , um, I say the adult, she loved music and theater and not to say also martinis as well. She was a fun loving lady. Um, she performed on vaudeville. Many people don’t know that, that she did that to earn a living. She was very good at it. Um , she had tons of charisma. I did meet a few people who knew her, met her when she was very, you know, all back in the day. And they said she had this aura about, she had this sort of energy for you. Couldn’t fail, but notice
Jonathan Wahl: 30:37
Helen didn’t steer away from speaking the truth. You know, she was so bold. I don’t, I don’t think people realize just how bold she was. What are some of the things people would be surprised to know about Helen?
Helen Selsdon: 30:50
Wow, there are quite a few things here. Um, I think importantly in the 19 teens a nd the teens, she spoke out against social injustice. She was fervent supporter of, u m, equal pay for equal work for women. I t w as a major supporter of poor indigent people and working women. One of the things that Helen campaigned against was a taboo subject, a sexually transmitted disease where pregnant women would, um , transfer the disease to the babies. When the babies were being born be fore t he babies were born blind, there was a simple remedy to this silver nitrate drops in the baby’s eyes and the newborn baby’s eyes, the stigma around venereal disease and women being frightened to speak up and embarrassed to speak up resulted in the m any babies were not treated who could have been so Helen wrote in newspapers, in magazines. So she petitioned doctors, there’s archival material showing she wrote to legislature, legislators demanding that please get over this taboo subject. Let’s make it clear that this is a very easy, u m , medical problem that can be fixed. I mean, that was very unusual, but documents in the archive s pan from 1907 to 1953 on this subject, she probably saved the eyesight of many babies as a result because her thoughts and opinions were published in the newspapers because the doctors, interestingly, could not so easily write about this disease and publish t his, this information in the newspapers. Whereas Helen, in her extraordinary sort of capacity as this famous deaf blind woman had the platform with which to do that. So that’s one of the things many people don’t know about. Um , she was an early member of the ACLU, the American Civil Liberties Union, as well as the NAACP,
: 33:07
The Helen Keller archive contains speeches she gave and articles she wrote in her fight for women’s ability to vote and gain equal economic and democratic power to men. Um, the Centennial of the night of the ratification of the 19th amendment granting women, the right to vote just took place on August 18. Um, Helen was instrumental and very much was a suffragist and took part.. She gave speeches, demanding the right of women to speak , uh , wanting to gain the vote. This is all contained in the Helen Keller archive. So it’s really her activism that people are less aware of. And her progressive agenda.
Jonathan Wahl: 33:54
Let’s talk about context. Some of the things Helen stood for may not be widely accepted today, but Helen lived in a, in a much different world. How do we make sense of some of the things
Helen Selsdon: 34:06
Right in 1909, Helen joined the socialist party. Um, she had very left wing politics. She joined the socialist party in her fight for economic equality for men and women. This was very much part of her belief in the right of women , um, getting equal pay for equal work as a man. Um, she spoke out a lot against a class , um , inequality. There are many speeches in the, in the digital archive and the archive about this. She throughout her life, her big thing was one has the right to be in control of one’s own life. One’s own destiny, your disability, your gender. This should not disbar you in any way, shape or form from living a full and happy life. And I think this motivated her in so many, this is where it was a thread throughout her work, even into the blindness field. You know, obviously you one has to be able to earn a living as someone who’s blind and visually impaired. She fought against prejudice towards blind and deaf people that prohibited them that made it far harder for them to enter the workplace. And actually this sort of goes on today. We fight the same battles today. So her fights were very much, very much the same as they are today. In many instances, Helen is sometimes criticized for her , um, support of Margaret Sanger and birth control. Um, she greatly admired Margaret Sanger and , um, Sanger obviously was the founder of Planned Parenthood. Um, I think she admired her as well because Sanger was willing to confront difficult issues that faced women. And she was willing to confront them head on Helen was a leader. And in many ways, sort of ahead of her time , she was willing to have these hard conversations and to think deeply about uncomfortable, potentially uncomfortable topics. She listened to , um, a wide range of opinions and to diverse voices,
Jonathan Wahl: 36:38
In your words, Helen, why does Helen Keller matter as much today as ever before?
Helen Selsdon: 36:44
Well, we live in incredibly troubled times and I think she has lived, she lived through very troubled times and she showed that there is a path through this, that there is a way forward, resilience, determination. She wasn’t just this incredible sort of figurehead . You know, she wasn’t just some iconic symbol. She was a woman of real flesh and blood who worked extraordinarily hard to improve the world. And it takes, as we know, it takes a stunning amount of effort to improve things and to change things for the better she lived through the first world war, the second world war, the Korean war in the second world war, she visited 19 better hospitals. Um, we live during the time of a pandemic. She lived through the 1918 epidemic. She saw many , um , people throughout her lifetime become blind and deaf through disease and she saw , um, the, what happens , um, young men going to war, losing their vision, the need for rehabilitation services.
: 38:04
She can show us that we have to work super hard, that there is a chance to improve the world we live in. It’s not necessarily all gloom and doom and that individuals can make a difference. Seriously, individuals can make a difference and above all collectively we can move things to a better place. I want to just sort of read this quote that I think is so Helen ” I long to a great and noble task, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker.” That is Helen through and through. that’s AFB. That’s APH. We, we, we, it doesn’t stop. It doesn’t end. We keep pushing forward. Yeah . It’s not easy. It’s a , it’s a left foot right. Foot thing. It’s not glamorous or sexy, but we keep doing it just as Helen did.
Jonathan Wahl: 39:15
Helen , thank you so much for being on the podcast. It’s always a pleasure of learning more about Helen Keller from you. And I’m excited as APH and AFB continue to work on the Helen Keller archives and ensuring that people for generations get to learn about Helen Keller.
Helen Selsdon: 39:30
Wonderful. Thank you for having me. Thank you. Absolutely.
Jonathan Wahl: 39:36
I hope you’ve enjoyed your time. Learning more about Helen Keller. There’s still much more to learn. So I do hope you’ll check out our show notes for links to continue your learning.
: 39:44
That’s it for today’s episode of Change Makers, be sure to look for ways you can be a Change Maker this week.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:15
Welcome back to Change Makers. My name is Jonathan Wahl. We have an exciting topic today. Lego Braille Bricks are here! APH is an official partner with LEGO and is responsible for distribution of the bricks in the U. S. If you missed our original announcements, these are bright colored bricks molded with studs that correspond with numbers and letters in the braille alphabet. They allow students who are blind, and sighted, to play and learn together. They were developed by the LEGO Foundation and will be distributed to children internationally. Today. We’ll hear from Paige Maynard at TVI with Visually Impaired Preschool Services in Louisville, Kentucky. She’s been working with the bricks and the curriculum on how it can be used in the classroom. But first we have a special treat: we’ll be hearing from Per Havgaard, and Stine Storm from the LEGO Foundation. Per is on the LEGO Foundation’s Facilitation and Experience Team. He and his colleagues focus on how to best facilitate LEGO’s philosophy of learning through play. And Stine is the Project Manager for LEGO Braille Bricks with the LEGO Foundation. Thank you both so much for being on our podcast today.
Per Havgaard: 1:21
It’s our pleasure.
Jonathan Wahl: 1:22
The first thing I want to talk about Per is, LEGO Bricks are a staple i n homes across the globe, but they’re not just about playing. Can you tell me about the LEGO Foundation’s philosophy of learning through play?
Per Havgaard: 1:35
Definitely we’d love to. So the LEGO Foundation, we have a vision that we would like to help children be able to have the opportunity to get into a future where they can become creative, engaged, lifelong learners. And we have dedicated ourselves to try to redefine play and to reimagine learning so that we help and support children in building a broad set of skills that they need to engage into this future that lies ahead of us at some, that is so hard to predict what holds.
Jonathan Wahl: 2:12
A lot of education focuses on learning something specific. So how does learning through play push young people to think, not like adults so specific, but think outside the box?
Per Havgaard: 2:25
Yeah . So the beautiful thing is that in many ways we don’t need to teach children this . We might need to consider what not to teach them or what not to educate them out of. We truly see children as our role models in the LEGO Foundation, because learning through play is how children naturally go about things. You don’t need, I said before, you don’t need to teach a toddler or a three year old or four year o ld to play. That’s what they do. And I think for us talking about redefining this play, we see a need of that because play is, as we see, i t’s still widely misunderstood. It is still seen as something childish. I t’s something you do when you’re done working, then you actually go out and play. So you do all the hard stuff first, and then you actually go play, but we want to, we want to redefine that? And we need to understand that when we are playful in our state of mind, when we have that, what if attitude to things that is often when we are able to be innovative, that’s when w e’re able to be creative and actively exercise and massage, all those skills that we see, we need to walk into a future that lies ahead of us. So, u m, so yeah, that’s t hat, that’s why t hat we see it like that.
Jonathan Wahl: 3:46
My now two-year-old got LEGO bricks for her birthday. And it was so fun now that I’m working on this project because I was watching her, put them all together and problem solving. And I was like, that’s it right there. That’s learning through play. It was just, it was very cool to kind of put that concept together. Moving on. Let’s talk about being a lifelong learner. How can learning through play ensure young people grow up consistently curious and ready to learn?
Per Havgaard: 4:13
So I would say when we talk about re-imagining learning, it is, I would say there was , of course there has been a shift and there will be a shift and there must be a bigger shift towards the way that we look at learning and teaching. If you, if you go back some , some decades or maybe even a century, the type of work that we were educating ourselves towards required a certain title of education. And I would also say that it was work was tough if you are on a factory line and somewhat some of the teaching and learning work also like tough road learning. And you should like sit out your time and then you’d be able to go out. And many people, I would say from my parents’ generation , they have not so good experiences with school, maybe even some in my generation as well. And they would like, they were just waiting to get out of there because this is not nice. With our, I would say more child centered approach towards learning and teaching. We definitely see and believe in that we will create people who wants to learn more. We don’t want to create people who say that was it at school. We need, we need to have people who continue to be curious, who continues to be innovative and creative thinkers in whatever they do and see life as a journey. That starts of course, with how we are met in the system, how we met in the school by the teachers. If we are someone who are just sitting there studying to take a test, but it does not make meaning to , it’s not meaningful to us. It’s not, you’re not being actively engaged in what you’re doing. You’re just being, doing what , doing what you’ve been told. Then I actually truly understand why a lot of people, they do not want necessarily to learn more because that’s not so nice. So, so we need to have a more student centered and more child centered approach towards our learning, toward our pedagogies, and with that, we definitely believe that we will create these people who constantly are curious, who can help us solve all the challenges that we are facing going ahead.
Jonathan Wahl: 6:15
As adults, I think we often separate play and learning. So how do we redefine play and understand its importance in learning?
Per Havgaard: 6:25
I think maybe I think I got this question many, many times, and I think we, when we think about play, we see that childhood picture of ourselves running out there playing. When we talk about it, we often make the distinction between to be playful and the activity play. And you could say that if a play is well-designed, it will allow you to become playful. So you could, we could watch a recess time, kids playing in a, in a, in a playground. And we would see them come up with a play. They’re playing something. At some point, the play breaks down. It’s not fun anymore. Then they renegotiate or they try to see if we could change it, maybe. And then they go back into that game again into the play again, and they become playful one more time. Maybe, maybe it just breaks up and say, Hey, it’s not fun anymore. I don’t want to play more with you. And then they’ll maybe try again tomorrow. Maybe they’ll never do it again. But there is a distinction between the activity play and the state of mind to be playful. Children do this naturally. They’re so good at it. The challenge comes when we adults interfere many times. And especially when we do it in a school setting, because it’s actually quite hard to be playful in your state of mind in something where you’re basically just copying someone else’s work and trying to remember it to what’s a test on Friday. That’s not very playful. That is something else that requires a lot of other things, your ability to do that. So, so that is, that is very much, I will say what we’re looking for. And we are looking for pedagogies and approaches towards teaching that allows for student agency. So, so if you are doing like a project project based learning, or if you’re doing other pedagogies in that field, you have a say in what you’re doing, you make decisions. You are the player, which is necessarily if you should become playful, if you’re just someone who’s tagging along, being quite passive, and you’re not really harvesting all the fantastic things that we see happening when you reached that state, that state of mind. So if we can do what we supposed to be doing in school, we should be expert on content literature and all those things, but doing it in ways where you call more shots as a student where you are more involved in what is happening, you’re actually being asked about what you like and prefer. Then we could actually get like the best of both worlds.
Jonathan Wahl: 8:49
Thank you so much. You know , LEGO is so successful and popular worldwide. So it for me, and I know for our audience, it’s really exciting to learn about the philosophy behind it that we might not all all know about. So thank you for your time. Stine, moving over to you specifically about LEGO Braille Bricks, they add another layer of learning. Why is this important for the LEGO Foundation?
Stine Storm: 9:15
Okay. Um, so my colleague Per told you a lot about the philosophy behind learning through play. For me, LEGO Braille Bricks is such a tangible example of learning through play. Um, in this instance, and we have many other examples, but in this instance, it’s , um, catering to the needs of children , uh, who are blind , um, in the Foundation. We also work within the area of other special needs, such as autism and ADHD. And we’re working on ways to create similar kinds of concepts to, to ensure that these children also have access to learning through play and are able to develop the skills that Per mentioned. So for us, yes, this is very important and very essential in our work to give equal access to learning through play.
Jonathan Wahl: 10:11
And what kind of impact does the LEGO Foundation hope the LEGO Braille Bricks will create for students?
Stine Storm: 10:19
Um , well, of course we hope as Per was explaining that children become more motivated and engaged in their learning process, that they truly do become lifelong learners that their learning, how can I say, span, doesn’t stop , um, too early, especially for kids with, with , uh , special needs. So , um, if we can help children who are visually impaired to learn braille in a more fun and engaging way, I think we’ve come a long way into trying to change their life trajectory to something that’s positive and, you know , inspiring for them. Um, again, giving them equal opportunities in life.
Jonathan Wahl: 11:05
Well, thanks to both of you. I really appreciate your time. And we are so excited to see students and educators start to get the LEGO Braille Breaks across the U.S., and just to update people on the progress of, of, of how they’re impacting students. So thank you for partnering with us on this project and for all the work you all are doing at LEGO.
Stine Storm: 11:25
Thank you .
Per Havgaard: 11:30
Our pleasure.
Jonathan Wahl: 11:30
Next we’re talking with Paige Maynard, she’s a TVI and Developmental Interventionist at VIPs or Visually Impaired Preschool Services. She works with parents and children in their homes, ages, birth to three. Paige, thanks so much for being on the podcast.
Paige Maynard: 11:44
Thanks so much for having me. It’s really good to be here.
Jonathan Wahl: 11:47
Paige for people who don’t know you, can you just tell me a bit about your background as an educator? I am a teacher of
Paige Maynard: 11:54
The visually impaired and developmental interventionists at visually impaired preschool services. We are based out of Louisville, Kentucky, and we serve children and their families ages birth to five throughout the States of Kentucky and Indiana. And my role at VIPs is to work with families and infants and toddlers in their homes , um , working within the context of routines and play , um, just helping those families to be empowered, to help their kids reach their highest potential. So I really loved my work. Um, it’s, it’s exciting to go to work every day. Uh , right now I am working , um , in my little workspace in my house, which has also been fun and exciting learning all of those new things. Um , but it’s still good to meet with families and see the little babies across the screen. Um, and just to be allowed, I think into family’s lives, I think is, is one of those wonderful things. And they bring so much joy, I think to me in my day. And I, I hope that I, I have that same impact on them. Um, I’ve been at the , um , coming on nine years and I just wouldn’t be anywhere else.
Jonathan Wahl: 13:12
That’s great. It’s fun to hear about your passion for what you do . And I know VIPs really does a lot of incredible things. It’s been fun to watch your work. More specifically, you’ve been working with APH and the LEGO Foundation on LEGO Braille Bricks. What is your role been in this project?
Paige Maynard: 13:32
So my role in this project , um, has been really fun and really interesting when the project started out. It of course, was before the pandemic started. And , um, let’s see. Um, Kate at APH had reached out to this and asked about me joining on the LEGO Braille Bricks team , um, for a presentation at AER. And I was so excited about that. And we were, we were trying to kind of collaborate and get the team together on how we were going to present all the facets of the like overall bricks and, you know, the idea behind them, how , um, how learning through play works and everything. Um, and then we were so sad when that was canceled. So that was sad. Um, but the, the way that the project is working , uh, has, has definitely changed a little bit. And , uh , I think one of the good things about it is I , I hope that it will actually reach more people now , um , which will hopefully be good. But the , the role that that I’m having right now is to be the, the facilitator of two of the webinars that APH is hosting on instructional strategies for the LEGO Braille Bricks, so I think that I get one of the really fun parts of the job. Um, and I’m excited to get, to use the bricks with folks as they are joining in on the webinars. And we hope to play in real time together. And I think that it’s just one of those exciting things that I get to say, Oh , uh, what did I get to do at work today? Well, I got to play with the LEGO Braille Bricks at wo rk t oday. So I’m excited about that part and excited about sharing that information with, u m , a ll of the professionals and, you know, anyone else who joins in on the webinars.
Jonathan Wahl: 15:43
It’s fun to see all the eyes light up, even adults with this project, because everyone likes LEGO Bricks. I literally know no one who doesn’t like LEGO Bricks, unless you’re stepping on them in the middle of the night. So like everyone’s excited.
Paige Maynard: 15:55
Yes. Yeah. When I, when I very first got , um, the kits that Kate dropped off at the VIPs office. I took them home and I started playing with them. And then I was playing with them at my desk and then people , um, who work at VIPs , my coworkers would walk past them . They’re like, what are you doing? What are you playing with? What are you , you know, and they’re , everyone’s interested. And I think that has been really cool. And then , um , know of course I’ve had them at my house for some time. And , um, even before the pandemic , um, while I was, you know , still getting to know them, my , uh, my friend’s kids would come over and I have pictures of the things that they’ve built and my nephew comes over and he always he’s too . Um , and he asks , um, he, that he wants to play with the, with the blue LEGOs cause they’re in a blue box. Um, so of course with adults, he loves to play with the Braile Bricks.
Jonathan Wahl: 16:55
So as part of this LEGO has 90 activities that are meant to be teacher led. And I know you’ve been through those activities. What are your initial thoughts on how those will be helpful , um , to make this more than just playing, which is, which is part of the idea, but what are your thoughts on those, those lessons?
Paige Maynard: 17:13
I think that the LEGO Braille Bricks website is, is just, it’s so cool because it’s, it’s very easily accessible, I think, to two teachers and professionals, as we are working on designing activities. I think one of the really cool things that all the activities show , um, is that it’s just, it’s more than just using the bricks as a way to practice your spelling words or a way to learn letters. You know, like they, they show activities that teach so many other themes, but also through play as well, which was really cool. You know, there’s, I think one of my favorite activities, which it’s so simple, but I think that’s really the beauty of it because, you know, typically , uh , play activities are something that’s simple, but it’s just so much fun that you’re having with somebody else or it’s meaningful to you or things like that , um, is one it’s called save the turtles. And it’s just the , uh, a set of, you know, a small amount of the bricks. And , um , you put them in a ball and the, the child or the student, or even the adults , uh , cause I did the activity myself. Um, you work on like rescuing the turtles and putting them right side up , um , on the , um, on the mat. And I think that’s a really cool thing. So there are so many other activities like that that provide that meaningful, meaningful interaction with , uh , orientation and literacy and, you know, those tactile skills that have real readers need. And I think the, the activities listed on the website are really, really good for that. Another thing I think that the activities do a really good job of are helping to build that understanding of symbolic thought. Um, when I, when I worked in the classroom , um, for a couple of years at VIPs , um, I would, I would often notice that the children that I would serve who would have the least amount of vision who, you know, are typically going to be the braille readers , um, because they don’t get to observe , um, the world through , um, uh , you know, through their vision. They, they may often struggle with symbolic thought, you know, pretending that something is something other than what it is and using their imagination, manipulatives and things. Um, and I think that one of the fun uses of these, of these bricks is allowing for that to happen. And I think some of the activities that are listed on like right now, I’m , I’m looking here at frozen penguins and you, you take two of the bricks and you just put them side by side, just pretending that they’re those, those two little thing, ones that are, you know, together to keep warm , um, and having those, those sorts of activities I think are really helpful for building that understanding. But then we’re also working on so many other things, too,
Jonathan Wahl: 20:28
Lego Braille Bricks. Won’t be the only tool students who use to learn braille. But I know in my education, a lot of times for me, I like to learn things in multiple ways. So I would learn about the cell and the textbook, and then I’d get to play with the model of it. And then I might look at it under a microscope. Is that really what these bricks are going to provide? It just kind of another way to see braille and understand braille that just helps kind of diversify things for students.
Paige Maynard: 20:58
Yeah, I think so. I think it’s just, it’s another tool in the toolbox and it’s a tool that I think is really accessible to , to everyone and, you know, many, many students, you know, whether they’re braille readers or not, whether they’re visually impaired or excited can easily engage with them. And so it makes them accessible. And then, you know, it’s just this, this other thing that you can use that provides fun is something that students may already know about, you know, if they just have a LEGO set at home. So yeah, I definitely agree with that.
Jonathan Wahl: 21:34
I know because of the pandemic, you haven’t been able to use these with your students and your clients, but how useful do you expect they’ll be in a classroom setting?
Paige Maynard: 21:45
Well, I am so excited to see how teachers will use them in their classrooms. I think it’ll be really fun to get, to see all of the variations on the ideas and how children and students who are visually impaired and real readers , uh , engage with them and then engage with them alongside , um, sighted peers as well. So I think there’ll be really, really helpful for , um, bringing different kinds of learners together because you know, who doesn’t love Legos and you can, you know, as you’re, you’re playing with someone else. And I think that it’s really easy to do with this sort of tool. So I think it will be really helpful , um, in the classroom. And I, I’m just excited to see all the things that that people will do with them once they have them in their hands.
Jonathan Wahl: 22:41
Me too. I know the, the idea behind LEGO Braille Bricks, and really everything that LEGO does is that there is power in learning through play. Why do you think that’s important?
Paige Maynard: 22:53
That’s important too , because you know, it’s just, it’s, it’s a truth that no matter what our ages, no matter what our background is, everyone learns best through play. I, you know, I can, I can think of some of the things, you know, that I’ve learned through quarantine , um, and being, you know, in my house , uh , all the time. And there are all the things that I’ve learned have been, you know, new skills related to something I was curious about and something that had meaning to me and, you know, for me as, as an adult , um , you know, learning how to make a new kind of bread or something like that really is my play. And I think the , the real bricks also , um, are just , um , an indicator of that, that if we, if we’re learning through play it’s to us, it , um, it’s engaging to us. We can, you know, we can engage socially with others. Um, you know, we have that comfort level to where we’re able to learn new things and it’s motivating. And then also after that, it’s memorable. And so I think that’s one of the most important reasons why the braille bricks and the LEGO Foundation are , um, such big proponents of learning through play. So I think that’s one of the things I’m really thankful for being part of this project.
Jonathan Wahl: 24:21
Thanks much pays for your time. And it will be exciting too , to hear more as we are able to get these into the hands of students.
Paige Maynard: 24:28
Yeah. Thanks so much.
Jonathan Wahl: 24:30
If you’d like to learn more about LEGO Braille Bricks, I will include several links in today’s show notes, or you can just head straight over to legobraillebricks.com. That’s it for today’s episode of Change Makers. Be sure to look for ways you can be a Change Maker this week.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:15
Welcome back to Change Makers. My name is Jonathan Wahl. Today we’re talking all things Chameleon, APH’s brand new refreshable braille device developed in partnership with Humanware. The 20 cell device was made specifically for students, and that’s what we’re going to talk about today. When we decided to develop this new product, we didn’t want to just guess at what students wanted or needed. Instead, we pulled together a team including teachers to give us input. Joining me today are three Change Makers: Donna McNear an education consultant with more than 40 years experience as a teacher and O&M specialist, Liz Anderson, a TVI, O&M Specialist, and the Program Coordinator at the Florida Instructional Materials Center for the Visually Impaired, and Andrea Wallace , a TVI, O&M Specialist, and the Statewide Educational Specialist at the Florida Instructional Materials Center for the Visually Impaired. All three of our guests today provided feedback that helped us create the Chameleon 20. Thank you all for being a part of our podcast.
Andrea Wallace: 1:15
Thank you. Good morning.
Liz Anderson: 1:16
Hi. Good morning. Thanks for having us.
Donna McNear: 1:18
Yeah, thanks Jonathan. Good to be here.
Jonathan Wahl: 1:21
We appreciate each and every one of you. To start with, it’s important for APH that we make sure we include the right people when we’re creating a product and in the development stages, we want constant feedback. So we know that we’re creating the products that really matter. So, Andrea, we’ll start with you on this question. What was it like getting to be a part of the team that came up with the idea behind the Chameleon 20?
Andrea Wallace: 1:45
I felt it was a really great opportunity to collaborate with other professionals and, and learn from other professionals to hear what they are facing and what their needs are in relation to refreshable braille displays. But we also got to really have a great time talking about pie in the sky ideas and really shooting for the stars , um, and , uh, really focus on what students need to be successful in the classroom.
Jonathan Wahl: 2:10
Thanks, Donna, what about you?
Donna McNear: 2:12
Well, I’d like to add that in general, it’s always a privilege to be included on teams, bringing the teacher experience to initiatives and projects on behalf of children, parents, and colleagues. So being included on this team was particularly meaningful to me because of my deep involvement with electronic braille tools during my teaching career and ongoing advocacy for braille tools for kids, because I see literacy as a basic human right. And I believe in access and equity to content for children who are blind. So it was exciting to be at the table with engineers, researchers, leaders, consumers, and visionaries who are focused on truly making electronic braille product designed for all students, with the vision of being available to all students and everyone , um , listened to and respected all the voices in the room. So I have a sense of gratitude for having been included on this team .
Jonathan Wahl: 3:17
Thanks, Donna. And you mentioned around the table for people who didn’t have the opportunity to be a part of that event. It was very cool. I wasn’t in the brainstorming sessions, but people had, you know, colored pencils, papers, all sorts of things as they were creating their own dream wishlist of what refreshable braille could look like. So it was a really cool experience at least from the outside. Liz , what was the experience like for you?
Liz Anderson: 3:43
Well , so this was my first time really participating in the product development process at APH. And so it was really fascinating to see all of the different roles that were represented in that. And for example, I know we had Donna and itinerant teacher. We had a teacher from the school for the blind that was nice to see those perspectives in there. Um, and the meeting that I was in, it was a lot about the name of the product and the color . So it was exciting to, you know, kind of break out and talk about, Oh , what could this be? How could we make it really fun and innovative for the students that are excited about this? And , um, I really appreciated too that the product developers were there from human where , so they can give us that immediate feedback of what would be realistic and you know, what their perspective was on that. So I was really honored to be able to be part of that process.
Jonathan Wahl: 4:37
Thanks Liz. I know each of you have things that you’re passionate about. So I’d love to hear from each of you about what was your must have feature or your must have thing that you were hoping you would see as part of the chameleon 20 and Andrea, we’ll start with you again.
Andrea Wallace: 4:51
Oh, that’s such a big question. Uh , there’s so many things for me though. It was about keeping it simple, but also robust , uh, which is a hard thing to accomplish. Um, uh, we have to always keep in mind that it has to be something that many different students can use and utilize, and that teachers can also teach it and learn to use the device so that students can maximize its potential and use it to their functionality. Um, so I would say keeping it simple was, was really big for me, but the apps that are a prospect for the future for the chameleon are huge, that will help facilitate , um, literacy and braille reading and writing for students.
Jonathan Wahl: 5:41
Thanks, Andrea. Donna, how about you?
Donna McNear: 5:43
I want to talk about two must haves. So I always have to break the rules.
Jonathan Wahl: 5:48
Overachiever.
Donna McNear: 5:50
So from a navigation perspective, the software design needed to be efficient, straightforward, and focused on the, what I think of as the central literacy tasks for kids. So younger students can easily move around the functions and menus on electronic tool , um, must be there. And , um , because too often the design of electronic tools can be complex for blind students who don’t have the capability to just tap on an icon as young sighted children do. So , um, I’m excited about , um, being able to contribute information about that. And then also from a hardware perspective, the tool needed to be super portable. That means smaller and sleeker than what was previously available, but, and include a sufficient number of braille cells to support reading fluency for children.
Jonathan Wahl: 6:51
Thanks, Donna . Liz, how about you? What was your must have that you really wanted to see in the Chameleon 20?
Liz Anderson: 6:57
Well, so my must have, was really influenced from back when I was working in pool and seeing teachers struggle with getting devices to talk to district devices, getting files on and off of devices, you know, that kind of compatibility between hardware and software. They’re really just something that would give teachers and students a multiple ways of connecting and making sure they can really use the device. Um, especially some districts, you know, they have firewalls and issues with their networks where they’re blocking things . But so I really liked with this one, they had the SD card slot , but USB both for getting filed on and off, but you have the option of connecting by a USB port or Bluetooth. So I feel like with that, that really increases the chances that they’re going to be able to get the device to work the way they want it to. I was really happy to see all of those features.
Jonathan Wahl: 7:51
Thanks, Liz. Donna APH has been working to create refreshable braille specifically with an educational focus. Why is adoption of refreshable braille at a young age important?
Donna McNear: 8:05
So thanks for asking that question, Jonathan, cause this is like a very passionate topic for me. So as an educator for students who are blind, I always maintain a view of what all children are doing with literacy skills and how they are using technology and interactive media. So I examined , um, who, when, where, and how young children, all young children are developing early literacy skills. So with that in mind, we all want to provide supports to make lives better and early braille literacy development for young children , um , and their families. So we want to provide equitable opportunities to all young children who are blind and make all learning accessible. So to provide intensive braille literacy support. So our blind children have the same opportunities as all children. We need to supplement hard , copy braille, manual, braille tools and technology without real access with tools using refreshable braille. We need refreshable braille tools to give families and children the autonomy to read and write with the same opportunities and frequency. All children have to read and write. So we need a refreshable braille device for all students in all places. So all the children who need braille can learn. Also, I want to add when we consider what we are learning now about the developing brain and , um, consider the importance of what I call, touch thinking this is magnified. And so it is never too early to make a difference, make meaningful interventions and make learning accessible through braille for a young blind child and make it work for the family.
Jonathan Wahl: 10:02
Thanks, Donna. That’s exciting to hear, especially as we look to provide more braille in the future. Now, Andrea, I have a question for you that has to do with the cases. The Chameleon comes with several bright colored cases that you can snap on and off that was added after feedback from the session, why is it important for students with visual impairments to still have something that looks cool?
Andrea Wallace: 10:26
Well, kids are kids and they want to be individuals and they want to show off their personalities. We all have the ability to customize our phones with all kinds of different fun cases. Um, I have stickers all over my laptop, not just so I know that it’s my laptop. Cause all of ours look the same, but because I want to show off my personality too. So students with visual impairments are, are the same and , and they want to be individuals show their personalities and um, just keep things cool. If anybody remembers, when Ambutech came out with the brightly colored canes , I remember my student lost her mind over that. Like I can have a different color cane . So I think it is really, really important to be able to personalize your items.
Jonathan Wahl: 11:14
And I have to tell you, it’s been tough to get these products into the hands of students for feedback because of COVID-19. But we were able to get some chameleons and, and the cases into students’ hands. And they were so excited about which color they got to pick. And you know, it was a lot of work to get all those different cases worked out and size, but hearing the feedback from the students, I think everyone at APH, and I want to pass it along to you, were like “it was worth it. It was worth every headache to make sure they have that customizable options. ” We’re very excited about that.
: 11:46
Liz, Moving over to you. In your role, you work with teachers to decide what products your should purchase. So what are some things you’ve discovered that you need in your refreshable braille?
Liz Anderson: 11:59
Well, so with our center, really what we try to do is have a variety of devices that , um , teachers can borrow and try with their students because we recognize that every student has different needs. So every device, you know, there need to be a variety of options there based on the student preferences and need, and what’s going to best meet those students’ needs. Um, but I’m going to kind of echo what Andrea already said. We , we recognize that it needs to be simple and robust, so something that can easily be, learn how to use, but then can grow with the student . And we really want to make sure also that it’s something that’s going to be supported, which we really appreciate what this product that it’s human, where so we know Humanware is going to be there for a long time to make sure that the device will still be usable and functional for the student .
Jonathan Wahl: 12:50
One more question for you, Liz , thank you for that. Um, a lot of students this year spent the latter portion of their school year at home. Um, being someone who helps provide students with the resources they needed, you see an uptick or increase need for refreshable braille, as students started learning from home this year.
Liz Anderson: 13:08
So we actually didn’t see too many , um , new requests from us for refreshable braille display it . And we think it’s because students who would benefit from one of the devices already had them. But what we did see was more request for technical assistance from teachers. So teacher realizing, Oh, I need to be learning how to use the devices and increasing my skills so I can help my students learn how to use the devices. And we did , um , have some teachers where we gave them the device and the student had the device at home as well. So we have enough available to be able to do that. That’s what we can do for teachers so they can see exactly how the student is using the device. So , um , I think that’s one kind of, one of those sort of benefits from all of us as teachers realizing they need to be comfortable and knowledgeable as all for the students to be able to learn how to use the device.
Jonathan Wahl: 14:04
Thanks. That’s good feedback for us as well as we provide training for teachers virtually, we definitely want to be able to provide everything teachers need Donna, moving over to you. Um, what are the internal features of the chameleon that you think are going to make it a great tool for students?
Donna McNear: 14:20
Um , thank you. So Liz kind of touched on a few aspects of the Chameleon that’s important, but , um, and I already mentioned the importance of a tool having navigation, which is what I call manageable for the student. So the chameleon has that manageable navigation because it has capabilities focused on the essential skills for literacy, which is reading and writing. So the editor application and the chameleon allow students to write efficiently and the library application allows the student to read a wide variety of materials. So these two applications create a literate environment for a student to read and write independently and without the distractions and complexity of tools designed for adults. And so then there is also , um , some great connectivity with mainstream devices, allowing braille access to a wider range of applications. And this is really important to many of our families. So information also is easily shareable with others through the USB port and the builtin Brill translator. So there are of course other applications, but these are the ones that make it a great braille literacy tool for our students.
Jonathan Wahl: 15:44
Thanks so much, Donna. Andrea, there’s a good chance, a real good chance. It looks , um, that a lot of students are going to be learning from home this Fall. Any tips on virtual instructions for teachers as , as a way to help students who may be having , um, learning issues at their braille device at home, or just want to get better at it?
Andrea Wallace: 16:06
Such a, a big question and a tough question. And all of our students are so different and there’s no one size fits all answer to that question. But , um, I think the biggest thing is for us as teachers to recognize as Liz kind of touched on earlier , uh , this is a time for us to grow professionally and get better with technology. We did see a huge need for that. So as much as teachers can get their hands on the device before it gets to the student, write lesson plans, write a task analysis, get familiar with the navigation like Donna was talking about. And I did find the navigation on the chameleon is I love it. It’s super easy. It’s intuitive. It makes sense. Um, so I think if teachers sit down, become familiar with the device, write those lesson plans, have it ready to go. Um , and when you run into problems, who’s our first person to call tech support and involving students in that process as well and modeling it or having them ask the questions. Um, and also involving family members when possible get family members familiar with the device so they can help support and facilitate that learning when you’re not on the call. Um, it’s, it’s different, difficult times that we are in and we’re having to change a lot of our delivery methods of instruction. And we have to start thinking outside the box. Uh, I think a lot of us saw on Pinterest and other areas, those DIY like a milk crate with a tablet on top. Uh , so you could use the camera to see what the student’s hands are doing. So there’s lots of stuff out , um, collaborating with your colleagues , um , on their strengths, providing virtual instruction will also be key. It’s just, it’s such a hard question to put in a nutshell, so pardon my rambling, but there there’s a lot.
Jonathan Wahl: 18:02
You’re fine. I understand it. And to anyone on this call or anyone listening, if you come up with great ideas or something that works, let us know because we love to share that we’re trying to help teachers as much as we can in our role as well. Uh, one final question for all of you, you can just jump in in whatever order works. Price is always important, but when you’re making refreshable braille, it can be tough because you don’t get the price breaks of mass producing an item, just because the need isn’t there. We kept the , we were able to keep the quarter price below $1,500. How do you all think we did on the pricing for this product?
Donna McNear: 18:40
Okay . How , uh , I’ll jump in here, Jonathan. So I , I just want to say when I think about the transformative reform initiatives that make a difference to educating children, I think about scalability and sustainability. So having a tool with the power of the chameleon 20 at a price, which I consider affordable it’s transformative because I see it as scalable to all children who read and write braille. Um, when I discussed braille accessibility sometimes with , uh , people in general, I sometimes talk about , um, what I term braille economics and the real costs behind the everyday hard copy braille. We supplied to children, which we often do not realize because of the hidden subsidies behind braille production. But when people start to think comparatively, they usually usually reflect on the price of refreshable braille and then they start to change their mindset when they have that bigger economic picture. And so the chameleon has the potential to be in the hands of all students who read and write in braille. And so it’s really exciting to envision a future where braille is available to all students and in all environments. And I think the price , um, allows that.
Jonathan Wahl: 20:08
Thanks, Donna, that’s good to hear any , anyone else have feedback on the price?
Liz Anderson: 20:13
Oh , I’ll say something. So I really liked the point that Donna made about the cost of producing hard copy braille materials that are , we’re very much aware of how much it costs to produce hard copy braille, but also for us, because we are trying to provide as many devices out for trial and loan to teacher to test with students, the more affordable they are, the more we can have available, but we, you know, more students are going to be able to try the device at once. Um , so that’s really for us as an EOT with APA, that’s a great benefit to have something that is simple but robust and the going to be able to grow with students over many years. And Andrea and I were looking earlier this morning at some of the different devices that are out there, and this really is very reasonably priced for what you’re getting. And maybe Andrea can add to that.
Andrea Wallace: 21:11
So to piggyback off of what Donna and Liz were saying about the cost of braille books, it is quite pricey, but again, our, our students do need access to that, that literacy. Um, so I think it’s a really great and fair price point when looking comparatively at other refreshable braille devices out there, it’s not just a refreshable braille display. It’s not just our , and it’s not just the big, intense , um, computer like device. It’s , it’s a nice meeting in the middle. And I think the price point definitely reflects that and especially providing , um, an appropriate number of cells as Donna had mentioned earlier for students to maintain , um, a good , uh, fluency for reading braille.
Jonathan Wahl: 21:56
Well, thank you to each of you for your role in this project. I hope you are as excited as we are, that the product is is out and kids are now going to be able to get their hands on it. We’re very excited. We appreciate the work you’ve done. And, you know, at APH we say a lot, the future belongs to everyone and we believe part of that is everyone gets braille . So we are excited to be along on this journey with you all. Thank you so much.
Liz Anderson: 22:21
Thank you so much for having us.
Andrea Wallace: 22:22
Thank you.
Jonathan Wahl: 22:25
If you’d like to learn more or order a Chameleon 20, just head over to aph.org and search for Chameleon. I’ll have a direct link in the show notes as well. That’s it for today’s episode of Change Makers, be sure to look for ways you can be a Change Maker this week.
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Jack Fox: 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:15
Welcome back to Change Makers. My name is Jonathan Wahl, and today is our 10th episode. If you haven’t been following along, be sure to go back and listen. All episodes are available on Spotify and Apple podcast. On today’s episode, APH, president Craig Meador is helping us get the big picture behind what it takes to provide the right resources for people with visual impairments. Here at APH, we primarily focuses on educational materials, products, and resources, but there’s another really important portion of our field. That’s the medical side: diagnosis, research and management of eye conditions. Today, Craig sits down with two Change Makers from the Wilmer Eye Institute from Johns Hopkins Medicine. Our guests are Jim Deremeik, the Education Rehabilitation Program Manager at the Low Vision Clinic. He’s worked at Johns Hopkins for 26 years. And Judy Goldstein, the Director of Low Vision Rehabilitation Services at Wilmar, and an Associate Professor of Ophthalmology. She spent 10 plus years at a private low vision practice and has now been with Johns Hopkins for more than 15 years working in clinical care research and teaching. Here’s APH President Craig Meador.
Craig Meador: 1:24
Well, first of all, I want to thank you both for joining me today. This past year I had the opportunity of, and I’m talking to the field here, because I have had the opportunity to go to the Wilmer Eye Institute. And that was a magical place. There are, there are few places to go in our field , and I’ve been in the field a long time. And that is definitely a bucket list destination for anyone who is a professional in this field, because it represents such a rich history. And it is the nation’s leading research facility, but not just research -It is practice. It’s so many cutting edge technologies that are being put into practice on a day to day, In real time it was a fascinating visit. I was pinching myself the whole time I was there because of not only the history, but all the future that is happening there on a day to day basis. So , Dr. Goldstein and Jim , if you guys would take a little time, because I know we have a lot of listeners, we have a lot of young teachers , and rehab folks who know of Wilmar, but don’t know Wilmar, if that makes sense. So if you guys could take a little bit of time and just tell us maybe a little bit about the history, but even more importantly about the history, of the work that is going on right now at the Wilmer eye Institute at Johns Hopkins .
Jim Deremeik: 3:03
Great, thank you for the introduction. And it’s our pleasure to share some of our experiences at Johns Hopkins with the field. For those that aren’t familiar, Wilmar is part of the Johns Hopkins medical health system. It’s located in Baltimore. There’s a very rich history. In fact, this year, Wilmer is celebrating its 95th anniversary. It was founded in 1925 and derived its name from an ophthalmologist from Washington DC , who was recruited to set up the first university ophthalmology training program. And thusly it’s named Wilmer the gentleman’s last name was William Holland Wilmer. And he set the tone for where Wilmer is today in terms of providing eyecare to give you an example of some of the marks that he left. He was the one that established vision requirements through research for the aviation industry, that early precedent back in the 1930s, from his experience in the air force set the tone for the research that was developed with the intent of being functional. Another area that he set forth early on, that folks in the field should be aware of. And most people probably at Wilmer aren’t even aware of He in 1929, had the foresight to set up a department of physio optics. Basically the physio optics is what today, the low vision operates under. From our viewpoint, what this refers to is function. So it’s related to the function of the individual with any kind of visual concerns. Wilmer, as I mentioned, has been around 95 years. One of the strengths that it’s had is its continuity and its dedication to its mission, and to appreciate where we’re coming from with the mission . Let me just share with people the mission statement of Wilmer itself: Wilmer is to contribute to the ophthalmic knowledge and intend to reducing blindness and visual impairment at home and around the world through education research and patient care. Thus that carries out today six directors later with the same intent I’m going to share with you just a few names to give you a , an appreciate for some of the history that we’re talking about. I mentioned Dr. William , um, Collin Wilmer, who is the first individual, but another name that is familiar to some, and maybe if you’re familiar within low vision is Louise Sloan. She was the second director of the physio optics cleaner. Louise Sloan is noted and known for developing low vision devices back before it invoked to have low vision. She also, today, if you look in the history, she is the one that developed the M notation for reading cards and print, and a lot of the reading texts material that you use today, very strong background in optics . Another name early on in the history of Wilmer was a resident who became an ophthalmologist. His name is Dr. Richard Hoover. Dr. Hoover was recruited from the Maryland school for the blind where he was teaching math and PE, went back to medical school and after medical school went on to specialize in ophthalmology from experience at the school for the blind, those that are not familiar with Dr. Hoover, which may be some, he is credited for basically being the father of the long white cane. His is background and interest in parlaying that developed the field of orientation mobility. And for the historians, it’s called “parapatology”. It’s got an official science name. He came up with a technique. He worked with Warren Bledsoe in helping , to develop a science behind this and Russ Williams, after an experience of getting a rehab program set up at Valley Forge, where he then went and got Heinz rehabilitation center in Chicago, set up for world war II veterans today, dr. Hoover’s name is associated with vision rehabilitation center here in Baltimore to carry on the work and legacy of his name . Another name that people would probably have some connection, the education field as Dr. Arnold Patz in the late 1950s, Dr. Patz, who was the director of Wellmark. And in terms of the eye center had a strong interest in the infants that were going blind. At that time, it was called ROP retinopathy of prematurity, who is Dr. Patz. His theory that a lot of these young infants were getting too much oxygen and basically it was blinding them his work and working with this ended up in coming up with the identification of a cure and a whole new epidemic of students entering schools, sort of blind where now you’re having sites even classes in the late fifties, early sixties to these young infants, so that the Patz had done a lot of work and remained that through the rest of his life in working for getting functional programs set up for these young infants having vision problems. Another individual in terms of highlighting some of the people that have been at Wilmer’s, the Dr. Robert Massof, who came to Wilmer in the early 1970s and help under Dr. Patz his direction set up a vision rehabilitation center within the department of the intent of this was to do research and intervention directly related at low vision though, the center was doing that before. This was being very specific to specific to Dr. Patz, his interest of coming up with some cure and technology that would assist in the treatment of blind, visually impaired individuals. This led to a cooperation and a history of working with the lions and thus the name lions you’ll see in the rehabilitation center. And they were the funding source in helping to do the Low Vision Enhancement Project. The first head mounted display that combined magnification contrast and , um, technology in terms of trying to enhance work with folks that have vision problems. So this just highlights a little bit in terms of some of the work that goes on at Wilmer, but all the work goes back to the mission statement of research, teaching, and patient care. And a lot of that’s done through a working clinic. So hopefully it gives you a little bit of a background and a quick overview of how the center is set up and what the intent of it is.
Craig Meador: 10:07
So that would be enough in itself right there to say, this is a must see place, must go to step foot on these hallowed grounds and be amazed. But there’s a lot of when we were there, the research that is going on, I was just blown away. Do you have any, maybe you can speak to some of that, of what the current initiatives are going on and, and some of the things that are happening there a t Wilmer.
Judy Goldstein: 10:33
Sure. Um, I’d be happy to , um, we have several research, educational quality improvement initiatives that are going on at Wilmer these days and some date back to some of the references that Jim was making and we’ve continued them and others are relatively new. So , uh, to take off on what Jim was saying, you know, for several decades, there’s been a real focus on head mounted, display technology, and how this technology creates an opportunity for vision enhancement. Because these closed optical systems offer unique opportunities to control the lighting and the contrast and the magnification. Um , we recognize this is probably the future of vision enhancement. Decades ago, as Jim mentioned, the development of the Elvis head mounted display by Dr. Massof made significant enhancements in offering magnification to people with severe vision impairment. Um, but more recently , uh , with the advancements of technology and computing , and off the shelf systems like virtual reality systems , uh, dr. Massof and his team have been working to modify the magnification approach within some of these head mounted, display technologies, testing what we call bubble magnification technology, which essentially only magnifies part of the scene of interest , um, which perhaps is more functional for, with impairment. We know that when we magnify the entire scene, we lose fields of view . Um , so if we can magnify parts of the scene or even magnify in the area where the patient is looking , um , that might enhance their function. Uh , additionally, the team is working in this area is focusing on using the same technology for the purposes of telehealth and other types of research. So we know that , uh , the ability to gather data remotely in cost effective and reliable ways , um , has big advantages when people are doing research, they’re oftentimes sending people out into the field to gather data that’s expensive, complicated time consuming.
: 12:33
So if we can , uh , modify this head mounted display to measure , uh , contrast sensitivity, visual acuity , um, and even things like eye movements , uh , we may be able to gather data in a much grander way and a much more reliable way , um, just by using this existing technology and modifying it. And it should be pretty cost effective. Another area where we continue to focus on , um , and this has been a longterm work and we just , um, are continuing to make progress is on the measurement of visual ability. And that’s the ability to perform activities that depend on vision for the low vision field. This is a very familiar term to us. Um, but sometimes it gets clouded. Our particular area of interest is primarily with the use of patient centered measures. Uh, we refer to these as visual function questionnaires, and we recognize that the field is still really without a consensus on how do you measure visual ability when a patient walks in with vision impairment, you know, we know how to measure acuity and contrast and visual fields , but how do we really measure function? And so this lack of a unified approach , um , creates complexities. And we know that we need to standardize the measurement so that we can compare results between studies to advance the field. So our focus over the past few years has been to take some of these most commonly used instruments, these visual function questionnaires and calibrate them, right. We wouldn’t measure acuity if we didn’t have a certain level of luminous or optic type or things like that. And the same thing holds true with these visual function questionnaires, they need to be calibrated and regulated. So we’ve done this with one questionnaire known as the Ivy , and we’re currently doing this calibration with the activity inventory. And we’re currently working , um , to actually calibrate the national eye Institute visual function questionnaire, which is probably one of the most commonly used VFQs. And we recognize that if we can improve the psychometric properties of these instruments by calibrating the items, or we’ve called these activities , um, and we can improve our analytic approach , um, we can then compare results across studies centers. So one of our team members, Chris Bradley has developed a new analytic approach called this method of success dichotomization. And that improves the accuracy and the precision in the measurement of visual ability. And what’s really unique about his work is that he’s taking these methods to measure visual ability and not requiring people to understand complex analytic methods and buy special software and learn how to use it. But he’s taking these approaches and putting them in a very user friendly approach, such that someone could measure visual function just by putting data into an Excel spreadsheet. So we think by making this simple and easy for other to use others to use , um , we can provide some level of consistency in patient centered metrics. You know, on that same vein doctor , John Daniel is doing something similar in his lab where he is , um , measuring patients with ultra low vision , um, and not only using VFQs, but performance measures. So this work in the field of outcomes is critical to advancing the field. Uh , some other areas of work that we’re, there are a lot. So I probably won’t be able to mention them all, but another area of focus that’s a particular interest of mine is the work in , um, low vision rehabilitation care delivery in patients with chronic ocular disease. And I think most everyone in the field recognizes that there are significant challenges in connecting patients to care. Uh , there’s been a lot of work that’s been published on the barriers, things like transportation, acceptance of loss of vision , um, thinking that nothing more can be done, but really honestly, little meaningful change has been made. And we’ve been working , and collaborating to identify patients potentially in need of care and connecting them to service at the time of their visit. And what we did was we recently completed , uh , almost it was a two year study. It was a pilot project where we created an electronic healthcare record advisory, where patients who met a certain level of visual acuity criteria or a diagnosis criteria , um, we basically have a popup in their medical record and it would base , it would say that these patient is potentially in need of care. Physicians would receive this advisory real time during the visit, and it would give them an opportunity to remind themselves about counseling the patient , um, about care. ‘Cause the underlying principle here is that in the course of a busy clinic filled with, you know, 40 or 60 patients with glaucoma or retina problems, you know, physicians may really inadvertently lose sight of the need for care. And so if we can put a time to notification, right, when the patient is there, this may be a very practical, pragmatic approach to remind physicians about connecting their patients to care, because it may take multiple conversations with patients to convince them that service is important and needed and beneficial. And sometimes we’re not talking about vision enhancement . Sometimes we’re just talking about education, counseling and acceptance. So we’re really excited about this opportunity to improve healthcare delivery and connecting people to service. Just a few more research initiatives a nd educational i nitiatives initiatives. I think I’d like to mention is that, u m, some members of our team are working o n v ision a nd aging, which is really important. And the LOVR net group, which is the lions vision research group , um, or the lions vision rehabilitation network. And in that area, we partner with lions called volunteers to obtain critical patient data on function in advance of the appointment. So they may administer multiple questionnaires to give the clinician data so that when a patient comes in, we know all about the patient rather than spending 20, 30 minutes to try to understand what is the background? What is the function, what is the emotional, physical, and cognitive health of these patients? Um, so there’s , um, these are just some of the initiatives that we’re working on right now , um, the fellowship program and the ophthalmology residency program, or also some of the educational initiatives that we continue to work on. So I hope that gives , uh, the listeners just a little bit about , uh, some of the areas that are of interest to us and hopefully the field
Craig Meador: 19:42
That’s amazing. I mean, so many of these I’m writing notes, furiously, as you’re talking, we could spend podcasts on every one of these, but, you know, I would just want to hit on a couple notes and, and , uh , Jim, your, your background is in a rehab and this whole bit , uh , once again, just to reiterate for audience Wilmer is this like one stop shop. It’s just the most amazing thing because patients are coming in there for care , uh, for follow up care for , uh , there’s all this research going on. It all. I mean, if you haven’t been to the website , uh , listeners need to get out and look at the website because the research is in depth and it’s huge. And the level of service is amazing, but patients are , uh, um, but I find this amazing to hear you say, Judy, that, eh , one of the challenges, even though you guys have it all in, you’re doing it all. It’s connecting. If I, if I say this wrong, please correct me. But this idea of being able to connect people to care at the time of the visit and, you know, that’s as coming from the educational part of it, this was always one of the, the big , uh, of frustrations we had in education circles is getting , uh, education and the medical tied together so that our students and the adults we serve had a, a full, complete program. So I guess I take some solace in the fact that if, if Wilmer is struggling with some of the same stuff, we’re all in the same boat, and it’s a frustration for all of us within the field, and maybe either one of you can talk to this. I mean, that’s obviously a big hurdle, but , uh, you know, do you have answers for that? I mean , it sounds like you’re working on some of those and poking at a lot of different ones, but what are those hurdles? And what’s the best way that you guys have found to address that? How do you connect all those dots?
Jim Deremeik: 21:50
Well, one area that’s been addressed is it’s inherent in some of the professional preparation and training, what we’ve done. And Judy alluded to it is on the residency program. Now as part of their training, they’re required to actively participate in the low vision clinic. So hopefully you’re beginning to instill a need and a value in low vision rehabilitation is they spend some time in the, in the setting going through the clinic. So it’s not just taking an online course, they’re right there and doing it. The other part to expand a little bit more on what we’ve done in terms of trying to address it with the helpof Alliance funding, it, we provide a one year fellowship fully funded for an op optometrist or ophthalmologist to go back and practice in their own area to promote the whole need and service a low vision rehabilitation. Um, but Craig, to your point, we struggle with some of the same issues and the program that Judy alluded to, in raising awareness is I think I let her talk a little bit more, we’re trying to change behaviors and patterns of referral, and , uh , it’s easier said than done, but we’re continually going over it. And I think her reference and results indicate it can be done. And I let Judy talk maybe a little more detail on what our program actually accomplished.
Judy Goldstein: 23:08
Sure. So I, you know, we, we strongly believe, and I think lots of fields , um, comply with this, this , this idea of continuous quality improvement, right? You have to give people feedback to know how to make things better. Um, and so with this program, we felt it was really important to not only notify , um, all subspecialties of ophthalmology, who participated in the program, that their patient may be eligible for service. But also in that vein, we provided monthly reports to tell them how many times did you have a patient who met the criteria of the patients who met your, of the patients who met the criteria? How many people did you recommend service for, and of those people that you recommended service for? How many of them actually got connected to care act , how many actually showed up for care? And this was an observational study.
: 24:01
So we didn’t do things like intervene, right? We didn’t call the patient and say, Hey, your physician referred you. We were just trying to look at the, sort of the natural history, I guess I would call it of what happens to the patient when you have some type of advisory. And what we tried to do was use some of the existing standards that in play are in place. The American Academy of ophthalmology several years ago, came out with the preferred practice guidelines, which essentially said for any patient, a worse than 20, 40 best corrected in their better seeing eye, those patients should be considered candidates for education, rehabilitation, referral. You know, it’s sort of varied, but anybody who is probably worse than 2040 best corrected could potentially be having difficulties with their function. And the same thing holds true with certain diagnoses. And so what we chose to do was use this 20, 40 cutoff as part of our pilot project. And , um, what we observed was probably only on the order of about 15% of patients who met the acuity criteria and also a diagnosis. We only found about 15 % of patients , um , were recommended for service. Um , and about another 14, 15% were , um , thought to already be under care. But somewhere around 70% of patients were not referred. And this may be very legitimate. Maybe these patients don’t technically have need for service. Maybe they’re functioning fine. Maybe they have other comorbidities that preclude them from benefiting from rehabilitation as their ophthalmologist feels . But one of the things we know from some of the prior work done out of Hopkins out of Wilmer and our group is that even low vision specialists are no better at chance of predicting success in patient’s rehabilitation , um , progress. So if you ask a low vision specialist, what’s the likelihood that their patient is going to succeed as part of the process. Once they’ve seen them again, no better than chance. So if we, as low vision specialists, can’t predict, I don’t think we can reliably ask ophthalmologists to do the same. So what we feel that we’ve sort of calculated as some sort of baseline metric of how many patients are being recommended for service, when you know , they meet a certain criteria and then of those, how many actually come. And what we observed in during the time of the pilot was just under about 40% of patients actually came for care. So now what we can do is overly additional interventions, right? We can call, we can continue this for a longer range plan. We can expand this to beyond 15 physicians, but , um, medical care is complicated. Physicians are busy. Um , patients have a lot of need. And I think that we have to be realistic in our expectations about what we’re asking busy clinicians who are managing difficult ocular disease , um, to do. And when they’re busy dealing with drops and laser and medicine and surgery , um, it often doesn’t leave time to leave these other conversations or to have these other conversations with patients. So if we can remind them, I think that would be a big step forward in the field. Um, and with the advent of electronic health records, it seems , um, sort of some low hanging fruit.
Craig Meador: 27:30
It’s obvious we have some gaps. You’ve both alluded to some of this. We have a gap between , uh, uh, the connection of care. We have a gap between research and treatment. And I think there, I definitely have seen this from education. Sometimes there is a gap between research and practice. Um, and you may can speak to several other gaps that you see that are keeping you guys up at night, but how do we start to close those gaps? I mean, you can pick any one of them or you can , uh , address all of them, but if you’ve got some ideas, how do we start to close some of those gaps? So that , uh, so that most current research is, is, is being tied. Uh, so , uh , whether that be education or rehab that , that we’re actually making sure our practices are , are following what we know to be true and what we know to be proven in best.
Jim Deremeik: 28:32
Well, I’ll start this discussion because we’ve had this discussion many a day in the clinic, two areas to add to your laundry list of concerns are one funding and two talent pool, the human resource section. What we’re doing with some of the research is trying to address that. So as a transfer to the practical application, I’ll give you an example. One of the concerns specific to the older population is a limited number of appropriately trained service providers to do the service. We’re seeing a shrinking pool right now with people that are coming out, interested in human services, and those that are , are not qualified. So one of the programs that we actually instituted was using Alliance and we referred to it as lover net, where we use lines, who had an interest in vision were in the community and provided training to them in the area of vision and working with this population and to provide service.
: 29:30
Judy alluded to some of the work that we’re doing by on the phone, doing questionnaires, providing a history for the low-vision exam. We were also working with them to go in a and do very basic practical environmental modifications, not to take the place of a trained rehab professional, but the compliment and add to the existing service providers. So, as an example, somebody might have a moderate vision loss say 2040 to 2080, 2100, that needs proper position of a lighting or needs some help putting batteries in a magnifier. They are the point of contact that go out on onsite and do it. We’ve set up programs to address that just as an example, because this is becoming a recurring problem for us. We’ve also set up a , um , program at Hopkins where we’re calling emerging leaders in low vision rehabilitation, where we’ve targeted third year, optometry students inviting them to come out , uh , for a two day stay and shadow with a low vision clinic to get their interest in low vision. So on a professional side , we can get more people involved in providing the clinical care that we’ve been able to do through sponsorship of one of the vendors session box been kind enough to do it. And we’ve had two years of experience doing that, where to our surprise and encouragement the response was overwhelming. And the intent was if these people are interested in it, the pursue a career in this, or if extremely interested, they might consider coming for a low vision fellowship. So that’s one of the areas that we’re addressing right now, the , uh, the , the manpower shortage, trying to be creative in our day to day function, another area. And I’d be remiss if we didn’t bring this up , um, is funding for low vision rehabilitation up until the mid nineties that wasn’t really covered. We wrote white papers that were published in the journal, vision rehabilitation, doing documentation. So that low vision rehabilitation would be compared to rehabilitation medicine. So for the first time under the vocational model, a lot of these services were covered. Short-lived though a B, but at least we had a precedent right now, the services that are covered are by licensed folks. And this is a misnomer. We just need to make that clear services for low vision rehabilitation are covered by occupational therapists, physical therapists and speech language pathologist , because the license, if they’re providing it in training, most folks we will work with. We’ll do the appropriate training and vocational area where the O and M the rehab teaching traditionally are not funded through insurance and Medicare. So we’re looking at efforts trying to show the outcome, the impact of the service specifically to O&M, where there’s justification to go back and say, these folks with the appropriate service are traveling safely in your environment so that we have a case to build, to show that this data that support the profession, the other area that has , um, gotten a lot of interest is low vision devices and reimbursement. They are specifically excluded by law by Medicare being reimbursed. So what we’re trying to do again, is to go back and set up a case with some actual science and data to show. This is the impact that these devices have made and keep keeping people safe, independent in our home environment and leading to their independence. But up to this point, it’s all been hearsay. There hasn’t been the outcome study or the documentation to justify the cost I get Judy could add to it from here.
Judy Goldstein: 33:14
I’ll just add to that manpower shortage issue. Um, and part of that manpower shortage , um, as it relates to the economics, is that many people don’t want to go into the field of low vision rehabilitation because it’s not reasonably reimbursed when we’re in a situation where we’re caring for patients, and it takes an hour , um , to really evaluate and consider treatment options for the patient. And it’s reimbursed at a level that really is an impossibility to , to manage . Um, it , it dissuades people from going into the field because they worry about things like student debt loans and such. Um, what may be promising on the horizon is that there is some buzz that , uh , Medicare January 20, 20, 2021 is going to begin to change their payment procedures, such that time-based payment , um, is really reflective of an increase essentially for , um , subspecialties such as low vision neurology, neuro ophthalmology , um , and those kinds of fields that Medicare is going to begin to reflect the time-based treatment.
: 34:22
We can currently build based upon time, but the incentive , um, or I should say the reimbursement of that time currently really isn’t adequate . So , um, you know, there is some possibility that we’re going to see some changes in that field , um, that people will say, okay , I can reasonably go into this field and pay off my student debt and make a living. Um, I think that precludes a lot of people from maybe taking on that additional year of fellowship or that additional year of training. Um, I agree wholeheartedly with Jim is talking about in regards to the visual system equipment, you know, currently we are able to evaluate the patient , um, but when it’s time to treat them and provide visual assistant equipment , um , that’s really just not available. And we don’t see that in physical medicine and rehabilitation when a patient has a hip fracture or a fall , uh , that Walker or that cane is covered by Medicare. It really is in many ways, people have called us sort of discriminatory, right? So against people with vision impairments, we really do need to fix that. And that’s obviously going to have to happen, you know, at a federal level. Um, so, so we hope that, and that’s a gap that absolutely has to be closed. Um, and , and the other area that I would mention is this sort of universality of the standards for delivery of practice, right. We know that there are now standards for referral for care, and we’re working to try to Institute , um, you know, procedures to emphasize that referral , um, through like the electronic health record. But what about, you know, the standards for the examination and the people who are doing that? And so , um , in some prior work , um, we began to develop some of these standards, you know, what constitutes a basic low vision examination, what constitutes a complex, low vision examination, what should be done? And what do you do with the findings that you obtain ? The optometry schools have taken a real , uh , lead in this area , um, in developing their curriculum. And we’ve done so recently, even with our fellowship curriculum, making sure that every fellow has similar or the same type of experience, the same type of exposure , uh, that the prior fellow does, right. It’s consistency and training is critical. Um, so those gaps in , um, the care , um, have to be closed as well. Uh, so I, you know, I’m, I’m fairly optimistic that these things will come with time. Um, it’s a relatively young field, but we certainly , um, although we are quite advanced, maybe on the outcome side compared to some other fields and rehabilitation, we’re certainly not on that same playing field when it comes to reimbursement
Craig Meador: 36:57
Yeah. You , you know, especially in this , uh, I think we’re all familiar with the 15 minute incremental medical model , uh , which seems to reward , uh , an efficiency of practice of pushing people in and pushing people out. And we know that that’s just not our, that’s not our customer base. That’s not our consumers, that’s not the patients we work with. They, they, it takes time to arrive at conclusions and to fully educate and train . That’s a , that’s a shame, but , uh , that’s , that’s a bug bites us all , um, resources , uh , once again, you know, realizing that most of our audience that will listen to this are probably more in the education and rehab field as opposed to, to medical. Um, and I, I think so many times the great work that’s being done at, at , uh, Wilmer as well as , uh, other , uh, programs like Wilmer that information isn’t, I would say, and I could be wrong here. So I’m speaking for the field. So if I get some hate mail and fully able to take that on and, and apologize in advance for that, but I don’t believe that all of us are , uh, accessing or having easy access to the findings and the research that’s being done say at a Wilmer , is there an easy way, what’s the easiest way for us to access that as practice petitioners of , of education and rehab?
Jim Deremeik: 38:36
I think that topic is one we’ve come to realize, and we’re reaching out to try to partner with other organizations to make some of this information available and accessible. I know APH has made a move to set up their hub and, you know , uh , get some of this information and we’re pursuing work with organizations such as yourself, as well as making some of the findings that we have more available to the general public. We probably have done a poor job in getting outside our traditional audiences. And we’re realizing that now, as we’re finding more and more , uh, effort to reach out beyond the traditional providers to get this information in the proper hands. So I think there’s a concerted effort to go out of our comfort zone and get out of the box and to make this information available in different formats, in different agencies that we traditionally probably have not looked
Judy Goldstein: 39:35
I know that we’ve also been trying hard to get out to , um, the local community, but even on a national level, talking at meetings that we wouldn’t have traditionally gone to. So we had meetings that, you know, maybe are not medically driven, but more rehab teaching driven. Um, and for example, last year I attended a conference that really sort of opened my eyes. It was filled with , uh , people from state agencies, vocational rehabilitation agencies, and, you know, it was eyeopening for me because , um, you know, oftentimes we’re all in our own little bubble and it’s really hard to get outside of that and see, you know, what, what goes on. I think that there are real, we really lack in the communication systems. So I think a great example in a place that we’ve really struggled is , um, youth with vision impairment in the school system.
: 40:25
So specifically writing reports , uh , regarding IEP or 504s, or, you know, whatever it is. And, you know, we’ll go ahead and we’ll put that information out there. And then it’s incumbent upon the parent to sort of push through these recommendations or discuss these recommendations, but there often isn’t time the community often isn’t the communication between the school system. And , um, for us, let’s say at Wilmer . Um, and so I think that, you know , as the educational system changes , um, and perhaps looks at ways to bring in some of this additional information that comes to them and have maybe honestly , um, more honest discussions about what’s needed by , um, kids in their educational system, or even in the vocational rehabilitation system. I think it will improve, but historically there have been, I think, some dividers , um , that exists . And I don’t think these are intentional. I think that we often, as I mentioned, get caught in our own little bubble and , um, everybody’s very busy and it’s hard to always communicate , um, that’s in the best interest of that individual in need. Uh , so hope that that improves With time.
Craig Meador: 41:37
I hope this doesn’t sound like I’m putting this all back on, but the medical community to get a set of information, cause we have a responsibility , uh, to, to ask the questions and to reach out and do the digging through the medical journals to find out what’s what’s going on. Um, I, you know, I had one wish for everybody and this may not even be something that’s open to everybody because it may just overwhelm Wilmer, but you know, it just having that chance to visit there and walk and be invited into , uh , research labs to see the work that is happening. Uh , I mean, I just, that was just beyond eye opening and then to have the conversation that we did at lunch, where we were able to just all sit around and swap stories and, and, and hear the latest greatest, it was, it was very uplifting. Uh , it gives me a lot of hope for the field and , uh, it, I think it always does a heart good . When you realize that you are, you are on a similar mission with many other amazing professionals that are doing some incredible work and have given their life and dedicated their have a passion for, for the spiel that the work that still needs to be done. So it’s, it’s been good. So listening audience, if you haven’t been to Wilmer , if nothing else get up there and , and , uh , when , when we’re able to, I know COVID right now, has everything pretty much shut down, but hopefully it will come a time when those doors will be open and you can get a tour and talk to the folks that are up there. Um, lot of topics today, like I said, we could, we could do multiple podcasts. Maybe we’ll revisit some of these in the future, but just trying to wrap up and be respective of everyone’s time , Judy or Jim, if there’s any, any last thoughts or any last comments you’d like to make , uh, to our audience, I give the floor yield before to you at this time?
Jim Deremeik: 43:52
Well , we appreciate the opportunity to share some of our work , uh, with the folks at APH and put it out to a larger audience. And I think you are doing one of the things that addresses one of the issues that you raise as the gap. One of the concerns I see in the field overall is a lack of leadership , uh, in terms of direction. And I think some of these efforts such as this podcast, some of the movements that you’ve done with Vision Aware and Family Connect and reaching out to community are what’s needed and getting pissed, territorial control to make , uh, open access to all areas, information in any way we can help with that. You know, we commend you on the effort
Judy Goldstein: 44:31
I echo Jim’s sentiments. Um , and also want to add that, you know, many institutes and many academic medical centers are really doing important work in the field of vision loss, vision rehabilitation, both for storage strategies and rehabilitation strategies. Um, and as we move ahead, I think that it’s going to be very important for us to critically examine or continue to critically examine the work that we’re doing in the field that we stay focused on our true mission of improving visual ability in patients and their function in their everyday lives. Um, and so, you know, that commitment not only needs to continue, but we really need to take a hard look , um, as we have been , um, in the way that care is delivered and we need to continue to improve it. Um, we have seen a tremendous shift in the type of patients who seek care with vision loss, especially in the older adult population.
: 45:24
We’ve gone from really more severe and profound vision loss to a more mild and moderate loss and in the aging population , um, we can’t emphasize enough , um, what healthy aging looks like, and it’s people being engaged both physically, emotionally and cognitively in their everyday activities and vision rehabilitation professionals are such a critical part of making that happen. So, you know, I look forward to continuing to improve this, and I’m very grateful to APH and other organizations like APH, you know, have been really instrumental in making sure that these missions and , and , and the voices heard , um, really to be advocates for people with vision loss.
Craig Meador: 46:05
Well, we appreciate it . The both of you taking the time today , uh, to , uh, provide us with , uh, just some really exciting things that are going on as well as just , I guess if nothing else I said, I said earlier, it takes some solace knowing that we share some of the very same struggles and , uh , we are all pulling together in a common direction trying to achieve the very same thing. So , um, for our listening audience, and it’s our hope that , uh , the future of APH is that , uh, as to highlight a lot of the work being done at Wilmer , uh, through, through the Connect Center and through other aspects of , uh, APH media, because we , we believe this is important stuff that will not only make you a better practitioner of the work you do, but will inform your practice. And we’ll also provide , uh, hopefully some hope and some direction for families and for the, the people you serve.
Jim Deremeik: 47:06
Thank you.
Judy Goldstein: 47:07
Thank you.
Jonathan Wahl: 47:09
Thank you, Greg , Jim and Judy for taking the time to be on Change Makers today, we appreciate everything you do. That’s it for today’s episode. Be sure to look for ways you can be a Change Maker this week.
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Dr. Lauren Lieberman: 0:01
I want every child to know that they can do sports, they can achieve and they can be successful. And that nobody can tell them that they can’t
Jack Fox (Intro): 0:12
Welcome to change makers. A podcast from APH, we’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:26
Welcome back to change makers . My name is Jonathan Wall. Summer is here and that usually means sports and sports camps. There are some incredible camps around the country and the world for children with visual impairments , but because of COVID-19 , they’ve had to either cancel camps or go virtual today. We’ll have Tristen Pierce on the show. She’s the physical education and multiple disabilities project leader at APH. She’ll be talking about ways to keep your kids active this summer. But first we’ll hear from Dr. Lauren Lieberman. She’s the leading expert on physical activity and sports for children who are blind and visually impaired. She is a well published author. She started a camp abilities in Brockport, New York, and she’s helped start sports camps across the world for children with visual impairments, Lauren, you’re a true change maker . Thanks so much for joining me on the show.
Dr. Lauren Lieberman: 1:13
Sure. It’s great to be here, Jonathan. Thanks so much.
Jonathan Wahl: 1:16
Absolutely. Now for people who don’t know, you tell me a little bit about your mission and what you do with sports camps and working with young people.
Dr. Lauren Lieberman: 1:25
Sure. I’m a professor, a distinguished service professor at SUNY Brockport in Brockport, New York. I teach adapted physical education and my background, I started my career at the Perkins school for the blind in Watertown, Massachusetts and I taught in the deaf blind program, adapted physical education. And I went and got my doctorate at Oregon state university. And then I was fortunate to get a great teaching job at SUNY Brockport, teaching adapted physical education. And my first year at Brockport, I wanted my students to have an opportunity to teach children who are blind, visually impaired. So I started camp abilities, which is an education national sports camp for children who are visually impaired, blind or deaf blind. And since that first year, many children from other states tried to come and join our camp. And I realized that we’re letting so many children in from other states that we were having fewer and fewer kids from New York. So I tried to help other states and other areas start camp abilities . And so we started our expansion in Alaska, in west Silla , Alaska. And since then, you know, after that, we did Maryland, Connecticut, Arizona, and just totally blew up from there. And now we’ve got over 20 camps in the U S we have eight camps in other countries. As a matter of fact, this past fall, I had a global Fulbright scholarship and I traveled around the world and started capabilities in Ghana and in Ireland and in Brazil for children who are visually impaired and blind sports camps. So that was a really wonderful opportunity. And, you know, we’re continuing that. Now we just started our website for the capabilities in Kenya. And , uh , we’re just growing by leaps and bounds, which is really making me happy
Jonathan Wahl: 3:24
Funding come for these camps. Is there fundraising that goes on, do you pay to attend the camp? How does that,
Dr. Lauren Lieberman: 3:30
That is a great question. Some camps run on expanded core curriculum, transition funding. If they’re with an agency, for people who are visually impaired , uh, other camps like mine, we’d write grants and we get donations. And then we also can charge for some kids, a tuition. So all the camps are different. But what I know is that we all have to do some fundraising and some grant writing reports and each camp is run a little bit differently depending on the agency or the person that , that sets it up.
Jonathan Wahl: 4:04
You know, most people who are sighted , wrongfully think that people who are blind don’t do won’t play sports. Why are these sport camps and these kinds of activities so important as an opportunity for children and young people who are blind?
Dr. Lauren Lieberman: 4:20
I think a lot of people, especially people that are older like me, when you’re , when we were growing up, we never saw people with visual impairments doing any sports because most of the kids were at schools for the blind. And so there’s a false perception because we never saw people who are visually impaired or blind doing sports. We just never imagined that they could do sports. And so it was just one of those things that if I hadn’t seen it, I just didn’t know it existed. And so fortunately, a lot more kids with visual impairments are doing sports now in the community, their peers are seeing them and perceptions are changing, but there are still a lot of people out there who just never had the opportunity to see someone who is blind, ride a bike, or run a 5k or hike a mountain. And so they just believe that that , that they can’t do it because they’d never seen them do it. And so what we try to do with capabilities is not only teach the kids what they can do, but encourage them to set goals and advocate for themselves throughout the school year. So they’re out in the community, they’re playing on sports teams, they’re in community programs and people see them on a day to day basis and they change their perceptions. And so our goals are not only to make the kids feel good about themselves and do typical activities for their age, but also to educate the community about the abilities and the possibilities of people who are visually impaired and blind. One
Jonathan Wahl: 5:53
Of the things I love about the camps when I looked at photos and videos from , from various camps is the hands-on aspect. That’s showing the student what it feels like to be in a proper running stance, things like that. COVID-19 through a major curve ball. Um, how are you all adjusting? I know you you’re offering some virtual opportunities. How have you all adjusted to , to still offer something for students, even if it’s from home ?
Dr. Lauren Lieberman: 6:19
That’s a great question. So when it first came up and when we realized that we weren’t going to be able to have the camp face-to-face of course I spent a day being depressed. And then I thought about getting the proper equipment into the hands of all the athletes and then about how we could have literally a zoom virtual camp so that we would still have our coaches. We’d still have our team leaders and our team, our sports specialists. And we mailed every child box full of equipment, bell, basketballs, bell soccer balls, a miniature gold ball . We ha we mailed them a shot put and the discus and a Guidewire to help kids who are blind run independently and a tether and a yoga mat and a beach balls just for fun. And we sent them also like a whole list of what they can do with all the different pieces of equipment. And we’re going to be teaching them how to use all this equipment. So we’re going to be teaching soccer, yoga, fitness, track, and field goalball . And the kids are going to be able to do their assessments and set goals so that they can do these sports and activities all year long,
Jonathan Wahl: 7:50
Ton of equipment. You were able to send a student’s homes. Did you have to do additional fundraising or get a sponsor to make that happen this year? Or were those supplies that you already had from previous summer camp ?
Dr. Lauren Lieberman: 8:00
Well, this is the miracle that happens when you run a program that your funders like. So this was our 25th anniversary and we had gotten amazing grants. I mean, grants that I never dreamed of, it was going to be epic. You know, we were going to do a 24 hour goalball marathon and we got a grant just for that $10,000. And so when we realized that we couldn’t do the 25th anniversary face-to-face camp, we asked our funders, if they would still fund a virtual camp, it’ll be our first ever virtual camps . We can still have our 25th anniversary hopefully next year. And all of our funders were so happy that we could still have the camp. Cause they realized as isolated as sighted children are at home during COVID kids who are visually impaired and blind are even more isolated. Not only is it harder for them to get out and do things independently, but they also can’t get close to their peers to be guided or tactically taught or engaged, you know, tactically in any activities outside of their family. So the isolation is actually expanded or exacerbated for kids with visual impairments. And so these funders were just thrilled to help us to help us in and give us the money to make sure that this happened. And they all said, you know, apply for this grant again for 2021 for your 25th anniversary. And we’ll still give it to you. So we even had to tell a couple of grants, people that we don’t need their money this year to just hold onto it till next year, which was unheard of. You never say we don’t need no thank you. But thank you. So we’re really fortunate that the New York state commission for the blind, which is also known as the office for children and family services was, is funding us, the kidney foundation, Golisano foundation, Theresa , everybody said, we’re still going to give you the money. So the equipment was no problem. We also got some discounts from some of the equipment companies and some of the equipment like the guidewires and the tethers we created ourselves. And so we put this whole big box, we call it capabilities and a gym bag, you know , it’s a whole bag of camp and sent it to all the kids and when they opened it. So we had, we had our first practice virtual program to two Wednesdays ago. So two weeks ago, Wednesday, we had it and the kids open their boxes. And we explained to them all the equipment that was in there and they were just thrilled, thrilled. Oh, one of the other things that we gave them, which I absolutely love, it’s called a soccer trainer and you tie it around your waist, it’s Velcro. And then the other end Velcros around any kind of ball or Frisbee or implement. So for example, if you wanted to kick a soccer ball, even if the ball has bells in it , it still will come back to you. You kick it. And this, the rope is Alaska elastic. So it comes right back to you. You can dribble a ball, you can kick the ball, you could use it with a Frisbee, anything that can be Velcroed in, you can practice and it’ll come right back to you. So it might not work with golf, but it’ll work with a lot of other sports. And so this soccer trainer was key and the kids absolutely loved that. So getting to, you know , put in there, what all the kids wished I, we , we contacted some of the kids and said, if you could get any equipment you want and what would you want? And we put in most of the equipment that the kids wanted, the kids said that they would use. And so seeing the kids open that box and take out everything and describe it to them was just a joy. And so then last week, when we met with the kids, they were telling us what equipment they were using the most and what they were practicing with their siblings or with their neighbors, if they could. And then we talked then tomorrow night is our last mini virtual camp before the real camp. And we’re doing a parent training to teach the parents how to teach the kids and how to assess and set goals. And it’s just going to be amazing. We have several Paralympic athletes that are going to be zooming in and talking to the kids and encouraging them. We have Kevin Broussard, who’s from the United States association for blind athletes. He’s going to zoom into our opening ceremonies. And we also have Terry Kelly who is a blind musician from Canada, and he’s going to be playing during opening ceremonies. And , uh, you know, it’s just a great lineup and we’ve never done anything like this. And I know it’s not going to be easy at the beginning, but I know it’s going to open up a lot of doors for a lot of kids. And, and it will also give us a chance to maybe even do this more times during the year and check in with all the kids and make sure they’re doing goal setting and advocating for themselves and really looking forward to , uh, to making sure that they can meet some of their goals and objectives related to sport and physical activity.
Jonathan Wahl: 13:16
I know the slots in your camp are full. Are there other opportunities for any parents or teachers who know someone who might be interested in an opportunity like this for them to still get connected before summer is over?
Dr. Lauren Lieberman: 13:29
Yeah, I would say if they email me or if they email any of the other camp directors and ask them about their programs, like I said, Saratoga capabilities, long island cabby , which is the Utica camp, Nebraska, Florida. And I’m pretty sure that the camp spark , which is through the Northwest association for blind athletes, I’m sure they’re going to have some programs with camp spark. And the Delaware capabilities I think is in a couple of weeks. And I think the Delaware camp will also have some spots.
Jonathan Wahl: 14:08
Awesome. If, if there is a family who just can’t make one of these virtual camps happen this summer, any tips or ideas for things young people can be doing from home with their families ? Oh, sure.
Dr. Lauren Lieberman: 14:20
Yeah. On our website capabilities.org, we have a lot of educational videos and we’re also going to be taping all of our sessions for our camp. And so if any child wants to just jump in and learn, have a soccer lesson, so you have a bell soccer ball or just a soccer ball, or you want to learn fitness or yoga. So that that’s a really cool opportunity for people once camps over actually we’ll probably do as even day by day, we’ll it up on our website and say, it’ll be called virtual capabilities and then we’ll have links to the zoom lessons.
Jonathan Wahl: 14:59
Awesome. I’ll be sure to put the capabilities website in the show notes so people can have access to your website. Just one, one final question. If there was one thing you want your participants to know when they leave your camp, what is, what is the lesson you’re really hoping they, or the takeaway they get from the camp.
Dr. Lauren Lieberman: 15:18
I want every child to know that they can do sports, they can achieve and they can be successful. And that nobody can tell them that they can’t and that if they want to join a marathon or ride their bike across the country or run a 5k or be on the gymnastics team, there’s a way to do that. And that we can help them get there and they can learn how to advocate for themselves because any sport can be done with modifications with children, with visual impairment, we’ve done so many different sports, but some people just don’t know how. And that’s what we try to unlock the door to the sports that have often been seen as impossible for people who are blind and visually impaired. And that’s our goals. And that’s what I want kids to take away. And that I know that I can do that. We’ve had so many kids have success on their after-school sports teams when they thought they couldn’t do it. And they came to camp and realized, oh, I could do that. I can be on my swim team. Sure. And so also just to let you know, on our website, we have videos of popular afterschool sports and how kids with visual impairments can be included in those after-school sports.
Jonathan Wahl: 16:34
Awesome, great resources. Thanks so much, Lauren. We really appreciate you being on the podcast and we wish you the best of luck with your summer camps. And, and we hope that your second 25th anniversary celebration is even better than the first one could have
Dr. Lauren Lieberman: 16:46
Been . Yes. Thank you so much, Jonathan. And thank you for giving us the chance to share our story. And we hope that people will be part of our story because it’s, it’s an ever-changing journey and we hope to start more capabilities around the country. And I just want you to know that we on our website under the media tab, we have a link to the capability startup manual. If anybody’s interested in starting their own capabilities, whether it’s virtual or face-to-face, we have a step-by-step manual that will help them do that. It’s the first two tabs under media on the capabilities.org website. And we’d love to help people start more camps.
Jonathan Wahl: 17:27
Perfect. Thank you so much. All right . Thanks Jonathan. If you’d like to learn more about capabilities, we’ll have a link to their website in the show notes. Now we’re talking to Tristin Pierce from APH. She is passionate about providing the tools children with visual impairments need to stay active and be involved in sports and physical fitness. Kristin , thanks so much for being on the podcast.
Tristan Pierce: 17:51
Well, I’m happy to be here and kind of excited to get to tell everyone about physical activity and sports
Jonathan Wahl: 17:58
Summer is here. So I think we’re all ready for it. Uh, you know, we’re talking about physical, co-education tell me a little bit about your background and also your role at APA.
Tristan Pierce: 18:08
Okay. Well, I am originally from Louisville, the home of APH, but my early years in children’s educational publishing was in Boston in Chicago. And that was all through the 1980s, literally 1980 to 1990. And , uh , then after graduate school in Vermont, I lived in Rhode Island and I worked with the Institute for international sports and we got to organize and host the first ever world scholar athlete games, which was very exciting. We brought in like 1600 students , um , from around the world , um, who had the potential to be a future leaders of the world due to their academic prowess and their ability in sports , um , which develops great leadership. So that, that was a fun experience to get to , uh , be a part of. And , um, I have been involved in sports and physical activity my entire life. And then , um, after graduate school, my studies took me to Haiti where I worked with children in an orphanage. Uh , many of whom had multiple disabilities. So then upon my return to Louisville, I was lucky enough to find a job where I could combine my interest in publishing sports and disabilities . So I, I feel very, very fortunate to have landed at APH.
Jonathan Wahl: 19:39
We’re fortunate to have you trust in. Now we know that physical activity is important, but let’s talk specifically about physical education for children who are blind. That’s something that oftentimes gets left out. Why, why is that so
Tristan Pierce: 19:54
Well , um, many studies have shown that individuals who , um , have visual impairment or blindness are less physically active in general. And as, as children, they are behind their sighted peers in the development of gross motor skills. And, you know, it’s, everyone knows it’s important to maintain an active lifestyle, to prevent weight gain and subsequently developed diabetes and to maintain a healthy heart, just like sighted appears , you know, this isn’t something just for kids with BI that that’s for all of us, but those of us with sight, you know, if you’re, you can be, you know, four years old , uh, sitting in the car , uh , sitting at a red light and you see a group of kids over there in a field playing , uh , a ball sport or , or doing anything, I guess a lot these days, you may see kids at a skateboard park, you know, you see that. And so you just kind of learn about things because they’re available to you every time you open your eyes. Well for a student who is visually impaired or blind , uh , that, that is not the case. And so you, you actually need to help teach them about the gross motor skills , uh , which will then lead to them to be able to do these sports and to teach them about the actual sports themselves. And , uh , also to , to maybe guide them some towards those Paralympic sports, which may help them to develop a career as an athlete, which is purpose , you know, definitely, definitely an ability , um, available to it, to any student. So , um, I would just say, you know, also the majority of the children with visual impairment and blindness, you know, they go to their local school. They’re not at a residential school for the blind. So like going to a summer camp is a great way to develop friendships with other children who have visual impairment and blindness. And it also , um, you know, helps lead them into , uh , like the way you and I were discussing before we started the podcast. You know, just playing sports with friends, you know, you and I both had a great opportunity playing volleyball growing up. Well, you know, if you learn these skills in your PE class, you make friends in your PE class. Uh , there’s absolutely no reason why during , oh, let’s say spring break or summer breaks, or even winter breaks, why you cannot get together with those schoolmates, those school friends and participate in activities together.
Jonathan Wahl: 22:43
I think that’s important too. It’s, it’s not just physical activity. It’s also that , um, community as well for people,
Tristan Pierce: 22:52
The socialization, the development of leadership skills is so, so prevalent in playing team sports. You know,
Jonathan Wahl: 23:02
Now we have these great summer camps and programs throughout the country, but those opportunities have changed this summer. Some of them have canceled with COVID-19 and how that’s impacted. So many of us, what are some things families can do from home for parents who still want their kids to be active
Tristan Pierce: 23:22
Well for families that include a child with a visual impairment, you know, they can really do just about anything that any family can do. Okay. Um, the use of sound devices make target activities very accessible. You know, whether you’re wanting to , uh, if you’ve got some neighborhood kids or if you’re just doing it within your family, if you’re not to the point yet of, of socially interacting, you know, with some kids in your gesture family, depending on how large your family is, you know , um, you know, something as simple as, as relay races, you know, you can have all those, those team things with a sound of vice you , um, whatever your going to be. Let’s say , um, you’re going to be a , collecting an item in your relay race at the end. Um, you’ve just put that sound target at the, the item location, or let’s say, you know, if you’ve got horseshoes set up or a lot of people play corn hole in your backyard, you just put that sound device at the other end so that they have a target to throw your bean bag or your ball or whatever, or to run towards , um, you know, people think, oh , uh, if , if you’re visually impaired or you’re blind, you can’t jump rope. Oh my goodness. Yes, you can. Um, and if you have a student who may also have a motor disability and maybe jumping the off the floor is not there , they’re just not ready to do that yet. Maybe they can just go up and down on their toes, up and down and your toes. That’s a good workout. Just go up and down at your toes and move your hands. We, there are hopeless jump ropes out there. APH has a rope plus jump rope in there, a jump rope for fitness kit. And it’s just strictly these little handles you hold on to , they have a little cord off the handles with the little ball and you just move your arms like you’re jumping rope, but you never have to leave the ground. You can just binge your knees or go up and down on your toes. Like I said, or you can hop, you can jump. Um , that, that kit, we also include like an orientation match , but you know, you could just use any type of mat you have at home. And the purpose of that is because we all migrate when we jump , we, we may not realize it , but yes, sighted people, we migrate when we jump as well. So if you’re jumping on a little mat and all of a sudden you feel one foot’s off the mat and one foot’s on, you know, you need to kind of migrate back in that direction to get yourself centered back on the mat. So just using a mat to jump rope with that, that is very, very doable. Um, you know, running, you can always hook a Guidewire up in your backyard. If you have a yard, that’s got some trees, or maybe you have a chain link fence around your backyard. You could hook a Guidewire up from one side of the fence to the other side. And you , you could just hold onto that Guidewire, but I have to tell you, you’re not really moving your arms in the proper position , uh , that your arms are not moving freely from your shoulder, which really does help with your gait when you’re running. So if you just hook a carabiner onto your Guidewire and then hook a loop rope like a rope, you just tie in a circle, hook it onto your carabiner and hold on to it. Then your arms can move freely. And that will really, really help with your gait when you’re running. Um, you can even play tennis. And one of the things I like to do with practicing tennis , um, we do have a tennis ball that has these, these bells inside. So you can hear it when it hits and bounces and lands. So if you do not have someone to volley that tennis ball back and forth, you can just drop the ball. When it bounces up, hit it with your racket . It hits a wall, comes back down, hits the floor again, when it bounces up, you hit it again. So basically you’re just playing tennis against yourself, as hard as you want to hit it, or as soft as you want to hit. It kind of think about how people play racquetball in an enclosed room. You can do that same thing inside your base. I guess if you have a basement or an open garage, if, if someone wants to move the cars out of the garage, or if you have , um, maybe a wall somewhere at a local park, you could hit the ball against the law. But , um, I have done it here at APH up on in our conference room, up on the fourth floor. I just go up there and I whacked the ball against the wall and play against myself all the time. That’s a nice little stress reliever too . Um, you know, everybody, if you have a swing set or a jungle gym in your backyard, there’s absolutely no reason whatsoever. Why just because a child has a visual impairment, they cannot play on those. It’s, you know, fun, you know, experiment, you know, it’s, you know, all of us, all of us, you know, we’ve fallen down and we’ve gotten back up when we’ve played. It’s no different for those kids with visual impairment, you know , none whatsoever, you know, go on a family hike. Like you told me this weekend, your family went kayaking. There’s absolutely no reason why your family can’t go kayaking , um, hiking, kayaking, all those activities , um, and that you may do at a park or in an Arboretum, or go into a , uh , a forest. You know, there are, you know, what, here in Louisville. And I , and I know when I lived in Chicago and Boston, both just about every city has at least one cemetery that is like almost like a beautiful park. I mean, we’re fortunate to have one that has a lake and swans and ducks and fountains and beautiful monuments. You know, they’re also very, very beautiful places that you can safely go hiking in as well. There’s um, another great thing that a family can do this time of the year is to plant a garden. Think about it, Rosemary, basil, Sage, those, the olfactory sense of those plants growing. You’re just rubbing them in your fingers. You know, lavender, you know, so many things are great, but if you’ve , if you’ve got like a , uh , an herbal garden with these, these delicious smelling and tasting plants in them, you can then incorporate them into a family cooking activity as well, learn about recipes. Um , one of the products we have is called lots of dots. It’s for younger children, it’s called , uh , lots of dots learning my ABC’s lots of dots counting 1, 2, 3, and then lots of dots coloring the garden. They’re meant to be used sequentially they’re coloring books, raised glide prints, coloring books, but the activity guides that come with them have all kinds of expansion exercises that you can do. And particularly , uh , coloring the garden. It uses all kinds of plants and fruits and vegetables. And that includes a lot of little recipes that the whole family can do together. So that’s just a , a sampling, I guess, of some of the things that you can do in the summertime to keep the family up and active and doing things together. Now .
Jonathan Wahl: 31:02
So many opportunities out there, but, you know, young people have a lot of energy. So for parents who are used to a summer camp or some other outlet, just, what’s your word of encouragement for them as they head into summer with young people full of energy?
Tristan Pierce: 31:16
Well, you know, I say for young people full of energy to just let the energy flow, you know, just let it open up, try new things. I mean, it’s an experience for the whole family. If you try new things, get out of your comfort zone, you know , um, we all learn in life. Like I said earlier, we all fall down, but we get back up and you may try something completely new, you know, there’s , um , we, we, we published a book years ago. I, I may be available as a free download now on the APH website, it’s called going places. And the places stands for preferences, leisure activity, awareness, choices, experience, and then skill development. And it takes you through a process of researching and learning about new activities you never ever knew about and how you go about learning about them and how you try things new and develop your skills. And it has personal stories of , uh, people who are visually impaired and blind and about their sports and what they had to overcome, what were obstacles and what their future goals are for that sport. And it is till this day, one of my favorite favorite books to play, because it teaches them about something new that’s in their local community. That’s what it’s all about is what’s available in your community. And, you know, I, I would also like to tell people too , um, if there is no camp available for them that consider starting one, there’s a publication available online at the , uh , camp abilities website that will tell you exactly how to start a sports camp. So maybe use this year to do your planning. And maybe this time next year, you can have a sports camp in your town if you currently do not have one. But I think the main thing I want to stress is that we can all do the same thing with encouragement, with some modifications or adaptations. I don’t think there’s many things out there that someone, an individual or a family cannot do if they don’t put their mind to it. And you just teach a little bit by bit, may be a little task analysis. Um, but in the end, I think every person who wants to be successful in an activity or a sport , um, can, can achieve that perfection that they, they want. Yeah.
Jonathan Wahl: 34:17
So much trust . And I’ll be sure to include some information on those products. You mentioned this show notes, and I just thank you for all the products you do make and for all the physical activity opportunities,
Tristan Pierce: 34:29
You know, and one last thing, Jonathan, for those families is, you know, the internet, it all has to, it all comes back to the internet, right? So just do a search. There are tons and tons and tons of YouTube videos out there. And I mean, specifically blind, alive, it’s all audio, very detailed instructions on doing exercises. Uh, revision training is another , um, Bo both of these blind, alive revision training , um, have, have your families do a search for them.
Jonathan Wahl: 35:02
Sounds great. Thanks so much Tristan , for being a part of the podcast.
Tristan Pierce: 35:06
Thank you, Jonathan, for asking
Jonathan Wahl: 35:08
If you’re looking for tools to help out this summer, head over to aph.org and search for physical education to find everything we have to offer, that’s it for today’s episode of Changemakers, be sure to look for ways you can be a change maker this week.
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Jack Fox: 0:02
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:16
Welcome back to Change Makers. My name is Jonathan Wahl. Today. We’re talking all about Code Jumper an accessible way for students to learn about computer coding. We’ll hear from Cheri Bortleson, who develops STEM and computer science curriculum. And we’ll talk with Robin Lowell who wrote the curriculum that comes with code jumper. But before we get started, if you’re new to code jumper, I just want to tell you a little bit about how it works. Code jumper takes block coding, something that’s usually taught visually on a computer screen, and it puts it on the table in front of you. It’s something that you can manipulate with your hands code. Jumper consists of a plastic hub and pods, and you use wires like a headphone jack to connect them together. Then using tactile knobs, you can create story songs and even tell jokes. As students work with code jumper, that the complexity increases – You learn how to loop and pause your code, and even how to create if then statements. Code Jumper is an introduction to coding that levels the playing field by creating the access for students who are blind or visually impaired. At APH, we believe everyone should have an opportunity to learn how to code opening doors to meaningful and well paying jobs. In the second half of today’s show, we’ll talk about how easy it is to teach code jumper with the included curriculum. But first, we’re going to talk with Cheri Bortleson. The Computer Science Curriculum Developer for the Bellevue school district in Washington state, Cheri was one of the first teachers to test code jumper, and she did it with kindergartners , a younger age group than code jumper was designed for, but still with great results. Cheri, thanks for being on the podcast.
Cheri Bortleson: 1:52
My pleasure.
Jonathan Wahl: 1:52
Cheri, tell me a little bit about your introduction to Code Jumper.
Cheri Bortleson: 1:56
I was fortunate enough to learn about code jumper through a parent who actually works for Microsoft research and she’s a parent of a child (audio glitch) schools, and she happened to mention , um, about the Code Jumper and wanted to know if I wanted to learn more. And how could we think about using this in our schools? And so from that point, I, you know , really tried to identify like where we would have students that would benefit from this and then began to really think about the tool as not just for students with visual challenges, more about like, how could we use this setting , um, in a more inclusive way,
Jonathan Wahl: 2:37
Cheri, I know you held a coding camp as a way to test code jumper. Can you tell me a little bit about how that worked?
Cheri Bortleson: 2:44
After first learning about the code jumper and trying to think about how we could implement it in the classroom setting? Not just in more of a, setting one-on-one with a particular student, we actually identified a kindergarten classroom that we thought, Hey, and what, what if we could use this tool in the classroom, not just with the student, with the visual impairment, but with all the kids, much more of an inclusive manner. We wanted to introduce them to the basics of computational thinking, what is an algorithm what’s debugging, what are loops, and then this idea of everyone can code. And that’s really where by design, we brought in Code Jumpers. So with this classroom, kindergarteners was very interesting because there was the one student with an identified visual impairment. And then there were several other students who are receiving , um, special education services in other identified areas. And then we had several , multilingual learners in the classroom. And so what we decided to do is set up stations, learning stations, because this is a very typical way. We teach kids in kindergarten, any during literacy and math and writing. And so we thought, well, why not just do that for computer science? We would introduce the topic for that day. So for the first day it was say algorithm and coding and everyone can code. So we really felt it was important to set the stage of learning environment. And so from there, and we divided the kids up into four stations. So one station was where the kids got to learn and start with play an exploratory play with code jumper. Another station was where kids were applying those concepts with code.org. Another station was what we called unplugged . That was a connection to literacy, where they do , um , you know, here a short excerpt of a storm writing about computer science. And then another station was an unplug that would reinforce the concepts . So the students had the ability to learn the concept and then have it reinforced it’s in several stations. So what was exciting about it is all the children in the classroom were learning code jumper. And what I loved about it is I think it just really gave us an opportunity to set the cultural norm around how we load and who learns to code, and that we can use a variety of tools to learn how to code code jumper was designed for students ages seven to 11, but it sounds like it was useful with kindergartners as well. Tell me about how they responded. I think it was successful because we approached it in a small group setting. So as the students rotated through stations, you now, we hook the exploratory avenue first in that first, session to show them something simple, talk about the components and then let them try it out. So again, because the Code Jumper has, you know, all these sophisticated pieces that can be added on. We just started with, you know , one simple mechanism and then added on a little each week. So kids are so curious and engaged and especially at that age, you know, they just don’t have any preconceived notions about like how things should work and Oh, you know what coding is. And so we were really able to, you know , uh , take advantage of that natural curiosity and they kids want to turn knobs. They want to listen. And they, you know, those having multiple inputs was very engaging for the kids
Jonathan Wahl: 6:42
Code Jumper is meant to be inclusive. What was it like to see all of the students working together, getting to learn with the same tool?
Cheri Bortleson: 6:50
You know, it was great because I think it , one thing it does is it just normalizes how we learn instead of saying, well, the student who has a visual impairment or the student with more behavior challenges is going to go over here or typically, you know, what happens is it might be occur within the classroom setting, but it might be, Oh, we’re going to have the teacher or paraprofessional work with that student and use that tool while everybody else uses this tool over here. So I think what we really wanted to do was just say, we are all learning all the tools. We want kids to help each other and learn from each other and build on that knowledge. And that’s something we really saw happen where kids , um, you know, we really promote working in pairs there’s and pair programming and solving any way . And so this was just another tool we could have kids work together.
Jonathan Wahl: 7:53
Cheri, what is your favorite part of Code Jumper?
Cheri Bortleson: 7:57
You know, just something with the sound and music. And I think there’s just, you know, at least in the elementary range, there’s not a lot of tools that have the feedback and the auditory piece. So I think that’s exciting. We’re really trying to have kids see computer science and coding is a creative endeavor and as a way, can express themselves and express their ideas. And so the tool like this is just another Avenue for that to happen for students. I mean, we want students to feel like they have a voice and they can express their creativity and their ideas. And this is another really powerful for all kids to be able to do that.
Jonathan Wahl: 8:45
Cheri, it’s been great learning about how you used Code Jumper. Thanks so much for taking the time to talk with me today.
Cheri Bortleson: 8:51
My pleasure. I’m so happy to extend the conversation around computer science and inclusion and accessibility for all. So thank you so much for the opportunity.
Jonathan Wahl: 9:02
To test code jumper, Cheri worked with Robin Lowell. Robin has been involved with Code Jumper from early on. She’s a true Change Maker. She spent years as a special education teacher. She wrote the Code Jumper curriculum and she’s a senior manager of accessibility for i2e. Robin, thanks for talking with me today.
Robin Lowell: 9:23
Thanks for having me here.
: 9:23
Robin, you know, you created and worked with a lot of the Code Jumper curriculum. Walk me through the process. How did you go about creating that curriculum?
Robin Lowell: 9:34
Well, when we were creating the curriculum , um, we really wanted to make it so that it was accessible and easy to use as possible. So accessible in terms of not only having access for those who need it such as a screen reader or large print, but accessible in terms of teachers feeling comfortable , uh , to use it. It’s really challenging cause to jump into a whole new way of thinking with coding. Um, so it’s really important that when you’re looking at the product and , and , and with code jumper and looking at the curriculum that is not overwhelming and you feel like, yes, this is something that I can do. I can learn and I can teach my kids.
Jonathan Wahl: 10:20
And Robin , how did you actually go about creating it? Did you work with students? Did you test it? You know , what was the process of writing and problem solving and brainstorming to create what ended up as all these really important lessons for students?
Robin Lowell: 10:36
Yeah, there was a , the brainstorming process and , and I think this is one of my favorite all time projects, just because of the creativity. So we were having to think way outside of that box of how do we create curriculum that is , um, not only good for our students with visual impairments, but that can engage a whole entire diverse class of students so that all of the students feel like this is something that has been created for them. So when we were creating it, we were testing it out on our own kids. We were testing it out on kids that we worked with. Um, and, and just really thinking about it, also testing it out on other teachers and thinking about, and talking to teachers about, is this something that you would do? So a lot of research went into , um, the efficiency of the lessons to make sure that they can be done, you know , within the lot of timeframes, such as 30 minutes , um, there was a lot of research and thinking and , uh , problem solving and starting over from scratch on, is this a lesson that a student would really be engaged in? So we , we talked to , um, all different kinds of kids and we took our lessons into classrooms and , um, really tried it out to make sure that it was a good lesson and are all there , they’re all good lessons and that it really had the point come across , um, that we are meaningful in that, in that lesson. So I think the biggest thing was creativity, trial and error, lots of debugging, and , um, really figuring out what the best option is for the curriculum.
Jonathan Wahl: 12:21
Robin, the curriculum is available@codejumper.com, but for people who haven’t gone through them yet, can you kind of walk me through what a typical lesson might look like for parents or teachers?
Robin Lowell: 12:33
Absolutely. So if we’re looking at a lesson that they’re all set up at very similar format , so that way it’s easy to kind of get that flow and that rhythm of the lesson , um, the lessons themselves. Um , again, we want to have this really inclusive experience for not only the students, but the teachers cause a lot of the teachers and parents will be , um , learning right along with their students and their child. So we wanted to make the lesson so you can just dive in and have everything you need right there , um , on, in the lesson plan. So each lesson has objectives. We , um, put in resources such as , uh , tutorial videos and , um, our or other outside resources, key vocabulary. So we have our key vocabulary words and also have them defined in a way that is , um, not too techie so that , um , anyone can really digest it and understand what we are, what we’re talking about. And then, so for the flow for the lessons themselves, we start every lesson off with an unplugged activity. So thinking about this, so we’re starting out and thinking about a computer, so computers are tools for information. So then we have a lesson that doesn’t use code jumper that doesn’t use technology, but uses a paper and pencils or, or, or a braille writer, or even your own body. They kind of learn these concepts before you go in and dive into them in coach jumper. So what’s great about this is these can be used , um, in, in many different ways as part of the greater lesson as a standalone , um, opportunity to just learn more about the computing and coding and computer science. So then the next level of the lesson is really that guided activity. So we have a lesson that introduces like in the beginning, it’s introducing coach itself, but all these concepts around coding. So for like the first one code jumper , um , the first code jumper lesson, our guided activity is input and output. So we have our vocabulary, we have a list of the materials you’re going to need, you know, which code jumper pods, or if there’s other , um, materials such as the computer science journal and then all the instructions, they’re exactly what you need to do step by step of how to work through the lesson and how to set up the program . So there’s pictures and explanations and captions of which pods to use and how to connect them to the hub and what , um, the , uh, the app will look like. So what the code actually looks like. So after we go through that guided lesson, where that, where the teachers are really doing more , um, the instruction and more , um , handholding through the lesson to kind of get those concepts, we have the opportunity for exploration. So these are opportunities where we have a similar vocabulary, if not the same, we have all of our materials, but the students are really going through and , um , working on the projects independently. So understanding what they’re doing, and I’m having an opportunity to show their knowledge , um, when with code jumper , uh , when you take the program apart, it does not save. So a lot of these lessons will, all of these lessons have opportunities for students to write or explain or show in their computer science journal , uh, what they learned in the lesson. So we can really collect that data about, about their learning and knowledge. And the computer science journal is not really a journal like a paper journal. It can be, but these are really concepts that , um, students can write in whatever mode they want, if they’re using a computer or if they’re using a braille note or if they’re using pen and paper . So there’s a lot of opportunities for students to really collect their knowledge in one place and go back into, refer to it. And at the end of every lesson, we have , um , standards and our check for understanding. So there’s always opportunity for the teachers to , and family sick connect with the learning and seat . Does my student understand what’s going on? And so there’s a lot of great resources in here. Start to finish in a very , um , user-friendly easily digested way for teachers and parents to learn about the basics of coding using code jumper.
Jonathan Wahl: 16:57
I want to talk about that easily digestible way, because I’ve talked with both teachers and parents who get so excited about code jumper, but then they get, I can see the nervousness and they say things like, you know, this is awesome, but I’m not a computer science teacher. I just don’t know if I can teach coding. What is your message to them? Can they teach code jumper? Can they work with their students or with their children with Code Jumper?
Robin Lowell: 17:21
Absolutely. So one of the things I love about Code Jumper is if we think about it, you know, coding programs are not always accessible for all of our students with visual impairments. And so we see can adapt them and modify them. And , but it’s not always just, right. So with Code Jumper, it’s really this idea from the beginning, yes, I can code, but that doesn’t only apply to our students and our, it applies to the parents and the teachers because they also need to be modeling that idea of I can code. And if they’re willing to put the in and really think about, Mmm , they’re going to pass that along to their students. And what’s really great about the code jumper curriculum is it is broken down into those steps of first, you do this and then you do this next. So it’s a step by step process that , um, the, the teacher, the instructor has the opportunity to learn, right , a long with your students. Cause you can read through the lesson and be able to teach that concept right away. You don’t have to go out and learn a bunch of super fancy computer science words or technology. Everything is right there and it’s really easy to break down each step and , um , figure out what you need to do. Step one, this is what you need to do. Step two Robin, you spent many years in the classroom working with students with visual impairments. Why is code jumper so important? There are actually a lot of reasons why code jumper is so important, but to me, the most re the most, the biggest reason , um , that code jumper is so important is we are telling our kids that yes, you can. From the earliest of ages, we have, I worked with students in kindergarten and using Code Jumper where they can dive in and we’re not having to modify. We’re not having to adapt. We’re not having to say you can do part of this. They are fully immersed in the experience alongside their peers. So everyone in the classroom has the same experience with coach jumper. So what we’re telling our kids is yes, you can, and you will be able to continue to cause they can move from code jumper to the tech space, coding languages. And then there’s a , not a lot of undo , meaning there’s not a lot of doing well, you couldn’t do the texts, the block based coding, but now you can’t, but there’s that whole , um , thought process process of, well, I couldn’t before. Why can’t I now? And so the more opportunities we have to create inclusive experiences for our kids, where they can work alongside their peers and say, I’m just as able as my friend, the better and code jumper is one of those opportunities to , um, really experienced that I have worked with , um , a lot of high schoolers with a lot of technology. And , um, I had a student who is now in grad school, reach out to me and say, thank you, thank you for teaching me the technology in high school. So now when everybody around me is panicking, I know what to do. So we’re giving our students the opportunity. Not only to say yes, I can and I’m going to, but we’re giving them those advocacy skills to be able to say, I know I can’t, and this is what I need.
Jonathan Wahl: 21:02
Thanks Robin . I know all of us at APH have been just so excited and we’ve just really enjoyed getting to work with you on this project. We appreciate everything you’ve done and we’re excited to see code jumper, continuing to change lives in the future.
Robin Lowell: 21:18
Thank you. Yes. This has been such an amazing experience. Not only, you know, from the concept of code jumper, only seeing the prototypes and then getting to take that and give it to a student for the first time they’ve experienced coding and those light bulbs going, Oh, you mean an algorithm is a list of steps to complete a task. Oh yes, we have to debug. So yet this opportunity that I have had with APH to really dive into code jumper has , um, not only , um, giving me more experience with coding with students, but has really broadened my, my expectation of what we can ask of our kids. This shows that we can have coding with our five and six year olds or seven year olds, and that they do have the opportunity to, wow, this was everything.
Jonathan Wahl: 22:13
I think that they can do exciting things for the future. Thanks Robin.
Robin Lowell: 22:17
Thank you.
Jonathan Wahl: 22:20
If you want to learn more about code jumper, just head over to codejumper.com. You’ll find videos, articles , the curriculum and more. That’s it for today. Thanks for listening and be sure to look for ways you can be a change maker this week.
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Larry Skutchan: 0:01
I think the real need is sort of two parts. One is an affordable price and the second one, is a very comfortable way to input braille and have a full 40 cells.
Jack Fox: 0:14
Welcome to change makers, a podcast from APH . We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:28
Welcome back to Change Makers. My name is Jonathan Wahl. Today we’ll be talking all about the Mantis Q40 a refreshable braille device with 40 cells of braille and a full QWERTY keyboard. We’re going to have a great time on today’s episode. We’ll talk with Greg Stilson about the specs behind the mantis.
Greg Stilson: 0:46
This is a phenomenal tool for a lot of the STEM subjects for learning how to computer program and things like that.
Jonathan Wahl: 0:53
Joe Hodge will be joining us talking about how easy the mantis has made his work from home experience.
Joe Hodge: 0:58
Now I get to enjoy life in a Lazy Boy.
Jonathan Wahl: 1:01
And we’ll be talking with Matt Poppe about using live mantises to create promotional content for the Mantis.
Matt Poppe: 1:08
At one point a couple of weeks ago, I think Betty might’ve molted but I could not find her shed exoskeleton and so I’m thinking maybe she shedded.
Jonathan Wahl: 1:17
But before we get to the new APH pets , we first want to talk with today’s Change Maker Larry Skutchan. Larry is the Director of Technology Product Research at APH and he’s behind many of the tech innovations that APH has produced over the years. While a lot of people have been instrumental in this project, including our friends at Humanware , this is a project that started with Larry, so it’s only fitting that he starts us off today. Larry, thanks for being here .
Larry Skutchan: 1:43
Well, thank you for having me on Jonathan . It’s always a pleasure.
Jonathan Wahl: 1:48
Larry, people have been really excited about the Mantis, a device that has built in Bluetooth QWERTY keyboard and also 40 cells have refreshable braille. When you came up with the idea for this device, what kind of problem were you trying to solve?
Larry Skutchan: 2:02
Really, we were trying to solve several problems at once and the main one was to be able to have a comfortable input method that always had a braille display with it. So really your QWERTY keyboard with the braille display attached , and that way you know, you can walk from computer to computer. Um, uh , another problem that we were trying to solve is, you know, nowadays we’re all walking around with phone in our pocket or purse, a tablet, maybe two or three computers and, the Mantis will connect to all of them. It’s a simple command to switch from one to the other. So you’ve always got the same keyboard, same braille display. And it’s nice because you can just walk up to any computer anywhere. And actually the mantis like a regular keyboard. It’s not until you run the screenwriter that the braille display portion of it comes into action. So the idea is really to have an input method where you can type anything. Mainly , you know, I think most of us will agree that typing on QWERTY is probably faster than braille , although a lot of us love braille input and braille input is so much better in terms of space. But when you’ve got um, you know, 40 cells, braille space is already out the window so to speak. But so yeah, the idea was to have something that you could enter technical documents, programming, anything you wanted to just as quick input, possibly couldn’t get a good , comfortable, comfortable with . So like I said , we’re trying to solve a few problems all at once.
Jonathan Wahl: 3:57
Right. And it really looks like you have. Larry, a lot of great new features come with the mantis. What do you think the need is for this product?
Larry Skutchan: 4:06
Well , um , you know, if you look through the history of braille display, there has been some with QWERTY keyboards , but they’ve always been very expensive and you know, they were earlier on in the history and they weren’t able to connect to multiple devices . So I think the real need is sort of two part . One is an affordable price. And the second one is like we were saying in the first question, I’m very comfortable way to input braille and have a , a full 40 cell . Um, you know, it’s so easy now to see 20 or 32 cells, but um, and nobody knows what the ideal number is. It really depends on , on you and what kind of applications you put it to . But to have a 40 cell line is a luxury, you know, especially at this price point. That’s the need where we’re really filling is a affordable, full first class. Um, sort of device with easy input , uh , braille and it’s got , you know, local applications too. And Jonathan , I think this is what’s significant cause we’re not, we’re not trying to be all things to all people. We’ve limited the onboard applications to simple things like reading books or taking notes. So if you want to browse the internet or do email, you just connect it to right phone or to your computer. And that way the , the big guys, so to speak and take care of all the advances, you know, the web is changing. So fast, we get four or five new browsers a year, browser versions a year. Web pages are constantly changing and there’s no way of a small company like us or work and possibly keep up with that. So we shift that burden over to the big guys and then use the mainstream technology for what it’s best at. Used our specialized technology for what it’s best at. So well we expect really that you’ll take your mantis through several generations of computers or phones and you know there’s no need to replace it because there’s, well nothing is a big word or I’ll say nothing to go obsolete. That’s important though because so much technology doesn’t last long. So if it can stand the test of time as other things develop that that saves money is important for people not to be keep on switching. So I love that aspect of it. You know, when APH is working on any product, we’re always looking at what does this mean for the end user? How is it going to help people? What do you hope the impact in people’s , both just their general life or you know , even their workflow, what are you hoping the impact will be for them? And I hope the impact will be, they’ll have braille whenever they need it and whenever they want it. Uh , so important. Um , you can get by with speech sentences. Sure. But when you’ve got braille, it’s a whole nother dimension. Don’t, don’t even try to multitask with speech in a meeting and something else going on. When you’ve got braille there, you know, you can, you can participate in just as well as anybody and you know, as far as formatting and reading, you know, just to be able to have braille with you on every device no matter what you’re doing is huge. Huge. And so if we can accomplish that, I think there’s not much more we can ask for.
Jonathan Wahl: 7:39
Now Larry, I know this isn’t your first product you’ve developed. If you say Larry Skutchan in our field, people know who you are and they know you’ve, you’ve come up with a lot of great ideas and worked with your team to bring them to market. But for this and just in general, what is it like for you to have an idea and then see it become final and then a life changing product that’s being sold out there?
Larry Skutchan: 8:02
Well , you can imagine the gratification, Jonathan . It’s a , and you know, you work in at APH, you and you look , you’re getting a taste of it now too . People appreciate the kinds of products we put out in . It makes you very proud that you’re able to change somebody’s life. It really does. That’s, that’s really all I can say.
Jonathan Wahl: 8:23
Well, thanks so much Larry. I really appreciate the work you do and for taking the time to talk with me today. And um , it’s just exciting as we, as we get this product out on the market and it’ll be fun to see everyone’s feedback once they get to start using it .
Larry Skutchan: 8:36
Thank you John. Pleasure to talk with you.
Jonathan Wahl: 8:39
From concept to final product, the much anticipated mantis is now for sale at aph.org and we want to talk about what makes the product tick. So to tell us everything we need to know about the Mantis, Greg Stilson, head of global innovation at APH has joined me. Greg, thanks for being here.
Greg Stilson: 9:00
Hey, thanks for having me on.
Jonathan Wahl: 9:02
So Greg , just for people who don’t know much about what the Mantis is can you describe to me this product?
Greg Stilson: 9:09
Yeah, absolutely. So the mantis is a first of its kind. Um, it is an all-in-one QWERTY keyboard with an embedded , uh , 40 cell braille display with cursor router keys attached to it. I always, you know, a lot of people call it a braille display first. I actually refer to this as almost a, it’s a Bluetooth keyboard with an embedded braille display.
Jonathan Wahl: 9:28
So let’s talk a little bit about specs. What’s inside the Matnis? It’s more than just the display you see and feel.
Greg Stilson: 9:36
You got it. Yep . So this, when most people think of a refreshable braille display, they think of it as something that must be connected to other tools to be really productive. This, this does all that. Um, but it does it a little differently. And then in addition, it has some built in intelligence that makes it a really powerful , uh, productivity tool without being connected to anything else. And so I’ll start with , um, what’s different about it when it’s connected to other tools? So first off, when it’s connected to other tools , um, it’s not using your traditional , uh , Bluetooth connection that , uh, is used for other braille displays. When you connect the mantas to other devices, it’s connecting with the standard human interface device hid protocol that a regular Bluetooth keyboard or USB keyboard would connect to it. But what makes that really awesome is that it works in conjunction with your screen readers on various devices. But it also, if you turn off your screen reader can still control the device as if you’re using a regular Bluetooth keyboard. Whereas other devices like other refresh will braille displays. If you turn off the screen reader, they’re rendered generally , um, you know, useless at that point. So that’s when you’re connected to other tools. By itself though, it has a suite of applications inside of it that if you’re not connected and using it, say in a classroom or in a meeting or at home, you don’t have to be connected to other devices to be productive with it. So it has a basic editor inside of it. It can read a Microsoft word files, it can read text files. Um, and you can edit. When you create a document, you create a text file. Um, and it has, you know, it doesn’t, it’s , it’s not a full word processor, it’s a note taker. Um, so you’re able to take your regular notes. You can do find commands to look for certain things in documents and things like that. Um, it does have a USB port host port on the side , so you can save your files to a thumb drive or you can read files from a thumb drive. It also has an SD card slot that takes , uh , SD cards up to 64 gigabytes and it’s charged with, with a USBC connection. And that’s , that’s really important because the USBC, if for those of you who aren’t familiar with it, it’s the connection that you can plug in. Either way, you can flip it upside down, right, set up and it doesn’t matter. So there’s as somebody who has broken many of the prongs of the micro USB ports, I’m a big fan of the USBC connector . So in addition to the editor , um , there’s a really powerful book reader. Uh, it’s a library application that in the device we have a built in wifi connection. So on top of the Bluetooth connection , we have a wifi connection and you’re able to , uh , use the wifi connection to log in to bookshare.org with your Bookshare username and password and be able to on the fly, download your books directly to the device and read them. And what’s really cool about that is that you can download them using your preferred Bookshare setting . So if you prefer, if you’re the person who likes to download in Daisy format so that you can nap page to page, chapter to chapter, things like that, you can do that right on the device. So, especially if you’re just reading for leisure or things like that, you can, you can read directly on this device. Um , and then if you are an NFP newsline subscriber as well , uh, you can log in so that service with your credentials and have your newspapers and publications sent to you , uh , directly on this tool as well. In addition to the library application, we have a basic calculator. So if you need to do some quick calculations on this , um, you’re , you can, you can do that. Uh, and then there’s a clock and a file manager as well. And that file manager. I , I, I just want to mention from a student perspective, I’m a big fan of teaching file management and organization techniques. You know, sighted kids , uh, have file folders and things in their backpack and because of the use of digital formats for , for students who are blind and low vision , um, it’s really important to build those same , uh, organizational skills, but do it in a digital format in that, in that file manager. So you can create folders, organize files, add and remove files to , uh, to different folders. And such.
Jonathan Wahl: 13:44
Awesome. And you know, all of our braille devices are important, but this one’s unique. So what does make this device so important in our market?
Greg Stilson: 13:55
That’s a great question. Um, traditionally and so as the innovation here, I really, one of the things I really ask all the time when we’re talking about new products is why, why are we building them? What’s the need that we’re looking to solve here? The big need that we heard from teachers of the visually impaired. And we heard from professionals that when when typing on a QWERTY keyboard or learning how to type an a QWERTY keyboard , oftentimes the student was coming from a , a background of using a six key entry device, like a traditional braille note taker using a refreshable braille display with six key entry. And they were often apprehensive to move to a QWERTY keyboard. And part of the reason for their apprehension was that their comfort device, the device that they were comfortable with, the six key entry braille device, it’s often was getting left in a backpack or a book bag or something like that and not coming with them, the computer. Even though these devices could technically connect to a computer and provide refreshable braille. So this device is an all-in-one QWERTY keyboard and you can do all, you can use even for example, our APH typer online app, a web application that we were , we’re releasing now. Um, you can use the mantis to learn too , learn how to type , but you can do that in conjunction with reading all of the voice feedback and braille and having all the content in braille with it the same at the same time. And from a , you know, being a technology person myself and heavy, having gone through computer programming classes, this is a phenomenal tool for a lot of the STEM subjects for , for learning how to computer program and things like that. Having that refreshable braille right beneath the QWERTY keyboard and being able to, to interface with that, be able to curse or route directly to an error in your syntax and things like that and do it all with a traditional QWERTY keyboard is really powerful.
Jonathan Wahl: 15:52
At APH, we’ve been adding a lot of braille devices to our product line. We know this is very important to , we kind of are trying to have something for everyone who is the Mantis for who, what’s the target market? Who do we think will benefit from it?
Greg Stilson: 16:06
You know, I know it’s going to sound cheesy, but I personally believe it’s for anybody. Yeah. I think it’s really important as a blind person myself to have the skills of knowing six key braille entry and Cordy keyboard entry. That’s the more tools that we have in our toolbox, the better. Right? And so , um, I sort of see this as a progression tool that as the student starts out their learning skill , six key entry really as a, as a a companion to their literacy, right? The learning, learning braille literacy. So you’re learning how to read, how to write those contractions in six key entry. That’s really impactful. Um, but then as you do move up and you students today are learning to use high-tech computer programs. I , my, my godson for example, is eight and he’s already doing PowerPoint presentations right? For, for his classes. And so you need to learn how to type at younger and younger ages. And so I see this as a progression tool that goes beyond a six key braille entry device. So students who are learning to type and eventually getting into, you know , higher ed classes and things like that. In my view, this is sort of that, not to use a Lord of the Rings reference, but it’s the one keyboard to rule them all kind of thing, right? Like this is something that can go from device to device, from classroom to classroom, and it will connect to virtually any tool that you’re going to connect to. Um, and, and really all the move with you all the way through your higher education and into your , uh, into your workplace as well. And that’s, that’s another piece of the puzzle. Right?
Jonathan Wahl: 17:38
Thanks so much Greg. I am a Lord of the rings fan, so I’m already writing. You know, what that new slogan is: One device to rule them all and in the darkness find the errors. Perfect. We should be professional marketers or something.
Greg Stilson: 17:55
Great. There you go. I love it.
Jonathan Wahl: 17:56
All right, well I really appreciate it and I’m just excited for people to start getting this in the mail and hearing how it’s changing their lives and how they’re using it in their workplace and at school .
Greg Stilson: 18:07
Definitely
Jonathan Wahl: 18:12
Coming up, we are going to talk about our new office mascots, the Mantises, Betty and Alfred. But first I want to talk to a braille user about how the mantis is going to be helpful in day to day life. To do that, I reached out to Joe Hodge, a quality assurance analyst for APH. He had a chance to use the mantis for some time. Joe, thanks for being here.
Joe Hodge: 18:32
Thanks for having me Jonathan.
Jonathan Wahl: 18:33
So Joe, you’ve used the mantis, you’ve tested it and you’ve really said it . It’s been such a great tool. Tell me a little bit about how it’s beneficial in your day to day work.
Joe Hodge: 18:44
So a few things I use the for consistently is I will , um, so it has an NFB capability for NSB newsline. What I’ll do is before leaving my house, I will download the paper on my wifi and then when I get on the bus, this is of course pre COVID 19 . But when I get on the bus, I would read the newspaper and uh , get to work and then go to my desk and start work. I could just plug it into my windows keyboard and then start using it with jaws or NVDA or voiceover, whichever. Uh, I , I test a lot of different operating systems and with , uh , with different computers. So the fact that I can just plug this in through USBC or use Bluetooth really makes it very convenient to go between different , um , systems.
Jonathan Wahl: 19:30
So the great thing about this then is just the ease of use, having it all together.
Joe Hodge: 19:35
Yes. So , um , like now that we’re all kind of working from home, I actually have it Bluetooth to my Mac. I have of course Bluetooth headphones and I can sit way away from my computer, read the braille display , listen to the speech. And it’s amazing. I was , um, I hadn’t really thought of it when I first started working at home and I kind of got a bad back sitting on a wood chair and then I was like, Oh wait, I’m going to do this. And uh, cause I didn’t have the mantis at first. And then I got , uh , my , my boss brought me the Mantis , uh, to my house and now I get to enjoy life in the lazy boy. So it’s, it’s really, it really has great. Um, the, the product is so light as well. So I have , um, a Mac book pro for example. And I have this , uh, there roughly the same size and, and sort of the same weight. It kind of feels like they’re, you know, they’re not much difference. And in bulkiness. So what I do now is I carry this, the , the Mantis and put it in my backpack and I actually take it places over the MacBook because I can connect right to my , my phone where I can connect to local mode, write notes quickly , um, and also read the newspaper . So I , I really love it. It kind of has fit into my life more than I thought. You know, when , when we first started designing this product, I was kinda like, okay, it’s a QWERTY keyboard, I’m g oing t o leave it on my desk all the time. U h, but I actually f ind myself taking it more and more with me, u m, and using it, you know, as I travel.
Jonathan Wahl: 21:09
You said enjoy life from your lazy boy. And I love that. That’s what , that’s what we should all be doing right now if we’re working from home.
Joe Hodge: 21:17
Exactly.
Jonathan Wahl: 21:19
Joe, I know before you came to work at APH you worked in an office job and you would mention that having something like the mantis could have been really beneficial. Can you walk me through for someone working in an office how this could really just be beneficial for their workflow?
Joe Hodge: 21:34
Yes. So I worked in an insurance company where we had um, I had a computer with jaws and I had a, another the braille display, 40 cell braille display. So you had the keyboard and then I had to position the braille display to where I thought it was most comfortable. So I usually put it on the left hand side. So if someone calls in, I have jaws in one year , the person in another ear, and then I’m reading braille off to the left. So you know, they’re reading their phone number, I’m reading it back a braille, just verifying. Uh, and then I have to move my hands back over to the right to the court . So it was a lot of constant movement. You know, just you’re , you’re turning your body, you’re , you’re sort of moving. And I don’t wanna say unnatural ways, but just more so than you’d probably need to.
Speaker 6: 22:20
The Mantis is great because you get the QWERTY input. Uh, so you’re, you know, you can keep your hands in the normal typing position and then when you need to read the braille, you just dropped down and read the braille display and then you can go back up to typing. So I think it’s less interruption and less thinking about it. Cause sometimes, you know, the braille display was a different, it’s a , it was a different device. So if you bump it, it’s going to move out of place. And then you have to fiddle with it to get it back in place where you had it and then, then it’s never quite right. Cause I’m, you know, a little OCD I guess. But um, it’s, it’s, it’s just, you know, having one device now for this, for everything is, has really made a world of difference. And I kind of wish I could have , I don’t want to do my old job again, but I wish I could , uh, you know, experience the , the old job with the Mantis cause I think it would make it more desirable.
Jonathan Wahl: 23:09
Thanks Joe. It’s so good just to hear what the application , um , from, from an end user and knowing that it’s going to continue to help other people out there with their workflows and their, their jobs . So thank you so much for taking the time to talk with me and it’s, it’ll be exciting to see as we all use this product more.
Joe Hodge: 23:26
Definitely. Thank you. Jonathan.
Jonathan Wahl: 23:27
Last stop on today’s podcast: We’re talking all about the new office pets for the communications team at APH. When we named the Mantis, we came up with this idea that we wanted to have a live Mantis for an introduction video on social media, one where a mantis crawls across the keyboard. Here’s the audio from our final video :
Voice Over: 23:50
Here we have a variety of the Mantodea more commonly known as the praying mantis watch as this wise and fearless creature walks alone. But what do we have here? It’s come across a numerous species of mantis, the mantis Q4 from APH with a full QWERTY keyboard and 40 cell braille display. What a majestic creature.
Jonathan Wahl: 24:19
So to make this happen, we ordered two live mantises on Amazon. Did you know you could buy a live Mantis on Amazon? Well you can, and we did. I want to assure you that Betty and Alfred were and are well taken care of. I’ve asked Matt Pope, a graphic designer at APH and now our mantis caretaker to join us on the podcast. Matt, can you confirm that no mantises were harmed in the making of the video and this podcast?
Matt Poppe: 24:45
Yes. Yes they are. They’re still doing fine. They’ve got a new digs and plenty of flies to eat. So
Jonathan Wahl: 24:53
What does it take to, take care of those mantises there?
Matt Poppe: 24:57
Not much. They’re , they’re very independent and uh, they’ve each got a little , uh , fishbowl tank, but I put them in with some sticks and some leaves and a little , uh , bottle cap full of fruit fly food. And then I’ve dropped some fruit, flies in each container and the fruit flies live off the food and lay eggs in it. And so the mantis is always have a continuous supply of flies. And usually they just sit around and wait for a fly to wander too close and then they snap it up.
Jonathan Wahl: 25:34
The leisurely life.
Matt Poppe: 25:35
Yup.
Jonathan Wahl: 25:37
This is to my knowledge, the very first time APH has used live , um, you know creatures for a , campaign. What went through your head when you first found out we were purchasing live mantises.
Matt Poppe: 25:50
I said okay. And then I don’t know how, but somehow I was, I was volunteered, to be the mantis person. So I have two mantis children.
Jonathan Wahl: 26:02
You’re a proud father and a good parent. We appreciate it. So, you know, for this video, the mantis is one at a time. You know, we had an understudy , um, are crawling across this braille device. What did it take to get them to move and , and not just you know fly , fly off.
Matt Poppe: 26:22
Fortunately the mantises , before they reach adulthood, they’re not very, very fast. They , they’re not very crazy. They, they’re ambush predators. So they basically just sit around and wait for something to wander along and then they eat it. So it wasn’t really hard to keep them from running away. Um, it was hard to get them moving though. Um, we basically tried the basics of just poking and prodding them and you know, trying to get them to walk and then they’d stop and be like, what are you doing? Are you poking me? Uh, eventually we found that using flies as bait was pretty effective. So we , uh , brought a few flies in and positioned them where we wanted the mantis to walk to and then the mantis would see the fly and get curious and start wandering in that direction. And that was how we got some of the, the shots of the mantis crawling over the , uh, over the, over the Mantis , uh , keyboard. Uh, it was pretty much that simple. We didn’t really have to do much. We just , it was mostly just took patience and, and watching and waiting to see what the medicines would do and keeping the cameras trained on them. So.
Jonathan Wahl: 27:31
It was a pretty, pretty fun day at work. Well, I appreciate it, Matt. I hope that Alfred and Betty continued to do well and keep us updated on their, their health.
Matt Poppe: 27:42
They’re doing pretty good here.
Jonathan Wahl: 27:45
If you would like to learn more about the Mantis Q40 or purchase your own, I’ve included the URL in the podcast show notes. That’s it for today’s episode of Change Makers. Be sure to look for ways you can be a change maker this week.
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Jack Fox (Intro): 0:01
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:15
Welcome back to change makers, a podcast from American printing house. My name is Jonathan Wall. After more than a month of working from home, some APA staff has returned to work in the building. We’re focusing on critical staff in the factory that are needed to make important products for students for right now, any APH staff that can work from home are going to continue to do so. I know the pandemic has changed how we’ve had to interact with you. So today we’re going to take some time to update you on. What’s been happening to APH. We’ll highlight some of the learning opportunities that we’ll be continuing into the summer. And if you hang on until the end, we’ll have a special message just for our 2020 seniors to start. We couldn’t send any employees back to work without a lot of preparation. Joining me today is Arthur Vaughn , chief quality and safety officer at APH. Arthur, thanks for being on the podcast.
Arthur Vaughn: 1:07
No problem. Glad to be here,
Jonathan Wahl: 1:09
Arthur. I know you had to go through so much to get APH ready to allow some employees to come back into the building. Walk me through a few of the things you’ve had to do just to make sure we’re following guidelines and keeping all of our employees.
Arthur Vaughn: 1:23
Well, I’d say first of all, we had to create a team because there’s so many different things that had to take place. And we had to have a group of people working on different aspects of it. Uh, one of the first things we had to do is to make sure that we had supplies. We had adequate PPE, which is the face mask , the gloves face shields, and those sort of items. And, and, you know, as anybody who’s been involved with this knows a lot of these things were really difficult to get, especially early on. But fortunately, we had a great folks in our purchasing department. Um , Scott and Kathy were able to go out and procure a lot of these items for us and , uh , to get those up in house . So we’d have them ready come day one, we had to order things , um, such as cleaning items, you know, sanitizing items we’d to make sure that we had plenty of hand sanitizer, but also the, the cleaning items to be able to clean up and sanitize the area. So there was a lot of PPE that had to be procured and , uh , Rodney who’s over housekeeping. He was instrumental in getting a lot of these items on board. That’s kind of the basics. Uh , so the basic supplies that you have to have, but then we had to start looking at individual areas because we had to create separation. You know, you’re looking for your social distance in which is six feet of between employees. There’s a lot of processes that you can’t necessarily get six feet. So we had to look at these particular operations create like shields barriers, plexiglass barriers between employees and a lot of our operations. You know, a lot of what we do here at APH is kind of low quantity. We may build 50 kits on and then turn around and build 200 or something different. So it’s constantly changing. It’s constantly evolving. So these shields had to be made where they could be moved so we can move in and out of process as quickly. So we can create that barrier between employees or cafeteria. We had to create a one way in one way out for a cafeteria. We had to have some shields in there. Uh , we had to do the same thing, a translation, you know, translation. We’ve got to watch people that work in there and we had to create some separation. So we moved some cubicles around kind of a recreated that situation put in a one way in one way out , uh, to enable separation there. But fortunately, something we’ve been able to do. And it’s what everybody’s trying to do is create , uh, as much work from home as possible. You know, what better separation can you have than , than have the ability to have people doing their job home? So you don’t have them all congregated here at one place. And unfortunately, fortunately, we’ve had a lot of people to be able to accommodate that, done some wonderful, wonderful work and getting that set up. And we’re trying to even look further, we’re looking at some of our translators and some of our periphery and teams being able to have this work done from home just to create that even better separation. So it’s a multi faceted approach that we’ve had to take. Uh , just yesterday we got in , uh , to , um, really sophisticated camera systems and this works off infrared. So we were , we’re now able to take our employee’s temperature, the instant that they walk in the doors . There’s no more walk up to them and using the touchless scanners. And , uh , um, now at a distance we’re able to take our employees , temperatures and instantly have that information is a constantly evolving and , uh , something we’re monitoring daily to see the changes , uh, to see how we have to modify our processes. And , uh , uh, it’s something we have to stay on top of.
Jonathan Wahl: 4:56
Thanks so much, Arthur. I know you’re known as the safety guy around work and you’re, you’re busier now than ever, but we all appreciate the work you’re doing. And uh , all right , buddy. I appreciate that. And take care while working from home, our customer service team has worked really hard to ensure you could still get the products you need. Joining me today for an update is Jim Kriner our customer service director, Jim, thanks for joining me. Hey
Jim Kreiner: 5:23
Jonathan, it’s great to talk to you again,
Jonathan Wahl: 5:25
You know, your customer service team has been very busy and diligent working from home to ensure people could still get the tools they need for their students throughout all of this work from home and learn from home that we’ve all been doing. How have you all been able to, to meet those needs from
Jim Kreiner: 5:40
Home? Well, I think like a lot of folks we’ve been adjusting to work from home and it’s taken a little creativity and have had a few bumps along the way, but I’m really excited to share that we are still entering and processing orders and supporting customers just as we were, if we were working in the office and even more excited to say that we are staffing our phone lunch from 8:00 AM to 8:00 PM. Now
Jonathan Wahl: 6:05
That’s excellent news. Um, you know, now the APA is moving some employees back to the building. Is there going to be any kind of change in customer care at all?
Jim Kreiner: 6:14
Actually the one good news to report is that we are planning to resume shipping. So if you were one of the customers whose orders were held , um, know that we’ll be contacting you to locate shipping those orders. And then as of next Monday, the 18th, all new orders will be shipped as well. So we are working hard to get product out the door and to students. So please call us or email or fax those who carry a pigeon and place that order with
Jonathan Wahl: 6:41
Everything going on. You know, information is changing a lot. It can be tough to keep track of everything, you know, related to APH or not just just life, but for people who have questions or need help , or just want to double check on an order, what’s the best way to do that?
Jim Kreiner: 6:56
Absolutely. The best way to reach us is always via email at C S N a P H dot O R G . But you can also give us a call at +1 800-223-1839. And like I said, we’re excited because , uh, we have folks from 8:00 AM to 8:00 PM who can take those calls, assist you with your order. And , uh, and now with our shipping and production team is back . We’re really looking forward to moving into a summer and getting those orders taken care of.
Jonathan Wahl: 7:23
Thanks so much, Jim. I look forward to when we can all be in the office again together.
Jim Kreiner: 7:27
Thanks Jonathan . I’m looking forward to working with you again here real soon
Jonathan Wahl: 7:32
On our very first podcast, we told you about the virtual Excel academy and while we’ve been blown away with how many hundreds of people have attended the virtual learning events. Now we know many summer learning opportunities may not be available this year. So APH has decided to offer virtual Excel summer camps to tell us more Leander . Lot . The director of national outreach services is joining the podcast. Thanks for being here, Leanne ,
Leanne Grillot: 7:59
Thank you for having me. I’m really excited to be here,
Jonathan Wahl: 8:02
Leanne. The Excel academy had just been going so well. There’ve been so many people attending. Tell me a little bit more about just how everything has been these last few weeks.
Leanne Grillot: 8:13
It was a brainchild to just provide something like Mr. Rogers neighborhood. You could always know that there was going to be something possible for you as a kid to go every week , day , day. And so that was really the idea. And we really were expecting, oh, 25, maybe 30 students being able to join us during this time. And what we found is we have probably 50 students that come and join us that we can tell. And many adults from parents , uh , college students, teachers since the visually impaired orientation and mobility instructors, and then even general education teachers joining us, witnessing a classroom environment virtually, which has really been this fabulous part of our community coming together and doing something specifically for students. That was what has been really unique about this situation is it really is for students, a majority of the webinars or activities that you’re seeing live right now are meant for adults, which was fine, but we knew as soon as the virus hit, we were worried about what students would have. As teachers we’re really kind of gathering what they were going to do. That’s what we wanted to do is provide something for students to do during that time it’s happened. They are , they are coming and joining. We have over 2000 people who have registered to get information, to know what’s happening each weekday to see if it’s an activity that they would like to join in. And so that has really been this great part. Another wonderful part is it is involving people from all over, not just all over America, we are making sure we’re reaching our , uh , outlying territories, Puerto Rico, American Samoas , but we’re also getting an international reach. We have the Russian Federation, Ireland, all sorts of places.
Jonathan Wahl: 10:13
And what has the feedback been on the different classes and activities.
Leanne Grillot: 10:17
It’s been really interesting. We don’t get as much feedback specifically from the students after the lessons. We hear lots from them inside because they’re really participating and giving feedback in the chat and communicating after the fact, we hear a lot more from teachers and parents, things such as, I didn’t know that they could do these things or wow, you can use these tools this way, or, oh my gosh, I have so many tools now in my own toolbox to be able to work with my own students or my student is really excited about this lesson coming up. So we’re hearing those types of things. Yeah , I understand.
Jonathan Wahl: 10:57
It’s been going so well. I know the school year is wrapping up, but you have plans for a kind of a summer camp version. Can you tell our listeners a little bit more about that and how they can be involved?
Leanne Grillot: 11:07
Sure. We had built so many actual friendships almost with our students and our participants that we wanted to be able to extend it into the summer. This was really meant to the academy was really meant as this place to help people along through this time. And we know that summer is different. So we decided to treat it as different summer is a time to do something a little bit different. And we know that a majority of camps that our students are usually able to attend are closing or changing and how they’re going to work and , and , and provide this activity. So we wanted to join in and give people an opportunity to have a similar setup to the academy, the virtual environment you can join in. So we’re going to have a course similar to the academy, but on Tuesdays, Wednesdays and Thursdays at the same time, but age grouped . So that students have some similarity between them with the academy. It could be everywhere from a kindergarten or to a high school student joining in. So this will kind of be more targeted. And then also we’re asking teachers to provide five at home extension activities that go along with whatever theme the teachers have decided. So we’re working right now on hiring the teachers and we’ll be ready to go mid June.
Jonathan Wahl: 12:29
That’s great. And for anyone who’s interested in signing up, I will put a link to that information in the show notes. And only in this kind of orange is new for APH, all this online focused warning. Why is it important for us to keep offering it as an option for parents and families?
Leanne Grillot: 12:47
What’s really interesting is my title is national director of outreach services. And outreach is that activity of providing services to any population that might not otherwise have access to those services. And so really thinking about how do we provide access to people who we can’t reach. And so that again is what we’re talking about. Maybe rural America, there’s limited ability for students to interact sometimes even for our professionals to interact. And so this is a way to provide access to people wherever they are. And in some ways, even at whatever time they can,
Jonathan Wahl: 13:30
Thanks so much, Leanne , I appreciate everything you’ve been doing for our students.
Leanne Grillot: 13:32
Thank you for having me. This was great
Jonathan Wahl: 13:38
To wrap up our podcast this week. We want to take a moment to talk to the graduating class of 2020. Usually this time of the year is full of fun graduation parties and commencements, but COVID-19 has meant that’s not possible at APH. We are so proud of the many students with visual impairments who have used our products during their time as a student seniors. We want to end today’s podcast with a message just for you from Mike Hudson, the director of the museum at the American printing house for the blind. Mike, thanks for being on the podcast. Thank you, Jonathan Mike, a lot of high school seniors right now are having to celebrate from home and I know you’ve prepared a message for them. So I’m not going to slow you down. Why don’t you just go ahead and jump right in.
Micheal Hudson: 14:19
Sure. Thanks. I’m really excited to be able to talk to all of our seniors. It’s a big day. You know, it’s easy for sighted. People who know nothing about blindness to see you doing something ordinary, like reading a book or eating your lunch or making a phone call. And I think it’s a Marvel. They lacked the imagination perhaps to see that the way they do things might not be the only way to do things. And when somebody comes up with an alternative way, it amazes them. I’m you’ll have to live with that kind of reaction all your lives, but I’m not here today to praise you for being able to put on your pants this morning, we’re fine. The cafeteria area all by yourself, or even algebra and geometry. What I am here to praise you for is that you made it to this day in your life, your high school graduation. Now making it to your graduation doesn’t necessarily make you a hero. But your journey through high school filled with twists and turns was a hero’s journey. And as you begin the next phase of your own life, you will not need to be a genius or a hero either, but your journey is still a hero’s journey. Life for you is about to get very interesting in ways that some of you, maybe all of you have not considered. And I imagine that each of you have approached your graduation with mixed emotions in this country. I think we do a pretty good job with our students who are blind or visually impaired while they’re in primary and secondary school. After that, not so much. So you are going to have to learn to be your own best advocate. If you’re playing to go to college or vocational school, you will be responsible for finding your own accessible textbooks. No one will be responsible for teaching you how to get around the campus. That will be on you to arrange with an O and M specialist. And if you need adapted computers or other equipment, it will be on you to reach out to the right office at the state level to see what is available. There are many temptations out there. There will be no one to automatically correct you. When you make a mistake, you will have to show self-discipline for yourself. If you’re going to go to work right out of school, you will have to search the one ads , prepare a resume. Hey, send in your application, find an outfit that’s appropriate for the interview and convince the interviewer that you are the right person for the job. That’s a lot of details and you are responsible for all of them. And the truth is the system is tilted against you, just despite 190 years of education for the blind in the United States. Colleges and universities are still not quite sure what to do with you. You will have to convince each of them, one person at a time of your skills, your talents, and your abilities. Each of you on your own Odyssey, your own hero’s journey is almost a missionary for every other kid, with vision loss, who will follow you. You must learn to stand on your own and be your own best advocate. Your parents and family, your teachers, your mentors, and your friends have all been preparing you for this day for this moment. But this last step, as you walk across a virtual stage to accept your virtual diploma, this step is the first step of many. That must be taken alone. And for yourself, as you step out into the world, you’ll have decisions to make at every turn. You’ll have to decide between the easy way out and the road less travel . I salute you class of 2020. You made it. The next step will be hard, but heck if it was easy, anybody could do it. And I look forward to reading your story all the way to the end .
Jonathan Wahl: 18:47
Thank you so much, Mike, what a wonderful message for our seniors and from all of us that APH congratulations to the Class of 2020. And with that, we wrap up today’s episode until next time. Be sure to look for ways you can be a change maker.
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Amy Parker: 0:01
Maybe this time is a chance for some of those people who never get to go to our conferences. Never have tasted that, to be a part of something.
Jack Fox: 0:11
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:25
Welcome back to Change Makers, a podcast from American Printing House. My name is Jonathan Wahl. Off the top you heard from Amy Parker about looking for silver linings as conferences important to the work we do are all moving virtual. That’s today’s topic. How do we stay connected? Conferences are about a lot more than just attending sessions. They’re also where we learn about new products and where we partner with other companies to continue to push the boundaries of our field. Today we have three guests. Part of another round table discussion. Dr. Kirk Adams, president and CEO of AFB, a private nonprofit that uses research and evidence to effect system change that creates a world of no limits. Dr. Amy Parker an Assistant Professor and Coordinator at Portland State University where she is engaged in community development and nurturing, and Sergio Oliva, the Associate Vice President of National and Youth Programs at the Braille Institute. He oversees Cane Quest and the Braille Challenge.
: 1:27
Our moderator today is APH president Craig Meador and he’ll be leading today’s discussion. Craig , I’ll leave it to you.
Craig Meador: 1:33
Thank you. This is Dr. Craig Meador talking today about what happens when the world throws you a curve ball. Our field is this wonderful collaborative group of people that not only , uh , get along professionally very well, but actually like each other. And so what happens when a field that is so defined about by the conferences and the opportunity to touch base and the after hour happenings at conferences, which is so important to our or cultural lifeblood gets interrupted and we are forced to go to a new motive , virtual mode. What happens then? And can we continue to be successful not only with getting out material and instruction, but meeting those heart needs of our field. And so we’re going to talk about that today. All of you had some big events. Kirk, most recently the AFB leadership conference which moved to a virtual environment. But before that Amy , your Mobility Matters, moved to a virtual environment and I also heard Sergio, I know the Braille Institute, Braille Challenge this year, is going to be moving virtually as well. So tell me a little bit about that event and, what brought you to that decision? What were the steps you took, u h, to make sure that the event would still be relevant even though it was shifting to a new platform? So, u h, Amy, why don’t we start with you?
Amy Parker: 2:59
It was a tough decision even in the midst of all the data that was coming in and information that was coming in to move mobility matters over to an a fully online environment. We were having conversations, our team at Portland state with dr Holly Lawson and others, we were having conversations every day about what was going on. We were hearing from partners about their trepidation about coming face to face. It was happening in a lot of different States. Our partners from Verizon who were coming to join us had, we were talking on the phone daily and I actually remember connecting with you t o Craig because some of your staff were coming out to be a part of mobility matters and had been engaged with Portland state in wayfinding research. U m, and so we were so thrilled that they were coming out and I, it was, it was really hard, u m, still just to accept that we couldn’t be together in the same space physically because of all the reasons that you mentioned that our field needs time together.
: 4:07
And this particular conference is an interdisciplinary conference that includes transportation providers as well as people in our own , um , field as well as students, other faculty who are engaged in transportation research. So they were also our transportation providers. You know, that that’s kind of the folks that say the show must go on, the planes have to run, the trains, have to run the buses. Um, so they weren’t telling us that they, they couldn’t come. But what finally happened, I think it was Holly grabbed me by the lapels and said, we can’t do a conference half online and half face to face. It’s just going to be double the work. And so I listened to her, which I think is a good decision to listen to people that you trust and kind of go, okay, we’re going to do this differently. Um, so we, we had it online, we had different Zoom meetings going. We had a morning plenary session where everyone was together in the same giant zoom room. We had a lot of hands running the conference and then we decided to have our breakout rooms in the afternoon with different zoom rooms going and they were all with moderators. And I know you’re , you’ll talk about that in a little bit, the logistics of that. But it was a way to preserve the event and in the end it, it turned out to be a good event because I think we had very passionate people, people with disabilities leading the event as well as transportation providers. And people said it was still a really meaningful way to learn and connect. And feel. So I’m glad we did it.
Craig Meador: 5:59
Thanks. Thanks, Amy. We’re going to get more into some of the ahas after that, but we’ll throw it out to Kirk now and , uh, I can only imagine what that was like both for Amy and you, Kirk. But tell me a little bit about , uh, the events that led up to the decision and, and, and how you decided to carry it all off.
Kirk Adams: 6:19
Sure. You know, the AFB leadership conferences is our crown jewel and the Helen Keller achievement awards. I attended my first conference in 2001 when I first went to work at the white house in Seattle and I never missed anything. I went to 15 conferences in a row before I actually became part of AFB staff. So a near, near and dear to our hearts and important to the field. But the decision was really clear once we’d done the analysis. So about mid February, Megan Aragon on our staff who was responsible for the conference, started to do the risk analysis and kept the senior leadership team apprised of developments. Um, all of the factors, the pros, the cons, and that was a shifting target. So she kept that updated. Then on March 3rd, it was a week before the CSUN conference, there were five of us who were scheduled to go. I was actually on vacation, but I was following the news and , uh, Craig knows my whole family is in Snohomish County, just North of Seattle and that was the original epicenter. So I was very aware. One of my niece’s high school was closed. My parents are in their eighties. You know, I was just very aware of it and I, I made the decision that we were not going to have AFB staff attended CSUN to , to fly across the country to Los Angeles, because there was so much uncertainty and you know, we had a staff member with a child who has asthma and we have staff member with some auto-immune situations . So we made that decision and then just shortly after that there was the health and welfare of our community and our partners and our friends is first and foremost. And if we have concern about our own health and welfare, we need to be equally concerned about everyone else’s.
: 8:14
So we pulled our executive committee together , March 10th and our board , has done a lot of work as far as streamlining committees and understanding roles and responsibilities. The whole executive committee was there, senior leadership. We laid out the high level analysis of what the factors were and it was just a very clear, unanimous decision that the best thing for AFB to do would be to not ask our friends and partners to assemble in person. So the conference , um, the Helen Keller achievement awards were scheduled for March 25th and then the conference on the 26th and 27th . So that gave us than two weeks. And then the next immediate decision was let’s communicate to all of the stakeholders and friends and explain what we’re doing and why. And then the third decision was how do we provide value to our community? And that’s when we started planning for virtual content and pivoting to virtual. And we had our first virtual event , less than a week after the conference. A physical conference was scheduled to occur and we had 1700 people register for our first live stream and the first thousand got in and everyone else has been sent a link to the archived captioned audio described , uh, transcribed session.
Craig Meador: 9:42
So in essence, what you guys decided to do , uh, was instead of , uh, like , uh, Amy and them did theirs all on the same day, you decided to break your sessions out then spread them out over over time, which I thought was a , a unique perspective as a way to approach that. So , uh , thanks Kirk. Sergio, you guys – Braille Challenge. Let’s, let’s talk about that. That’s, that is the one kids from all across the country gear up all year for this. All the big contests, it’s a wonderful event that happens from state to state to state and of course the prizes flying all these kids into Los Angeles to compete side by side. The comradery , bringing in professionals, recognizing the braille teacher of the year , uh, all the work that goes into that. And then this year it’s going to be different. So talk about that.
Sergio Oliva: 10:35
Yeah. Thank you so much for inviting me to this. So similar to I think some of my peers when this whole COVID sort of a frenzy started and I personally was still looking forward to going to the AFB conference. Um, like some of you guys mentioned, it’s just such an opportunity to get together with other colleagues and that’s where like the outside of the workshops is really where a lot of the ideas get generated. So I’m going to be quite Frank and share with you all that I really thought that by, you know , the end of June that we would have , uh , this whole situation was going to be over. Um, little did I know that that was not going to be the case. And so we started getting a lot of , uh , emails and a lot of questions. We have 54 different regional sites across the United States and Canada.
: 11:24
And so we started getting a lot of emails, a lot of questions. What’s going to happen as you mentioned , uh , Craig Braille Challenge is a year long program in our seasons. Our regionals happen between early March and mid , uh , early January and mid March and finals is a two day event where a lot other 50 finalists, the top 10 in each of the categories do come to LA and we host like a two day mini conference event where on Friday we welcome them. We try to promote some of tactile activity, just really getting the families to engage with one another. Oftentimes a lot of the braille challenge finalists walk away with having all these different friends and the main sort of day is on Saturday, we’re at the university of California Southern California USC campus. We bring the USC marching band and we kick off with like an opening ceremony and then all the students going to testing. We have amazing parent workshops and followed by an awards ceremony on Saturday night where everybody gets dressed up and we have a keynote, we bring in alumni speaker, we recognize a teacher of the year. So then we thought what do we do? And we did a couple of things. We actually had several conversations with different key stakeholders, like regional coordinators talking to a lot of our TBIs that we work with. And essentially what ended up happening is , uh, the executive leadership team at braille Institute. We made the decision that we still wanted to stay true to why the program started, which is to really promote braille literacy across any stage of wherever our students are. And so we really started , uh, my team and I just really started planning like, how can we deliver remotely this same sort of experience, if you will, how do we engage the families? How do we allow them to introduce , uh, to each other to, you know, to meet other people. And so we , uh, picked up this tagline which we’re going to keep using, which is keep calm and braille on. And I have sort of just held onto that. And really that’s how we ended up planning out the different phases , uh, that we have for that two day event. Similar to what Kirk mentioned, what AFB is doing. So we have the different components and we’re going to be rolling out in their friends at a different time. So there’s a lot of logistics , uh , that is going to go into sending out the final contest, making sure that each final is gets, you know , uh , the proper time. But like you mentioned, the prizes are still here. We’re upping some of our cash prices that Breo Institute gives the students , uh , we’re sending them their traditional swag bag. We’re still asking them for a portrait because we usually have what we call a tactile portrait of all the 50 finalists so that we can sort of detect that sort of skill. Um , also. And so it was very , um, the hardest part honestly, is not seeing people like physically and it is so challenging, but it’s what do you do with what you have? And so how do we still engage? And the whole point why we’re having remote remote Braille Challenge finals and we’re going to do a whole Oscars reveal when we have the finalist . I’m going to go live with my team on Facebook. And sort of announce all the 50 finalists and then we’re going to follow up a lot. So we’re going to be looking at this summer , uh, enrolling all the different sort of components of the two day event. But end of the day, what we really want is to really continue promoting braille literacy. This year we had over 1200 students that participate in and one of our regionals. And we don’t want to lose that momentum. This program got started 21 years ago to really address the unemployment rate in the, among the adult population. And one of the things we all know is that those that are employed , um , they’re braille readers. And that’s really, I found a document that’s what really the program got started, but it’s taken off and there is different pieces like socialization, providing parents with that connection with other individuals in the field. So we’re just continuing to finesse like how we’re going to roll out with the different components and still stay true to what the program consists of. So we have a couple of , um, I guess shiny objects if you will , uh , things that we’re going to be announcing soon. But we’re excited to still have a braille challenge finals.
Craig Meador: 15:53
I am so glad if it is going to continue, I’m sure it’s going to be with its challenges, but I just could not imagine a year without that for students. So that was good news to hear. Let’s talk about that a little bit. Biggest challenges and we’ll just go in the same order again. I guess we’ll lead off with Amy, the biggest challenge for rolling out mobility matters. Uh, now that your , your participants are scattered , uh, across the country.
Amy Parker: 16:21
Well, I just want to say I’m loving this conversation and if I could just say something to Sergio, what is so fun about , um, what you just said is that I could almost see like an Oscar party going on because you know, people can attend the Oscars, but what do they still enjoy? They enjoy the awards, you know, they enjoy seeing snippets of people’s victories and having little parties at home and watching. So I will dovetail into what you said and say that the challenges is to keep that spirit. That’s what Sergio is talking about. The spirit of the event and mobility matters. We, we really wanted people to, to have that interdisciplinary spirit. So there’s the content around it, but there’s also the connections with the people that are there, who’s participating, you know, for adult learners. I think that adult learners need the opportunity for content to be relevant and timely and, and to tie into their own practices.
: 17:23
That’s always, content is always King, you know, in any event, whether it’s face to face or online. So I think what was compelling for us was that we really had some great speakers and content and we needed to coach them. And I do want to emphasize it. It was not just me, it was a team, Dr. Holly Lawson, as I mentioned, but others, some of my students, my O and M students, Kirsten Becky, Amanda, Dina , Ashley, Julie, they all just kind of dove into this experience and helped people behind the scenes . So thinking of it almost like a theater show, you know, where here we’re going on the stage and we’re live broadcasting. You know, some people had to get into the whole idea of, well, how does my hair look? You know, and do I have access to lipstick still or do I not have that at home? And people to kind of allow that and to have fun with that. But also to support people with the technology. So we had participants who were deaf, blind , uh , participating on a panel. And what was really frustrating is of course, if you want an extreme sport, the extreme sport of accessibility as my friend Kirk knows from his leadership in Seattle is communication and communication in, in real time. And this event where we’ve got multiple streams going, so there’s an ASL interpreter for those who can access that visually. There is captioning going on and some people might be participating , um, you know, in, in braille reading along on their own devices with the captioning. I mean, think of that. So that also I think presented both a challenge and extreme challenge, but also the fact that we were able to do that. We were walking the walk of accessibility. Like I love what Kirk said about you know, making a recording accessible and having it described well that is really, really important. So the biggest challenge was all the prep work, kind of behind the scenes and making people feel confident and comfortable with the technology and then the communication for all people to have access when they needed it. So back to the deaf blind panelists , we had one person receiving individualized sign language on her own device because she could not access what was on the screen. We had another person having someone summarize some notes for them in writing so that they could read it on their email at a pace that made sense to them. So kind of short hand . And then we had people who were participating real time , we had Kelvin who presented, who was listing to audio feedback at the same time that he was listening to audio feedback. I don’t know how he did that to respond in real time, but that was what was important is like if we can’t have a conference that is accessible, then we are not fulfilling our responsibilities. So that was the challenge and the joy and the theater , you know, of mobility matters as a lot .
Craig Meador: 20:38
Kirk, do you have anything to add on that with, with what you guys experienced for your conference?
Kirk Adams: 20:44
Yeah, I t hink, u m, the first was the learning curve. We had not done video conference, virtual content. U h, we’d, we’d done some video work before, but nothing to this scale. So we had to learn. So again, all about relationships. We talked to our friends at Microsoft and our friends at Google and Apple and n o, they were, they were, u h, converting some of their C SUN content, u m, to virtual since they had made decisions not to attend. So they shared what they had been learning about, sharpening up the content, shortening up the presentations, making sure t hey’re evergreen, that if you’re archiving something, it’ll still be relevant. U h, n o d oubt down the road as much as possible. And then we reached out to bridge multimedia and M att Kaplow, in New York, who’s worked with AFB for many, many years. And he connected those with people who, who know how to do this stuff. And we, we pride ourselves on our conference.
: 21:44
So we wanted it to be the same level of quality . So, you know, professionally produced and again, accessible for , for everybody. So to learn how to do that. Um, and kudos to our community engagement team , Adrianna Montague, our , our chief community engagement officer. I said, well, I guess we figure out how to do it virtual now. And they, they went and did it. So the second challenge is scheduling. Uh , everyone’s lives are turned upside down. Everyone was doing crisis management. We wanted to get something out top quality ASAP to kind of open the conference, open the virtual conference and, and, and keep our stakeholders engaged. So we wanted it to be as close to the original conference date as possible. And so pulling together the production folks , um, all the people who needed to be involved with everyone’s competing schedules. And that continues to be a challenge. And an third is the, is the technology we’re doing , um , for recording people from their homes and they have their home internet. And sometimes that’s been a little iffy and caused some glitches and some problems. So those are the three so far.
Craig Meador: 22:58
Thanks Kirk. So Sergio, you get the benefit of hearing from Amy and for Kirk as you guys prepare, I know you guys are already into preparations for what comes next. I’m sure you’ve thought of some of these things already. Any ahas they’re in and uh , what are some of the constructs you’re putting in place? Because obviously Braille Challenge is going to be different than AFB , uh , leadership and mobility matters .
Sergio Oliva: 23:24
Correct. And I’m actually a really loving this conversation because I’m taking notes and , uh, I’m not one to reinvent the wheel. So I actually may reach out to Kirk and Amy about some things in terms of logistics. But prior to what I share, like some similar things is, one thing that I forgot to mention is that we are going to be live streaming , uh, via our YouTube channel. Um , the actual winners. So we’re going to have like our alumni speaker come and we’re going to work that out.
: 23:52
But , uh , I forgot to mention that. So there is that opportunity and I hope to see a lot of viewing parties. Usually that already happens because a lot of the families sometimes don’t, aren’t able to come to LA. But to answer your question, I think the operative word here is a , at least for us that we’ve been considering a lot is access for us. We still promote, you know, braille literacy. We still have the Perkins Brailler. And so we’re going to, there’s a couple of things, logistical challenges here. One is we can have all 50 finalists take the contest in one day. That’s just not realistic. And , um, we need to figure out like, what does that window , uh, how do we work? So how do we schedule that so that every finalist , you know, has the same amount of time. And the other thing is making sure that they have access to different materials. And by materials I mean like braille paper and just be ready and comfortable. Braille challenge finals – these are like the top 10 in each of the categories. So there’s a lot sometimes no matter what we say, like this is, you know, it’s not a competition. Like everybody, you’re representing a lot of different students. These are our top braille readers. And so there’s a lot of , anxiety sometimes that goes into this . I’m hoping that although there’s going to be some logistical challenges, there’s also going to be some silver lining lessons there. And that’s one of them. So besides like access to making sure that they have whatever technology it is that they need or materials, it’s really a lot of the behind the scenes. Like how do we actually schedule different things. For instance, our parent workshops are going to be webinars. One of our presenters is actually , um, Dr Ting Siu out of SF State with her new book as well . We’re figuring out how do we actually open this up to a lot more people. And so besides a lot of those behind the scenes, logistical background , um, the , the behind the scenes , uh , challenges, there’s a lot more like a opportunity here so that in the future, this new normal that we’re facing now, it’s going to carry on into whenever we do go back to physically having a Braille Challenge finals. And so there’s a lot of lessons learned here. And one of the beauties is that as you said, I don’t need to go into a lot of details and what both Kirk and um, but what they shared is that it’s a lot of similar stuff and what beautiful thing that we get to learn from one another.
Craig Meador: 26:22
Well, selfishly it’s good for us to have this conversation today because our big conference of course will be in October at annual meeting and we are so having our fingers crossed that the world has returned to a level of normal at that time. And we actually could hopefully get you all in and hopefully we’ll be doing a personal, everyone in person annual meeting this year. But we’re in that process right now of planning both for virtual annual meeting and a in-person annual meeting. We’re hoping fingers crossed, toes crossed , uh, that we’re going to do the in-person annual meeting and we’ll see. We’ll see. Challenging times to be sure. A lot of these times is the show and tell of these conferences. You know, we, of course we have exhibitors at some of the conferences that want to show the latest, the greatest products. It’s also a time to meet with, we’ve mentioned before, colleagues , uh , hear about the latest research here, about the new developments in , uh, programs, learn firsthand about new government regulations without having that face to face. I’m looking for suggestions as well as answers here. How do we keep people informed? How do we close that gap? So I don’t know who wants to answer first that’s open for anybody that wants to take a shot at that.
Kirk Adams: 27:46
Well, this is Kirk. I would just say we’re, we’re, we’re all starting to figure that out and I think it’s going to really evolve. I know Craig, you , um , convened a group of blindness organizations. Everyone’s first instinct was to be helpful and thank boy, you know, people need to adapt. And we’ve got blind kids who need to continue to learn and we got blind folks who need to be able to continue to work and got people in need to access health care and transportation and food. So I think every , everyone rightly started pulling resources together and sharing resources. And so you’ll find many. Uh, we have afb.org/ covid19 and many other organizations have similar pages. And I , we’re talking about how to coordinate that better. We have a access world, which is typically , a magazine type publication. We’ve started to asking individual authors to produce articles that we can get out quicker in the form of blogs.
: 28:49
So there’s been a , been a lot of blogging around resources. Um, we’ve been contacted by most of the names you recognize HumanWare and Vispero and Orcam, and they’re all wanting to help and making products available and services available. And so there’s a great willingness to help and it’s also new . I’m , uh , I know it’ll shake out , um, as time goes on. I think , um, I think we’ll be seeing some hybrids of activities. I think Sergio mentioned a watch party. I think you’ll have some smaller in-person gatherings , uh , combined with virtual sessions in some form or fashion. Um, before we’re at the point where we’re gonna get a thousand people in the, in a hotel ballroom. Again,
Amy Parker: 29:40
I was just to say that , I think that all learning is still intimate and that if people can find ways to share moments online of connection or inspiration or looking at technology together that it be applied, that i t’d be applied to someone’s life or someone’s needs. I think that’s the most relevant for many people to understand what is the need to continue to get to the grocery store or to be a part of a church community or to, u m, connect with their family members or to connect with their healthcare providers. So if a technology and, and u m, or a policy even can be put into those terms, then i t, it, it helps breathe life into the conversation so that it’s not just a show and tell, but it’s technology, meeting people where they are. And with what, what they want to accomplish with their lives or what a family wants to accomplish with t heir, their son or daughter. And, u m, that I think it’s also really relevant from that kind of demonstration. If it’s via a video that then the person themselves be a part of the panel that discusses the use of that, u m, and reflects on it. So, and, and showing those professional and u m, parent partnerships around some activities. So I’ve seen a little bit of that i s happening online now. Like Kirk mentioned, people have a strong desire to be helpful. I remember we scheduled with, u m, the CEC, the council for exceptional children. We scheduled a webinar before the pandemic. It was to happen in April and it did happen and many people that attended, u m, appreciated it and they said, we see now ways that this can be applied to our immediate situation and had conversations after that and wanted to have conversations then again about how to apply it. So maybe layering, u m, a phase one demonstration and then a phase two demonstration after something has been tried for people to come back together and have a facilitated discussion about its use so that they’re not just exposed, they’ve actually thought about it, they’ve kicked the tires on it, they’ve tried it.
: 32:10
Um , I think tools like team viewer where people can add ’em at a remote , um, setting still receive instruction and be able to share a device with an instructor. Those are, those are all really promising. So it’s, it’s still , uh , a challenge, you know, and it’s still not the same as face to face, but there are, there is a beauty to it as Sergio said. I think for some people it actually gives them more access. Um , one person who attended one of your webinars, Craig on with Donna Sauerburger on street crossing with no traffic control. There were 800 people that attended from all over the world. And his reflection was we all had a front row seat. We all had a front row seat to that instruction. We all got to hear Donna and listen really well and could access what was on the screen. So , um, in some ways when you think about a face to face conference and a giant ballroom full of 800 people, sometimes you can get a little loss . Sometimes the sound quality is good in one part of the room and not the other . Sometimes the air conditioning is freezing and you’re just trying to pay attention in that way. But if you’re home and you’re in your comfortable chair and you’re listening to someone that’s got the depth and expertise like Donna does, then, then it can be very intimate for you.
Sergio Oliva: 33:39
Yeah. If I may , um , add to , uh, to that, I think that one of the things that I keep thinking about, not just for Braille Challenge but also running our youth programs and some other programs is how do we bring our services into the home? Like how do we actually bring the program to, you know, the students. And I think that one of the things that we’re definitely , uh, playing around with a lot and I think I’m speaking a lot more for like our youth and child services, but I think it , uh, may apply to everyone just really leveraging social media. Um, I think one of the things that I can only speak from my experience is that not every parent, or not every staff perhaps or not everybody , uh, was as comfortable , uh , with social media platforms or even various different technologies. And so in a way, this whole sort of situation as almost , um , pushed us as a field to think outside the box and to continue , um, trying to again, provide the same services and programs and the same opportunity, but how do we do it in a very different way. And the beauty is that in other fields perhaps are using, you know , uh , zoom, I know that we’re really using Microsoft teams and I know there’s Google hangout, but there’s this sort of a gift and being able to explore what I think would have taken perhaps us as a field, like a few more years. And so for what that I feel it’s an opportunity to leverage social media and some other , uh, technologies. But one thing that, the last thing that I’ll mentioned is that , um, I think it’s also important to have an organized way of distributing or sharing information. I really am looking forward to this initiative from , uh, APH in terms of like a clearing house, if you will. And any org or any student, any parent, anybody can access this so that it’s organized in a way where there’s a bunch of different resources. I can tell you that here in the state of California, there are different calls happening.
: 35:39
Like, how are you teaching O&M? Like, how are you guys still teaching braille remotely? And it’s bringing Northern California and Southern California that together in a way that at least I didn’t really experience that as much other than, you know, a conference here and there or CTBVI where we alternate. And so it’s definitely an opportunity for us to just not just wait for that technology wave that I heard about a few years ago, but to sort of just for feeling comfortable , uh , in riding this wave and seeing where this is going to take us and how do we showcase perhaps an exhibit and how do you make it interactive but from the seat of your home. And so how do we really engage and bring these services to , uh , people? I think it’s one of our key things.
Craig Meador: 36:24
Excellent thoughts. I want to ask a question to the three of you because I value your, your wisdom and having known you all for quite a while . Uh, I’m looking for some direction here to uh, both as an agency and also as an individual. There are so many voices talking right now and this is, if I can for a sec, I’ll move outside of our field. When you think about coven , you can turn on any new stations, CNN, MSNBC, NBC, CBC. But their voices and many of the voices are saying the same thing. Some of them I have different messages. So if I take that application at some point to me, like last weekend I got to the point where it’s like so much noise voices had become noise and I had to step away from it for a day or two because I just couldn’t hear the message anymore.
: 37:19
So here’s, I’m going to parallel that to our field and have you respond. We’re all moving to these, this idea of a social platform of , of zoom zooms become our best friend or uh , teams and , and all of these are wonderful tools. We’re all using. Uh, the exciting thing is that as Kirk mentioned, every agency has responded beautifully saying, we’ve got tools to help. We’ve got tools to help and they’re wonderful tools. They’re all good tools. And we’re seeing a lot of individual teachers from all across the country, individual rehab counselors and parents and students and just practitioners, people of life saying, I’ve got a solution. I’ve got a solution. Things are being thrown out there. Have we? Or is there a concern? There are, do any of you see that, that we’ll get to that point where there’s so many voices. It just becomes noise. Is that just an a, so that’s question one. Number two, is there a natural way that that’ll take care of itself? Or three, is there a need to control that?
Speaker 6: 38:23
Yeah, I’ll be brief. This is K irk. So w e, we discussed that and what we’ve decided to do, u m, f or first of all we talked about our values. U h, in times of turmoil. I t’s good, good to ground yourself in v alues. So, you know, we went through a really good process with our employees, all the staff of AFB and, we’re, we’re basing what we do on learning collaboration, excellence and impact. So when we look at that, we thought, you know, what, how do we learn from this? How do we collaborate, how do we do whatever we do with excellence and how do we have impact on what we’ve really decided to do i n the short term? As is narrow our focus down. There’s lots of blindness organizations with different focus areas. And w e, we defined our focus areas of education and e mployment a nd aging and, a nd we’ve decided in the short term just to focus on two things with our research, our public policy, our convening and that’s education of blind kids, K -12 and, u m, successful continued, u h, employment of, of blind adults who are currently employed. So, you know, there’ll be overlaps between various areas, but w e’re, w e’re trying to stay centered on those two things because we think we have some particular vantage points there. W e’re not a direct service provider, we’re not in that, in that business. But we are in the business of conducting research and looking at systems and understanding where opportunities are and where barriers are. So when we look, when we look at all this new legislation that is flowing through so rapidly, we’re, we’re concentrating on those two things. W e’re, where are the opportunities to enhance opportunities for education t o kids and a continued successful employment of blind adults and n o w here, where a re the threats in those two areas? So we, we’ve decided to do our part by staying on i t, by defining our lane or for the next stretch of the road here and staying in it.
Sergio Oliva: 40:23
I think that to answer your question ideally, and I am not using my work hat , it will, I, I wish that it could be sort of more of a natural selection of a lot of all these different things that are going on, but I , I don’t know. I think that’s wishful thinking. I think that one of the things that does bring me back to like really trying to understand and iron out some of these , uh , I’ll use your word like different noises is what is our end goal. And I know that at least for us, and I’ll just speak to, you know, braille challenge and I think a lot of agencies that work with you, we want to do what’s best for each child and each youth and also the parent, the family at home. And I think that if you approach anything with that in mind , uh, a lot of us, if not like the whole field, like we all have the same end goal.
: 41:22
I don’t know if we are going to take the same path and getting there, but I feel very comfortable that we’re going to end up , uh, reaching the same goal. That’s okay and it’s going to look different for different people, for different organizations. But I do think that there is a value and perhaps having a , some of these larger organizations just take the lead and helping sort through some of like the different sort of situations that are happening. And I think that’s is one of the biggest sort of a , I always talk about when I talk to people in the field that , uh, I, I’m not from this field and I thought, okay, I’m going to be in this for three or four years and I can’t leave. Like I’m in love. I’m in love with the people I’ve met. I’m in love with what I do. I’m in love with , uh , our population and it makes me want to try harder. And so keeping that in mind I think will allow for a lot of the different , uh, any noise that may come my way as an individual or even the program or the organization.
Amy Parker: 42:26
I’ve been really loving this conversation. This is Amy. I, I think that so many good points have been brought up about our values and what motivates us and what kind of clears our head through the noise. It can be like also an avalanche of resources. I think we can get confused and thinking that, well, our job is to make parents TVIs. Our job is to make parents O and M’s and parents are parents, right? They have roles and responsibilities and natural rhythms to their lives. And so sometimes what’s been helpful is thinking about professionals as listeners and navigators of those resources. So instead of saying, here, here’s every resource that you could possibly want today when particularly what a , what a parent may want to hear is I just need someone to talk to about what’s going on. I’m feeling frustrated. I don’t know how to use this tool that he has. That’s really important for him in terms of reading. So simple things. Um, so I think the human connections are more important than ever. And I’ve appreciated APH his leadership in terms of bringing people together and having these open conversations about resources, how to synthesize them, how to talk about our different roles and responsibilities with, with the synergistic view. Um, and then looking at maybe ways that professionals can help people navigate and distill information and make it just in time and just for them so that they’re not feeling just this weight of huge learning curves when, when really they just need practical information that’s tailored to them. So can we help them do that instead of just dumping information on people? And if we’re overwhelmed, just think of how other people may feel.
Craig Meador: 44:35
Well, thank you all for indulging , that question of mine . I went off script the offerings that you guys have , uh , put out there, the sheer numbers of people that are showing up and, and uh, and I’m not just, and now we can broaden this beyond what has happened already, but I , I know Amy that you are a work with this huge deaf, blind consortia that you guys have your big event every summer. Uh, I don’t know how that’s gonna play out. I’m sure you guys are already on the planning on that and figuring out what to do next. Do you feel like the virtual environment , um, cause sometimes you go to conferences and it’s very easy to go to a conference and be a passive learner, you know, and, and be more worried about is there still coffee at the back of the room as opposed to what is the speaker on stage setting. Do you feel in some ways that this new virtual environment, this , uh , the virtual invite to conferences has deepened the opportunity to connect? And if you have some evidence of that, I’d love to hear that.
Amy Parker: 45:43
Well, this is Amy. If I could jump in. I, I think, like you said, if the structure of the online event allows for some active learning, if it can engage the audience, even with what they have right in front of them or with their own bodies or with their own hands to say, here, let’s try this together. Let’s look at this together. Let’s listen to this together. Try this with your own , um, with your, with a piece of paper that you have in front of you or a Brailler, let’s, let’s work on something. And then as you discover something, we’ll come back together and talk about it. It’s more of a, again, a very personalized way to communicate with people. Um, some of the best YouTube ERs in the world, they don’t ever speak in generalities. They , they speak to you, they say, I’m here for you today to talk about this and you can do this and you can do that. Um, so some people in communications that are much smarter than I am, have studied that and have looked at ways to make learning really personalized. So again, I think if the activity is meaningful and salient and engages with what the person act vividly , it could actually be a more intimate and effective way to learn,
Kirk Adams: 47:11
This is Kirk . I can see how the classroom type learning, the information sharing could possibly be even more effective in a, in a virtual environment. But the thing we’re going to miss is the other parts of why are we gathered together? It’s , it’s , um, the sidebar conversations, the camaraderie, the random connections you make talking with someone about a program you’ve learned , a promising practice, you find out do you have a resource they can use? So we’re going to have to figure out how to build that stuff in , um, to the, to the new environment. Um, at AFB, we pivoted to become a virtual organization a couple of years ago. Um, which position does I think, well, to be nimble in this environment, but we’ve done things like , um, for general staff meetings, have people log in 15 minutes ahead of time with no agenda. We just call it water cooler time. Um , we have virtual staff lunches. Um, as soon as , uh, as soon as the , um, COVID 19 situation emerged, we started , uh , uh , half an hour, nine 30, Wednesday morning. So it’s a health and welfare check in no agenda. Um, I’ve, I’ve been invited to a couple of virtual happy hours, which have been interesting. And , um, so, so those are the pieces that I think we have to be intentional about and email , um, is a good way to share information, but it’s not a great way to have a dialogue , for instance. So we’ve been talking to staff about pick up the phone and talk to people. This is a time to strengthen relationships and , and let people know that that AFB is here and that we care. And you know, when, when, when you’re thinking about firing off an email to someone, pick , you know , pick up the phone. Um, so we’re going to have to be really intentional about that or we’re going to lose a lot of what’s really important to us as a community.
Sergio Oliva: 49:14
Yeah. I’ll just add like a few , uh , lines here because I agree with, I think , uh, to what Amy was saying. Uh , there’s different styles of , uh , learning. And I think that there’s something to be learned. Also the perhaps when , uh , we do attend conferences , uh, physically, you know, there’s sort of like the more social butterflies like myself that I somehow get energized by talking to people or figuring out like that elevator pitch of like, Oh my God, you’re Craig net , or like, this is what you do. And so there’s something that you cannot really , uh, recreate in a virtual sort of environment. But I think it’s just being very aware of a size of like the group that whatever you’re doing. Um, but to what Kirk also said, I think it’s really key to just take the time to , uh, connect with people a lot more and figure some things out.
: 50:09
I’ll share an example that they, they started this, the San Fransico Lighthouse, they have , um, a movie night and we’re now discussing how do we have a virtual , uh , social with the San Francisco lighthouse youth program and the Braille Institute there in San Francisco and obviously San Francisco lighthouse and we’re in Los Angeles. And so it’s that, that’s , I use that as an example to , um, how do we actually manage that? How do we facilitate perhaps discussion and questions about the movie? But at the end of the day, it’s about just really connecting , uh, as individuals and letting somebody know like, Hey, like that anxiety you’re feeling, guess what? Like Sergio from, you know, downtown LA is also going through that. And uh , beyond that though too, it’s also being important. Something that , um, I know we’re coming to an end, but I really wanted to highlight is what Amy said, that we’re not trying to make parents TVIs. There’s a lot going on. I , I know that for my child development department, a lot of our families have multiple disabilities and what their kids zero to six and now they have their other siblings, you know, kids at home. And so it’s a lot going on. And so I think that this whole like getting a virtual invite perhaps who like a zoom happy hour, it’s welcome . It’s just sort of like listening to different people and it’s , it’s a learning opportunity and there is no right or wrong way and I continue to love the fact that everybody is sharing ideas and it doesn’t feel, at least for me, it does just doesn’t feel competitive. It just feels more like, huh, there’s a lot more options now. Like what am I going to do and how am I going to connect? We know the families and youth that I work with.
Jonathan Wahl: 52:00
Thanks to each of you for being a Change Maker and giving us a lot to think about as we move into conference season. That’s it for today’s episode. Until next time, be sure to look for ways you can be a Change Maker.
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Claire Stanley: 0:01
Know that you’re not alone, that there’s thousands of us across the country and we’d love to connect.
Jack Fox: 0:07
Welcome to change makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host.
Jonathan Wahl: 0:21
Welcome back to change makers, a podcast from American printing house. I’m Jonathan Wahl. Today we’ll hear from Claire Stanley, the Advocacy and Outreach Specialist at ACB as they transition to helping their members virtually. But first we’re talking jobs with Joe Stretchay. Joe currently works as a producer for streaming television and is a blindness consultant, but Joe spent much of his career working specifically on unemployment issues for people who are blind or visually impaired. Because COVID-19 has caused unemployment to skyrocket, we thought it would be a good time to talk about how you use your time at home to get job ready. Joe, thanks for being a part of Change Makers today.
Joe Strechay: 1:00
Oh , it’s a great pleasure to be on the American Printing House for the Blind’s podcast. I really believe in what APH does and as an organization and it’s a really important time to provide employment advice and information to the individuals out there , uh, with our current situation around , uh, the COVID-19 virus.
Jonathan Wahl: 1:22
Yeah, thanks Joe. And you are super well connected in our field. When you’re talking with your friends, how is COVID- 19 impacting job reliability for people who are blind and visually impaired right now?
Joe Strechay: 1:34
Yeah, I’ve been speaking to a lot of people who are blind or low vision around the United States who’ve been impacted , uh, by COVID 19 and, and really the employment world and, and our current market. Uh, many if people had been laid off or furloughed , other people were contractors and are not getting work. Uh , and they’ve been impacted where their employment’s been eliminated or their hours have been reduced or they just don’t know when they’ll have work again. Um, and, and that’s , that’s a scary thing. I think people across the country , uh , and around the world or really being impacted in this way. And, and for individuals who are blind or low vision, not just the, that employment side, the accessibility as well to some of the remote , uh , employment or remote working , uh, whether systems are accessible and allowing them to do their work from home. Uh, you know, that’s, that’s, that’s a big deal for sure.
Jonathan Wahl: 2:36
A lot of people are without a job and stuck at home and it , it’s a super tough spot to be in. How can those people right now be using this time to prepare?
Joe Strechay: 2:46
Definitely. Uh , there are many ways it’s people could be preparing for employment, but also seeking employment that is out there. Um, you know, first thing you have to know about yourself is really know where your, your skills lie. Uh, you know, not everyone can work remotely and do it in a efficient manner , uh , depending on like full time employment and versus contract or part time. Um , there’s, there can be flexibility there, but working remotely means often that you have good technology skills unless you’re doing some kind of a , uh , creative employment where you’re uh , yeah , putting together some kind of product or uh , or some kind of a service. And most services at this point would have to be virtual. Uh, so those skills around technology com very important, the compensatory skills. So if, if you have to be self aware where your strengths and weaknesses are. So figuring out if your compensatory skills like your typing skills , uh , computer processing, like using Microsoft office or the Apple suite or Google suite , uh, you’re able to use those in an efficient manner and it’s not really should be taking this time to work on those skills , uh, and, and figure out how you can improve them. There are a lot of resources out there that offer assistance in typing. American Printing House has their Typer and such. Uh, and there are others out there, but , uh, APH is, is free. Uh, you could be downloading that and practicing your typing skills and getting them up to par. But then also there are all kinds of , uh , tutorials for Microsoft and, and other , uh , softwares I w knowing where your skill levels are in whatever you’re doing and, and if, and if you’re in, you have a certain level of education, there are a lot of online courses right now and uh , being offered whether through universities or through , uh , programs or certificate programs , uh, thinking about bettering yourself in another way. Um , I, I think this is a unique time and people have that time. Uh, you know, there is a lot to balance if you’re a parent or family member and you have children and uh, you know, the education system , uh, and having to navigate teaching your child well, accessing a remote learning with them and uh, and then also your everyday , uh, pieces of life as well as, you know, sanitizing your hands and your home and products , uh, throughout a and they’re taking the time to figure out, assess and become more self aware , uh, about your skills , uh , looking on at to enhance your skills and improve your weaknesses. We all have strengths and weaknesses and the more aware we are of them, the better off we are for the future. Uh, it’s definitely something that comes up in the employment process. You know, they’re common interview questions asked and often people ask about your strengths and weaknesses besides your strengths and weaknesses. Uh , you can be taking this time though to look at what your presence is like on social media. Uh, assess , uh, what your presence is like. Uh , because you know, when people are looking to hire someone, they are looking at your social , social media presence and not , uh, you know, having someone look at your social media presence, someone trusted out there who’s a professional and who can give you realistic feedback on what you can improve. Uh , whether it’s on LinkedIn, Facebook, or on another form of social media, Twitter, Instagram, you know , uh , Instagram is a visual media. It’s become more accessible. It’s not totally accessible, but it’s come a long way. Um, but utilizing someone’s assistance, visual assistance to look over those , uh , resources to see if your social media is something that presents you in the right manor. And, just like that when you’re corresponding with people, your email address. Like I know I’ve been in the situation as a , when I was the Bureau Director in Pennsylvania or at the American foundation for the Blind, I remember hiring interns and from a local university, these are seniors and juniors and, u h, in college and, u h, looking at email addresses, like, u h, like huggy bear or, something like that. And when I see email addresses like that, I , pretty much dismiss that person and I usually try to give them feedback on that, u h, that that’s something that turns employers off. I knew tons of them. U h, employers and people in the business world who say the same thing. If you see these like sexy man, 19, u h, that’s not appropriate. That’s not something you want representing you.
Jonathan Wahl: 7:46
It doesn’t set you up professionally very well.
Joe Strechay: 7:50
No, it doesn’t. You’re right, Jonathan,
Jonathan Wahl: 7:51
In a blog you just recently wrote for us, you alluded to it there, you talked about your personal brand and I think that’s really important, you know, how do you want people to see you professionally? Any other tips for using this time to really promote who you are and how you want to be seen professionally?
Joe Strechay: 8:09
Yeah, your personal brand is constantly changing. It’s how you want to represent yourself to the world. Uh , we, you should be self-aware about your strengths and weaknesses, but you also have to be self aware about your branding. Uh, what is your brand? And, and I think a great exercise is to write out what you believe your personal brand is and your professional brand and then , uh, asking others to , uh, to provide you with that information as well. The see if it matches up. Um, similar to your, if you were measuring kind of assessing your strengths and weaknesses, you might ask people about that, your personal brand or professional brand, you’d ask them to give them input , uh , give you input on what they believe your you’re professional , personal, professional brand is. Uh, and , and then seeing how that meets up, but also looking at what you want it to be and how can you make your brand that , uh, this, this, this professional brand that really reflects what you want yourself to be seen as in the employment world. You know, I have a professional brand and it’s changed over the years and , uh, and it’s specific and the more successful you are out in the world , uh, often the, the more room you get to be yourself. And depending on what kind of profession and career field you’re going in, there is, there’s a lot more allowance , uh, for , uh, I would say I’m going to use the word deviancy like differences and, and, and also extreme differences in, in your personal brand and [inaudible] and your social media. Then there was in the past, but it’s still out there. And when you’re starting at the bottom, like trying to get your foot in the door and in a new employment, you want to present the best brand possible. And , uh , you know, I’m a person, an individual who has long hair. I have a ponytail or long hair and a, and a beard. And, and you know, when I was coming out of college , uh, at East Carolina university, I was going to interview for these , uh, for these opportunities with some major sports teams and uh , the New York metropolitan area and also sports public relations and marketing firm. And the two days beforehand I donated my hair. I cut my cut like 13 inches off and donated it and I had more, much more , uh, appropriate conservative cut. Uh, not totally conservative, but, and I remember going into these interviews and , uh, one of them with , uh , the New Jersey devils actually , uh, they, at the end of the interview, the person I was wearing, like a sport coat and pants that I bought for like 10 or $13 that my twin brother helped me pick out at a second hand thrift store. And I was bending over to reach for something the individual was h anding me at the end of the interviews that went really well. We clicked and all the, I met with executives and, a nd department heads a nd, and u h, the, the gentleman saw a beaded necklace under my collar and, and he said to me, he’s like, so I saw your necklace under your collar, your, you know, your shirt was a little loose there. And I could see y our, you h ave this beaded necklace. You know, I , if I, if I had seen that right in the start of our interview, I pretty much w ould h ave taken your resume and thrown in the trash, m et with you for like 30 or 40 minutes and then, u h, let you go on your way. U m, but you know, I, I saw who, u h, who you are from our time together over these hours a nd, and I, I really think you’d be a great addition to the organization, but my message to you is it’s not the 1960s anymore. And if you were to come in here long hair, so he was referencing like a, a more, less conservative, more liberal, u h, look, u h, I w ould’ve dismissed you and he didn’t know that I cut my hair two days before and donated it. And I, h e’s like, w we have a military background or my, our owner of our team has a military background or CEO has a military background. I’m a military background. U h, we’re, we’re conservative organization. We use, u h, we w ere, u h, black suits, gray suits, a Navy blue suits, very, very professional and c onservatives, and having long hair or a beaded necklace wouldn’t fit our, u h, our brand for our organization. And that’s not what we’re looking to portray. So I would suggest that you walk out of here today, you h ave this opportunity, you can decide and, u h, you can, I suggest you, u h, cut that necklace off and never wear it again. And uh, I left that day thinking one little thing could turn someone off. And you never know what that, that little difference is. And if, when you’re starting at the bottom and you don’t have that professional experience or you don’t have your foot in the door and you don’t have a proven track record , uh , that little thing can be a big thing and you have to decide for yourself. I decided, I cut that necklace off right outside of the building ,the arena. And , uh, I didn’t wear it again, but , uh , and I realized, but as my career grew, I was able to be a little more different and, a nd accepted for that. And, a nd times have changed as well. But, u h, u m, not every organization has, so you have to understand, u h, what things about your brand, u h, might not meet up with the organization you’re applying with. And , uh , that’s something I’ve, I’ve learned. There are other times in my career where I’ve written my hair down or , uh , uh, done in a different way. Or , uh , I trim my beard down to a specific, in a specific way to get a job or start a job to present the image that they were , uh , they’re looking for. And then over time prove myself to the point where then it didn’t, didn’t really matter. And , uh, yeah, those are some lessons that we talk about in that blog post and , but also, you know, those are life lessons and, and, and people have to decide what’s best for them.
Jonathan Wahl: 14:20
Definitely. First impressions are huge. But I do want to say for people who don’t know, Joe, he has great hair and I was actually thinking about embracing it the other day because I can’t get to my barber and I don’t know how long it’ll be. So, you know, great example, but we might all look like Joe Stretchay before this is through.
Joe Strechay: 14:35
For sure .
Jonathan Wahl: 14:37
With people being laid off right now, there are some industries and some jobs that are hiring more employees. So do you have any recommendations for people who are looking for work right now with the kinds of fields or kinds of jobs that they may be able to do that may be, that are currently hiring?
Joe Strechay: 14:53
Definitely a lot of , uh , organizations that work in a health related fields , uh , and not just as doctors, obviously, but the surrounding fields are, are hiring and , and, and have opportunities. And again, there’s some of that may involve actually being on site , but I number some of the logistical side of things. Um , what , whether you’re working for a company that is providing products that are necessary for the current time period. It might be logistics working from home or over a computer and , and the , you have to have those good skills. But I, you know, we have customer service like Amazon and all these shipping companies and other businesses that are , uh, and they’re offering opportunities where you can work from home , uh, what were call centers. And a lot of them are moving more remote. And , uh , so having that to a people working in distribution centers , obviously a warehouses, construction, essential construction , uh , as people are trying to meet the needs around or medical situation and , and such , um , progress in construction continues , uh , in those realms. And , uh, again, it has to be essential. But you know, these are fields that have like really amped up and the entertainment world, a certain , uh, companies have really ramped up their services and , and that involves some it side things. And some people who have software and cloud , uh, cloud work around programming , um , might have more opportunities , uh, people doing , uh, educational technology , uh, or, or that can do virtual technology , uh, online education. Uh, all of those realms have a ramped up , uh, opportunities and are really have been hiring. And , uh, so these are, these are areas that you could look at and, and, and you’ll probably see lots of job postings around those businesses. But also as this comes to an end, a lot of these companies and businesses that I’ve had to lay off, people are going to be hiring people and not just rehiring people, but hiring new people because people are going to move on to other businesses or change fields or , uh, you know, so there’ll be a lot of opportunities out there once this, the time settles.
Jonathan Wahl: 17:17
Lots of good ideas. J oe, for people out there. You know, struggling right now. This, I think the unknown is hard and not having a job in the midst of this unknown makes i t even harder. Just any words of encouragement right now.
Joe Strechay: 17:32
Definitely I think, you know, being productive and really setting up your day , uh , like the employment process and our current time period. It’s not like, I think I joked in a blog post about nine to five like Dolly Parton . Uh , but it’s, it’s really, it’s , it’s really about like making sure you’re setting up your time, scheduling your time and using it wisely. This is in a lot of ways, this is a great opportunity for people to get their skills up and become productive in a different way and really focus on what their brand is and what their resume is. Get their resume cleaned up, get a , their personal brand Lake , not just their personal brand, but also their sales pitch there. 32nd to two minute elevator pitch. So you have the opportunity to get on the elevator with someone who holds the keys to your dream job or the job you want. Uh , and it’s, and it’s a , like a , the state of Florida is Capitol building, which is 22 stories and it’s a high rise Capitol . You’re getting on at the ground floor and, and you’re getting into that elevator and that person holds the keys to your next job that you’re interested in and you have between that ground floor and 22nd floor. D o y ou sell them on yourself? What your background is, what you c an bring to that organization. I also at the end, I include my disability because you know, a , I think it was a 2011 study by the national industries for the blind where they asked, u h, gatekeepers and human resources professionals and u h, specific to, u h, hiring persons who are blind or low vision. What are your concerns about it? U h, w hat, what are your thoughts about hiring someone who’s blind or low vision? And number one was can they do the job and how are you , they do job like , uh , so explaining how you do your work, whether it’s using technology, including assistant technology and talking about in practical terms , uh, like not technical terms. And then also , uh, you know, number two is how are they going to get to work. So talking about how you’re gonna get to work , uh, but also how you navigate using your white cane or a dog. Uh , you know, the employment process is really about creating trust and , uh , you have that opportunity to practice all these skills, how to talk about it, how to help people trust you, but also create that, that relationship. You know, we’re, we’re living in a time when you can , uh, reach out to mentors who are doing a work that you want to do, like reach out to them and talk to them , uh , role models and, and learn more and explore more in and work on your skills. It’s, it’s, it’s a great opportunity right now. You have that time where you can reach out and , and you can learn more and you can practice and talk to the people that doing the work you wanna do and find out how they got there. And we all have mentors. I have mentors who are successful people who are blind or low vision. But also I have mentors who are not a blind or low vision that uh, give me advice on employment and, and that are doing the work I want to do and , and help you with that path. So take , take advantage of this time but also be safe and, and, and stay healthy, you know , uh, you know, make sure your taking care of yourself and, and uh, staying physically fit, assessing your clothing as well to make sure that you’re presenting a appropriate, appropriate image when you show up a dress dress for success.
Jonathan Wahl: 21:02
Thanks Joe . You’ve left us with a lot of things to think about and for those of you wondering about the blog, I’ll be sure to add that link in the show notes so you can check in on that. And Joe, I just want to thank you and let you know that on behalf of all of APH we are grateful for your friendship and just everything you’re doing for the field. So thank you for giving us your time and your expertise. We really appreciate it.
Joe Strechay: 21:23
Thank you Jonathan . It’s been a great pleasure and I wish everyone out there the best. And , and I’ll be thinking about everyone during this time and thank you again .
Jonathan Wahl: 21:35
Next up we’re switching gears to talk with Claire Stanley from American Council for the Blind. She’ll talk with us about how they’re helping their members right now during this pandemic. Claire , thanks for joining us.
Claire Stanley: 21:46
Yeah, definitely. Thank you.
Jonathan Wahl: 21:47
There’s so much going on in our community and our country right now really across the world. How is ACB working to connect with its membership with everything that’s happening?
Claire Stanley: 21:57
So ACB is trying very hard to continue to bring our community together cause that’s what we are. We’re a community of members of people who are blind or visually impaired. So we’re doing that in a few different ways. Um, the most obvious, I guess for lack of a better word, is doing a lot of community events through Zoom. So kind of virtual Hangouts, which has been a lot of fun. We realized that as we have to stay home and not physically interact with each other, we still want to interact with each other. So we’ve had a lot of fun zoom meetings. Some are serious more topics based on how to get through this crisis, what services are available. But some that are just fun and silly. Um , our executive director and our president had one a couple of weekends ago about baseball cause they love baseball. Um, so some just like fun, you know, lighthearted, get together and talk about our interests. So kind of the whole spectrum of just spending time together. Yeah. And then of course , um , for those of us who work on the advocacy side, cause that’s, that’s my job title. So we always like to bring up that we’re also working toward advocating for the rights of people who are blind during the COVID crisis. So if anything that comes up , uh , government wise or services wise, that’s been a negatively impacted , those of us who are blind, we’re making sure that we’re taking actions to make sure our voices out there. And if something happens we say, wait a minute, don’t do that, or please change this. So , uh , that’s also something we’re working hard on.
Jonathan Wahl: 23:24
If there’s someone out there listening who’s saying, Hey, I have a right that’s being affected by this, should they reach out to you to get help in that area?
Claire Stanley: 23:34
Yes, most definitely. That’s what we’re here for. We’re here to advocate on behalf of the people who are blind and visually impaired. So we always tell people you can email us at advocacy@ACB.org or you can always call us on our , um , national office at (202) 467-5081.
Jonathan Wahl: 23:54
Perfect. Now you mentioned those virtual Hangouts. I know for a lot of people, myself included, part of what’s hard about this is just feeling that isolation at home and I’d be able to go anywhere. What’s the response been? Are people enjoying just, even though it’s virtual, just getting to hang out and talk and feel human again?
Claire Stanley: 24:10
Yes. People are loving it. We have gotten such great feedback from people. Um , again, it’s not the same as being physically in the room together, but it’s the next best thing and people are having so much fun and people keep saying more and more people want more. So , um, it’s, it’s been a great positive feedback from people.
Jonathan Wahl: 24:28
Awesome. Speaking of in the room together, you know, I think we’re all looking forward to ACB this year and I know you all had to make the tough decision to make that a virtual conference with everything happening. How is that going to move forward? What should people know about the conference this year?
Claire Stanley: 24:44
Yep . So we will be going virtually, which was such a hard decision, but we ultimately knew it was the right decision. Um, because we want to make sure that everybody in our community is safe and healthy. Um, but we are going to do our best to make it just like every other convention. Obviously that interacting together will be missing, but otherwise we’re trying to bring together all the same , um , speakers that usually would come. We’ll still have general session every day. Um , we’ll still have our affiliate groups doing their own afternoon breakouts, a lot of the same fun. Um, evening events will still be going on. We’ll still have our auction, we’ll still have our like talent show that we usually have. So a lot of the same kinds of things. I’m just being virtually, so we’re , we’re working our hardest to make sure that almost everything is just like it usually is.
Jonathan Wahl: 25:34
For those of us who are planning to attend. Will those virtual updates just come by email?
Claire Stanley: 25:39
Yes. And a Janet Dickelman our convention planner is working really hard to, to get all the information out there for everybody.
Jonathan Wahl: 25:49
Thanks Claire. For anyone who’s just struggling, you know, with all of this change and all the unexpected things happening, do you, from ACB’s perspective, any just words of encouragement for, for your membership or people listening today?
Claire Stanley: 26:02
For sure. Um, you know, we just want people to know that we’re there for them. Again, we are first and foremost a community , um, of, of members. So if you guys need anything, if you want to meet other people in your region , um, you know, Hmm , maybe you’re a woman and you wanted to talk to another woman. If you’re from California and you want to talk to another Californian , um , or other things like that, please reach out to our membership coordinator, Cindy Van Winkle. And we’re really trying hard to just connect people cause we get it. It’s a time where immunity is more important than ever. So just know that you’re not alone, that there’s thousands of us across the country and we’d love to connect in any way we can.
Jonathan Wahl: 26:44
Thanks Claire. We at APH are very grateful for ACB friendship and just for everything you’re doing for our field, so we appreciate your time and wish you the best of luck moving forward with the conference.
Claire Stanley: 26:54
Definitely. Thank you so much.
Jonathan Wahl: 26:58
And that’s it for today’s episode. If you have any questions for APH, be sure to drop us a note@communicationsataph.org we’ll answer what we can on our next episode. In the meantime, don’t forget to look for ways that you can be a change maker this week. Coming up on the next episode of Changemakers, another important roundtable discussion with all of the summer conferences in our field going virtual, what’s the best way to stay connected and work together? That’s a question we’ll tackle next Thursday.
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Jonathan Wahl: 0:00
Welcome back to Change Makers, a podcast from American Printing House. My name is Jonathan Wahl, I’m part of the communications team at APH. Today we’ll hear from Scott White from the NFB news line who will explain how they’ve created a place where you can get the most up to date info on COVID-19 and we’ll give you info on a survey that was released by leaders in the field of blindness to give feedback on how stay at home measures are impacting people who are blind and visually impaired. But first I’ve asked Alan level to join us out as the information and referral services coordinator for the APH connect center. He answers, calls and response to emails to connect people to needed resources across the country. Alan, thanks so much for joining me. Thank you for having m e. Alan, for people who are not familiar with the connect center information referral line, tell me a little bit more about this service and how people can use it.
Alan Lovell: 1:08
Well, the information and referral line is a service that is connected with what we call the APH connect center. So the people can call our 800 number and or go to one of our , resource websites, family connect, vision aware or A PH career connect to find answers to questions relating to blindness and visual impairment. And the information that we have in our databases ranges from birth to great grandparents. Uh, you know, the whole scope of life, if you will. U h, and so people can call the 800 number and find out where to find resources in their area or if they have a question that might be along the lines of a how to, or how do I as a blind person perform this function. We can either impart some of our own, u m, expertise or find answers to questions that we may not have readily at hand.
Jonathan Wahl: 2:09
For people who are listening who may need help or know someone who does, can you give us that, that number that they can call?
Alan Lovell: 2:15
Yes, absolutely. It is 1-800-232-5463, and that number is manned Monday through Friday, 8:00 AM to 8:00 PM Eastern time.
Jonathan Wahl: 2:32
Alan, have you been seeing any themes behind the calls that have been coming in since all of the state home orders started?
Alan Lovell: 2:39
Well, yeah, we have , um, uh, of course we’re getting the types of calls that we generally expect. Uh, but a lot of the themes are that agencies are closed. Um , one of the most frequent types of calls that we get are individuals who have maybe suddenly lost their sight and are dealing with the fallout from that. How do I live or how do I thrive? I continued to operate as an independent person now that I’m visually impaired and you know, there are services in each district that provide a rehab services to those people. Um, but like us, they’re working from home or closed entirely. And so, you know, I , I still provide them the information that , um , you know, we’ll put them in touch with the right agency, but if they have immediate questions, then we try our best to answer. But those questions over the phone and you know, I’ve been actually known to provide instruction that they may provide. All right . As best I can over the phone, I’ve given somebody orientation and mobility tips or advice on a piece of technology they have. Um, so really trying to fill in that void , uh , during this time where everybody is in , um , you know, quarantine.
Jonathan Wahl: 4:02
Yeah. It’s really unusual time because usually we would connect them to a resource, but if those resources are closed, it, it makes it more difficult. You mentioned the O&M. In addition to that, are there other resources you’d be able to provide or other help or other ways you’ve been able to interact with people with this, you know, unusual interaction just because of everything going on?
Alan Lovell: 4:23
Yeah . And then that’s more of an individual basis. It’s the questions are so varied, but you know, you find someone who’s lost their income , um, because of being laid off. For example , uh, we search in their locale to find out what services those are available to them or we get parents calling , I know , yeah . For resources on how to keep the instruction going for their blind or visually impaired child. Uh, we linked them up with the , um, agencies that produce content for educational and that includes the American printing house for the blind that has daily as it’s available in the website . Um, so yes, we piece together information and I can impart that that either through a phone call or through an email where I just directly link them to services that are best geared for their particular scenario.
Jonathan Wahl: 5:16
And Alan , for people out there who are overwhelmed and are missing services, they likely depend on just any words of encouragement for them.
Alan Lovell: 5:25
Well, yeah, and we are all in this together. Uh , everybody has a different story , uh, in a different set of circumstances. And one of the things that we have found is that not all of us have a support group that’s really nearby. And some people are really on when, you know, when they’re isolating, they’re , they’re seriously isolated getting and that may not be by choice, they’re by themselves. Uh , so we have put it out there , um, that, that we’re available to talk , uh , and listen and provide an empathetic ear to the struggles you may be going with. You know, many people are at home on their own, but there’s also those people who while they are at home and on their own, have been dealing with a very recent vision loss. And if you think about being by yourself and suddenly not being able to see and relying on the remaining senses, you know, I , I can, I can encourage folks to tap in to the remaining senses and give them just some, you know, from one blind person to another, some pointers. Here’s what I do. Here’s how I do this. Maybe this will help. Uh, you know, here are some services that will keep you entertained. Here are some phone numbers , uh, that you can call to group chat with other people who have similar situations. Um, so there’s, there’s a lot of those and , um, you know, the various different companies have , uh, group conference calls and chatting available. They might put out a topic of discussion and schedule it for one o’clock , uh , on a Tuesday and then later that same day they might might have another discussion on a different topic. Uh, and so we can tap into the resources we have received, will search the internet, the internet far and wide, and um , find something that will hopefully , um, meet the needs of that individual. And um , but again, here I am and then I have a , my counterpart Melanie Peskoe and she works later in the day. She works from four to 8:00 PM and she also has her life experiences a very empathetic ear . Um, so if somebody needs to talk and just a talk or have questions to ask, that’s why we would like to hear from you. And that’s why we are here.
Jonathan Wahl: 7:46
Thanks so much Alan . It’s great knowing both you and Melanie are there behind the phone doing this important work. So we appreciate everything you’re doing and thanks for being a part of our podcast.
Alan Lovell: 7:54
Well it’s been a learning experience for us too. So um , I appreciate your help with getting the word out that we are here and we’re at home. I can’t promise the dogs won’t bark while we’re talking, but the good news is I’ve talked to other professionals with large agencies and their dogs are barking in the background too, so we have a little bit of fun with that.
Jonathan Wahl: 8:14
Dogs, kids, radios, airplanes, we’ve got it all. That’s right. That’s right. Thanks Alan .
Alan Lovell: 8:20
Look forward to seeing you back in the office.
Jonathan Wahl: 8:25
And as Alan mentioned, the connect center isn’t just the 800 number, it’s also three websites that are filled with really great information and resources for parents, teachers, families and adults. All on the topic of visual impairment took up the show notes for the URL . So each of those websites and the I&R number one more time. Next on the show, we have Scott White to talk about the NFB. Newsline Scott is a director of sponsored technology programs for National Federation for the Blind. Thanks so much for being a part of our podcast.
Scott White: 8:57
Thank you for giving me the opportunity to participate.
Jonathan Wahl: 9:00
You know, NFB news line is an important resource, but in in case someone listening doesn’t know about it, can you just briefly explain how it works and what it does?
Scott White: 9:09
Uh , sure. I describe NFB Newsline as an audio information source. We currently have over 500 publications plus a variety of other information such as TV listings, job listings, retail ads, to name a few,
Jonathan Wahl: 9:26
Right now information is so important. How are you working to provide information specifically about coven 19.
Scott White: 9:34
Okay. What we were able to do is we expanded our coverage of the States that have in it the news line. So a president of the National Federation of the Blind President, Riccobono authorized u s to have NFB Newsline in all the States in the country. So even the ones that you weren’t previously participating in program cause he feels that information on the Corona virus is so important f or everyone to have t hat access t o and also for the deaf-blind community to have it access to the information in braille, with t he connected braille display. So what we’ve done is we had a category on NFB Newsline that we have all the time called breaking news and this particular category we have a number of different websites that have current u p t o d ate information on anything from like an ABC news to CBS news, CNN, Fox, things like that, with 34 of those. And we s can those f or coronavirus and we displayed that in those articles that have that information. The secondary source we have that we added a few days later is statistics from Johns Hopkins hospital. So, a person, if t hey a re interested can go and see what the number of cases are that are in the world or broken down by state or broken down by country. And they can view all t he statistics with that so they can track that themselves if they wish.
Jonathan Wahl: 10:56
That’s great. There’s a lot of misinformation being spread online as well right now. Can you talk about why what you’re doing is important to make sure people have access to reputable sources?
Scott White: 11:07
Well, the sources that we’re using are the traditional news sources, but um, what we do is really we’re looking at providing the information to people , um, from the sources that we have and then they would have to make their own self judgment. We don’t make any judgments as to the validity of the source. Although we are going to go and, you know, pick what we feel or the credible sources. But a person would have to go ahead and evaluate the information that they’re getting themselves from the information source. Uh , we just want to make sure that we provide people information that’s out there. Uh, similar to like what we do when it comes around to the presidential election. We provide information from the candidates websites during election time and that leaves people to get more informed vote.
Jonathan Wahl: 11:54
Great. So for people listening now or people who know someone who may want to call into the news line , what are ways they can can listen to this?
Scott White: 12:03
Okay. Well NFB Newsline can be accessed in a variety of different methods. Uh, we have the traditional telephone, which if you still have a landline or cell phone you can call in and listen to it using the telephone we have NFB Newsline Mobile, which is our iPad/iPhone app. We have one of our most recent access methods, which is a skill that is on the Amazon Alexa device. And we have also something called web news on demand, which is like a secure website that persons can log into and just be able to be the text of the articles. And then if you have a Victor reader, second generation and other portable players, we had ways that would download the truth directly to that device as well.
Jonathan Wahl: 12:48
And if you’re listening in and want instructions to any of that, I will go ahead and put a link in the show notes. I know NFB Newsline has, has a portion of their website dedicated to all those different options. Scott, anything else you want people to know?
Scott White: 13:01
Okay, let me go ahead and give some contact information and tell people if it’s somebody that’s not currently signed up for the service, how you could go ahead and do so. Okay. Our toll free number that we have for customer service, which is open from 8:00 AM to 5:00 PM Monday through Friday and that’s East coast time. That telephone number is (866) 504-7300 again, that’s (866) 504-7300. My email address, if you’d like to contact me, it’s swhite@nfb.org, and a website. If you want to check out a number of publications we have , like I said at the beginning of our conversation, we have over 500 publications. Um, and I just gave you a little bit sampling of some, so to view the entire list you can go to nfbnewline.org and be able to be all those publications that we have now. Let me talk briefly about who is eligible for the service. So it’s going to be persons that are buying have low vision and a persons that have other print disabilities that prevent them from reading conventional newsprint.
Jonathan Wahl: 14:12
Thanks so much Scott. I really appreciate everything you guys are doing and for you taking the time to be in our podcast today.
Scott White: 14:17
Thank you and thank you for that.
Alan Lovell: 14:22
Before I end today’s show, I want to loop back around to the survey I mentioned at the beginning of today’s podcast. The movement behind the survey is called flatten in accessibility. The survey was an idea started by Aira and APH quickly jumped on board along with almost every single major blindness organization in the field. Here’s the idea. As a world scrambles to distance physically, leaders want to know if your accessibility has been taken into consideration. Are services you need for groceries and transportation, for example, still viable for you. There are two reasons all these organizations are coming together to gather this info. One, it will help them know how they can better serve you. And two, it will also help us know what barriers need to be broken down for the future. So if you want to take this survey visit flatten and that’s I N flatteninaccessibility.com, That survey will be open until April 13th and I’ll again have that URL in the show notes as well. That’s it for today, but we’ll be back next week. If you have any questions for APH, be sure to drop us a note at communications at aph.org. We’ll answer what we can in our next episode. In the meantime, don’t forget to look for ways you can be a Change Maker this week.
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Jack Fox (INTRO): 0:01
Welcome to Change Makers, a podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host…
Jonathan Wahl: 0:16
Hello and welcome to change makers, a podcast from American Printing House. My name is Jonathan Wall. I’m part of the communications team at APH. In this episode, we’re excited to host a really important discussion with leaders in the blindness field. They’ll talk about how they’re responding to COVID-19 and the lessons that we can all be learning right now as we work to provide important services that are usually not offered remotely. We have three guests today.
: 0:40
Rob Hair, the Superintendent of the Maryland School for the Blind, a statewide resource center that provides outreach and educational services for students who are blind and visually impaired. Amy Campbell, an education consultant for visual impairment with the North Carolina Department of Public Instruction. She helps oversee and provides guidance on services for students across the state with visual impairments. And Bryan Bashin , the CEO of LightHouse for the Blind in San Francisco where they provide comprehensive blindness services for people of all ages serving all of Northern California. Everyone in this round table was in the middle of a busy day at work. So you may hear a little background noise, but that’s only because they were working hard. Our moderator today is APH president Craig Meador, and he’ll be leading today’s discussion. Craig, I’ll leave it to you.
Craig Meador: 1:28
There’s so much going on across the country right now. A lot happening. And I imagine all of you have spent some time, if not all your time working from home as of late. So if you could, would you mind sharing with us how this is affecting your organization and your ability to serve your people?
Rob Hair: 1:53
All right . Well at the Maryland school for the blind. Um, it has been , um, of course , uh, you know, our governor, governor Hogan was one of the leading governors to announce a shutdown of the state or , uh , gradually shutting down the state. We closed schools , uh , statewide a couple of weeks ago. And even before that, the school, we were very, my team was way on top of developing a COVID-19 , plan for our school, diagnosing if a student needs to be checked and be sent home, you know, perhaps they have symptoms or something. So we wanted to keep everybody safe. We serve students with significant multiple disabilities all the way to students who are academically inclined. So we really wanted to be cautious with not knowing how severe the reaction of the virus could be. So then the school’s closed . We were closed for two weeks, but we’d never really stopped.
: 2:51
Our wonderful teachers and staff have been developing distance learning plans and ideas for educating their students, touching base with their families, making sure that they were okay and assessing the technology abilities. And so, and then as of last week, the state superintendent of education closed schools for another four weeks. It was initially a two week closure and then it was another four weeks. Uh, and so it began yesterday for distance education. Uh, in the meantime , I have mostly been at home. Most of our staff have been at home , um, today, however, I’m , uh , at the school I’m meeting with the U S army Corps of engineers for the possibility of this being an emergency treatment site or our campus as well as, and they’re just evaluating it and well, you know , who knows, hopefully we pray that we will not be needed. Um, but if we are, we , we want to make our campus available to , um, COVID-19 people who are recovering or triaging patients. We also opened up a preschool, a not a preschool, a childcare facility for children of first responders. And one of those first responders happens to be one of our parents already. One of our students that we currently serve will be in daycare here , uh, as, as the only daycare that’s allowed are for essential staff and um, uh , first responders. So it’s not been any less hectic than it is when this school is open for normal operations here at Maryland.
Craig Meador: 4:23
Thanks Rob.
Amy Campbell: 4:25
When I think about what we’re going through, the word tsunami comes to my mind. I just think that what we’re experiencing is just the tsunami and you know, what we’re facing on the state level isn’t any different than what’s happening nationally. You know, COVID-19 has impacted how we educate students, how we feed students and even, you know, how we are offering that supplemental instruction, you know, do , do students have broadband at their home and so at the department of public instruction in North Carolina, those are factors that are in the forefront that we are, we are dealing with, you know, not unlike anywhere else. I feel on many days that we’re flying the plane while we’re building it and perhaps others would feel that same way. At the state level, we are trying so hard to grab information as quickly as we can. I feel like information has gone from zero to 60.
: 5:36
Two weeks ago. We hardly had any information as of working with specifically students with , with visual impairment. Cause that’s, that’s our focus. And now you can go online and there’s a plethora of , of information that’s out there almost to the point where it can be overwhelming. And you know, at the state level we are trying to focused on that policy compliance factor. And so being able to stay in tune with what the department , um , us department of education is, is giving, whether it’s the question and answer , um, information out or the supplemental facts sheets, those are things that we’re trying to stay on top of so that we can provide interpretations for public schools. And , um, then trying to find ways to best disseminate that information and pushing it out and, you know, setting up what that protocol of procedures looks like so that we’re not duplicating efforts. And um, so the word tsunami is just what comes to mind. But I think that we’re doing as best as we can with it, with dissemination of information coming up with procedures. And as I said, it does feel like in many aspects, you know, we’re flying the plane as we’re building it . Thank you. Amy. Bryan, how about you? How’s this impacting you and your agency?
Bryan Bashin: 7:04
Okay, well thank you. And Craig, thank you for uh, putting together this roundtable and doing some deep listening. Uh, we as usual, California may be a little bit ahead of the game here. We’re now finishing our third week in lockdown. Um, it started with the San Francisco mayor , uh , just essentially shutting the city down and we’re , uh , we’re not a residential site , although we do have some shorter term residential programs and almost everybody that comes to us comes on some form of transit. And , um, I was thinking even before the lockdown, what a strange thing it is to ride a train every 90 seconds with 1,500 people in it. It looked like a bad Hollywood movie. So , um, when we , uh, when we seized face to face operations, we made the decision to continue , um, with all of our employment, all of our employees full-pay , uh, but they are now instantly turning the agency inside out to become , to do different things.
: 8:14
Um , we originated in three weeks, 23 online courses so that folks can from youth all the way on to seniors can gather together in English and Spanish, which , um , I was really proud of their nimbleness people. We had to deploy a lot of computers. People who didn’t have them at home, set up VPN systems , zoom and all of that. Yeah. The , uh, the , um , the bandwidth of people at the periphery is an issue. I convened a call of the California blindness agencies. We’ve had several weeks of these calls now and the CEO’s there, one said yesterday, she was distributing hotspots , uh , to people who needed them for zoom as they had much slower internet. Um, you can get those through tech soup for around $10 a month. So let me imagine that our agency is , um, our governing board is a half sighted, half blind. And our leadership team the same. And our employee employee , uh, demographics the same. So what we’re finding is there are some basic survival things that are not worked out. The blind people using Instacart and other online delivery services, those have ground to almost a halt. Um , why are they used to be able to deliver in two hours? Now, if you can get an appointment, it might be a week or two out. Um, so one of the things that we’ve done is we’ve started , uh , a caring call service. Uh , and 25 of our employees have volunteered for this. It was just systematically gone through the list of thousands of students, all the students except current active students because their own teachers will be doing the , uh , calls to those families. But the thousands of people who just finished working with us, or I’ve worked with us in the last few years, they’re getting calls, asking for our leadership, what do they need? What are the issues? U m, here’s a resource list. U m, and that kind of thing. So that’s, that’s been an active, Mmm initiative. And I have to say I’m following what they did in, in u h, Massachusetts with ( u naudible) who, u h, turned their agency in and out and that’s all they’re doing with their, u m, with their employees is just making a very intensive connection v ia telephone. U m, in the blindness community. The last thing I’ll say for this go round is, u m, we are at this NIB agency a small one, but we h appen to have a few things that, u h, are strangely demand. We make toilet tissue packets. Can you imagine what the value is of that? Right now? U h, last year we made 50 million of them. Now we can’t pump them out fast enough. U m, we’ve just gotten, u h, a line of disservice. D isinfectants, advanced hospital grade disinfectants and cleaners. Uh , and we’re in the process of, we’ve bought a new facility and we were in the process of expanding when COVID hit. So all of those guys are on emergency paths to set up emergency lines for filling, labeling, shipping, packing. And we’ve had volunteers from our agency just go there cause we can spread people out. It’s considered an essential service. And I was humbled to see that many of our , uh , directors and high level employees are right there on the line with everybody else packing, bottling because this stuff is going to prisons and the military and other high touch places that need to disinfect. So, Mmm , we’re talking about , uh , three shifts around the clock, kind of a wartime footing. We can’t keep up with orders. So , um , though it’s only around 20 people right now, we expect that to really explode.
Craig Meador: 12:19
Oh my goodness. So a thread I heard through all of your conversations is a high level of proactivity, which I commend you all on. This is a more conversations I’m having with members from the field. Uh , the more proud I am of the field and our ability to not just deal with the present, but kind of look at a, I mean, all of you mentioned this idea of reshaping practice, basing a somewhat of a new reality that , uh, I, you know, I think many of you were probably already moving into this , uh, area of more service via distance , uh, and also ways of being more productive and efficient with, with limited staff. But I think this is just turned to heat up on all of you and you’ve done a great job with that. So in this time of doing that , um, especially for those of you who are having people show up every day , how are you , what are you doing to keep people safe? How are, how are you , uh, moving the mission forward and balancing this idea of protecting your employees while still providing that service?
Rob Hair: 13:31
Well, at the Maryland school for the blind, we , um, of course closed school. Initially we had COVID plans of people keeping safe distance washing hands. We put signage up everywhere before we closed and we were sending students home or who had symptoms. Uh , very, very difficult to do that. But we felt it was the best thing to do for some of these students who just had some coughing symptoms for example. But now we’re in this distance, that environment, very few staff on campus , uh, some facilities work might be happening here and there we have , um, like I said, the preschool and we’re just, you know, observing the safe practices, washing hands and um, and then just responding to situations as they arise in your cleaning surfaces. Um, appropriately. And , um, we have had , um, some concern , um, a staff member that came back negative for COBIT, but who was concerned that , uh, they were exposed to COVID and or they were sick, had symptoms.
: 14:34
And so we had to go through a whole procedure of like, okay , so how far, you know, when do they express symptoms, when will reopen ? Could there have been an exposure to staff who were well by, we were still in session. So we’ve had to think through all of these pieces. Um , even though now we’re , we’re out of in the meantime, while we have staff who are doing other jobs now than they were used to doing, we have some staff that are delivering food to homes like from the local pickup, you know, for families who have students with very complex needs, who need help. Um , we’re helping to drive , uh , food from like the school, a facility where in their local community to drop it off at their home. So we’re dropping off those things safely and at the front door we’re not actually talking to students in person and parents in person, but only via phone and through like the Zoom and all the other pieces that we’re doing in terms of the distance education. So we’re taking all the precautions that we can and just using good common sense.
Craig Meador: 15:36
Thanks Rob. Amy, similarities, or are things different there for, are you all in North Carolina?
Amy Campbell: 15:47
In North Carolina? I think that we have seen a real gradual process come, come over the state, if you will, at the very beginning, you know, at least the support that was being given out through administration of the department of public instruction. I feel like that we have provided that seamless support to our school districts. Uh, we are all employees are, you know, we are working remotely. We’re participating in a lot of virtual meetings. Our priorities are shifting by the hour depending on what the need is on the school district level. Um, a lot of creation of resources and online repository is just ongoing at a really fast rate with school system here we have had students have been home for almost two weeks and the entire state has been at shelter shut down now for only if a few days.
: 16:56
So we have a kind of shows where we are in the stage compared to, you know, what’s happening over sand on the West coast in California. But our students are facing a variety of situations depending on where they live, some school systems because it’s a local decision how to handle things. Um, some school systems have provided that supplemental information resource, that alternative learning to students. Some schools have jumped in already and started remote learning. And so it all depends on where that, where the students are located and what that looks like for them. I know that we have bus drivers that are working every single day, even just delivering meals to different locations so that students receive, you know, meals that they need, but I think that we are functioning under, it’s hard circumstances, but I think that we’re sub functioning seamlessly in providing that support as best as we can and trying to communicate that level of flexibility. That was one of the words that came out from the department of ed as we’re trying to continue to service students with disabilities. Having a level of flexibility that at first there was perhaps some notion that remote instruction wouldn’t be permitted and one of the information sheets that came out in March 21st the supplemental fact sheet was able to set that aside and say, no, that is not the case. We have to provide a free and appropriate public education for students. We have to be helping teams make decisions about what is reasonable for a student, what is appropriate for a student. I think what’s so hard for teachers right now is that we want a black and white answer. We want something concrete, a one size fits all and it’s not possible for the students because who we serve as so unique, what might be okay for one student might be completely different for another student. So there’s so much of a range that I’m seeing in that service delivery for students. Um, if students are receiving that remote instruction yet,
Craig Meador: 19:32
The intricacies, you know , is listening to what you’re saying there. It just makes my, my head swim , uh , and kind of different types of questions I want to ask off of that, but I, I’m going to try to stay, stay the course here. Bryan, tell us a little bit about what do you guys are doing for protection of employees and staff, but still fulfilling the mission the ever changing based on what Amy is saying is saying the ever changing mission from day to day: it kind of morphs.
Bryan Bashin: 20:05
It does. Um, you know, there’s the question of who do you follow. And as a former employee of the us department of education, I’m sad to say that that agency has really not distinguished itself with looking for exemptions for students. Our board is writing resolution against that now , uh, during the covert period , um, or the federal government. So we’re following , um , we’re following mostly , uh , governor Newsome and the California officials and we’re tying our actions to the government, local government , um, advice [inaudible] but there is a rich soup of how to stay safe here physically. My is in , um, mental health. Um, employees are profoundly agitated. I think the idea when I sent the memo out three weeks ago that we were closing, I went around and I found some employees like sniffling at their desks, utterly shaken. Why? Because , um , in this age for many of our employees work, work is the place, you know, you have family and you have maybe a , you know, a community outside, but work, we are a mission led organization and people have gotten their sense of purpose through work and all of a sudden that was exploded.
: 21:31
And there are a number of people who came out to the coast and are living in small apartments and you know, with other people to make ends meet. And all of a sudden that w that’s not tenable when you’re there 24, seven and you don’t have, you know, a nice office to go to and colleagues and all that. So mental health really is , uh, important for us. And when I’ve hold our directors after the first week , uh , and ask like, what were they doing in terms of programs and this and that. And they did the re they said the requisite things about programs and online and all that narrow things. But they honestly, what I can say is employees were checking in with each other, each department caring with each other, finding ways to have , um , get togethers, both virtual get together as both during business day and afterwards. I think we are a private agency, so there’s some kind of maybe fear. These folks are not government employees who can look for their 30 years on a pension. And so I, I think they’re uniquely sensitive to what’s going to happen as they look at these mass layoffs center that are coming. And so the, the thing that , uh, we need to do is to reassure people and connect with each other. Yeah. The zoom and the zoom video, weirdly enough in a blindness organization is useful. But for instance, last night I had a watch party and we did shared screen zoom. Mmm . And we watched the Netflix movie Crip Camp, which I would really recommend it . It’s a narrowly about , uh, a camp in New York state in the 70s , uh , for people with all disabilities but widely it’s about section five Oh four, and then the ADA, fantastic documentary. But we watched it together and we had bonding that lasted until like 10 30. here. We were in each other’s virtual living rooms. These are my directors of camp at directors of rehab and some architects designing our rebuilt , uh, uh , camp for the blind and all of that. And I, that’s the real name of the game going forward. Cause I think you’re probably gonna ask about how long is this going to go on and I’ll save that to the next round. But in the interim , um , I can’t stress enough. All we have is the team, you know, we have buildings and we have this and that. All we have is the team and we’ve got to keep it together.
Craig Meador: 24:06
Thank you Bryan. That leads beautifully into this next question in the but this idea of support , um, how and and uh, so I would like to have a Rob and Amy respond to that, to this. Uh, so what are you doing for support of, of your, you know, originally the question was going to be framed as how are you supporting your parents and students? But I, I want to pull back on that and ask this question about your staff, the people you work so closely with. How are you providing support to them during this time of unknown or uncertainty?
Rob Hair: 24:44
As far as support at the Maryland school for the blind, it’s , um, we are , we’re continuing to develop and articulate our plans for how we’re supporting each other. It’s just been evolving through all of this. There’s been a real, there’s a school bell by the way, excuse me. Um, this is a school. Um, we , um, have been really upset about people’s emotional States and whether people are getting sick and we’re concerned and trying to keep in touch with each other. So there’s been a lot of interaction informally, but like the idea that watch party, that’s something that we’ve talked about we haven’t done yet and I’m gonna make a note of that. A movie idea that’s a really great idea for especially a first school like ours. Um, but having watch parties, we set up a Facebook community group for the staff , um , a community group for the parents as well as for the students so that we can do some fun activities online with each other.
: 25:42
Maybe it’s , um, you know, posting videos about what you’re doing at home right now or, or something that just kind of fun , fun activities. And then , um, more formally , we’re, we’re uh, doing zoom campus-wide meetings , um, uh, starting actually the first one is tomorrow. So we’re going to have nearly 400 people on a , on a zoom meeting to talk about the plan going forward and the , uh, the , the continue , uh , continuity of learning plan that was just released this week , um, to parents and to staff and to help iron out any questions , um, but providing the support for people to feel good about doing their jobs. So we are also very sensitive to the fact that people are at home with their babies and their children and they’re , you know, trying to do distance education, but they’re also, they have a three year old who needs their attention as well. So it’s, it’s a complex situation that we’re in and we’re all stressed out. I know, I know myself and other that I’ve talked to were like up late at night worrying about family and friends and ourselves and going to the grocery store kind of feels radioactive nowadays. You don’t want to touch anything and you’re trying to get groceries for your family who keep eating no matter what you say. All the bread has gone in two days. But um, yeah, it’s an evolving plan. I’m , I’m looking forward to hearing other ideas from our colleagues in the field.
Amy Campbell: 27:09
I like what you had to say, Rob. Um , just want to echo the word evolving that evolving support. Um, I think that the support that has been trying to be extended to not only the school districts but even more specifically to teachers of the visually impaired has been just so heavy on my heart and how that’s been done. And it is evolving of how that is, you know, how that’s being done. We have, you know, in a formal sense we have a chain of command that’s, you know, a process of how we want to push out information because there is so much being put out rapidly. And as I’ve mentioned before, it can be so overwhelming. How , how do we know what to tune into? Also happy, discernment that, discernment of the messages that we’re hearing and what we’re tuning into. But formally we push out information through listservs and through having webinars a couple of times a week just servicing those leadership roles within the district. But and so that’s evolving and it is complex. You had mentioned that word too . It’s such a complex situation because we are all serving such multiple roles and as I’d mentioned at the same time and um , and as I mentioned before, we’re, you know, building the plane and flying it all at the same time and having that level of grace for ourselves I think is really important. As you know, trying to keep up with the day to day support that’s being provided, but then also maintaining the household. You know, I have two sons that are doing remote school. I have a husband who’s working remotely and I have a dog who thinks that this is all for her. She’s excited the only member of the family. But all of this is happening simultaneously, informally. Trying to really be able to convey , convey that compassionate , um, communication to teachers is really important.
: 29:30
I admit I’m not serving students directly. I’m well aware of a lot of situations that is heavy on my heart and I try to keep in communication with those teachers. I think it’s important at least to say that we’re thinking about them and we’re here to problem solve. None of us have all of the answers. One of the things that I really love that I think has been that I have seen happen that I feel that is so supportive to our teachers, and this is only one example of many that are out there, but Texas school for the blind has just initiated a coffee talk for teachers of the visually impaired to come together on twice a week in order to have that connectiveness and that is a word that keeps coming up in my mind as I’m trying to also think of what’s good. The good that’s coming out of this, well, some of the good that’s coming out of this is the connectedness that we are reaching out to each other. I think in a field of visual impairment, we’re predominantly feel like we’re islands and I feel less like an Island now because I feel that I have more opportunities to connect with other professionals that are in the field. And so that example of the coffee talk is just, you know, the first thing that pops into my mind that I think that is supportive, that also can feed into that mental health, that stability, and just that can help give us peace of mind that we’re not in this alone.
Craig Meador: 31:11
Thank you, Amy. Um, yeah, I thought the TSBVI with that coffee that I was just a stroke of pure brilliance and it’s just like such a wonderful, wonderful idea that they’re doing that. Bryan, any last thoughts? You kind of kicked us off with support and support measures you’re building in, but I want to give you a chance if something else popped up there, you can speak to that as well.
Bryan Bashin: 31:33
Yeah. Um , I like what Amy said about connectedness. I want to just underscore communications too. I know that , um, a number of employees who are blind at the LightHouse have formed , um, uh , a Bay area. It’s, it’s not some formal thing. It’s a Bay area social meetup. It happens every day at four o’clock on zoom. Um, and there’s, I dunno , between 50 and a hundred participants every day , just blind people in the Bay area for social support. That’s a really powerful ad hoc thing and many of our employees are participating in that. Um, there are, there are a number of things we’ve done on the communication side. Like we have a , we have a weekly and a monthly newsletter that goes out to 15 or 20,000 people on our mailing list about what we’re doing, certainly. But a couple of smaller things. One , we have an internal email that goes out every morning called lighthouse lately, lighthouse today and now during the closure, it’s a lot of support , uh, gossip , um, just, just personal things that bind us together, details about people.
: 32:46
We’re sort of doing an internal , uh , kind of seven questions every day about an an employee, you know, so we get to know each other better and so that, that binds us together. And then , um, I S I write a weekly , uh , lengthy piece to all staffers just like where we are, what’s it feeling like, what are we hearing? Um, and at the end there’s usually some lighter things. It can be anything from , uh , musical parodies to , um, uh, films and other things people might want to just wash during this period. Next week we’re doing our all hands meeting and um, in addition to the usual way we do it , um, our chair of our board of directors who’s now , uh, Dr. Sharon Sachs , she’s going to come on just for reassurance to folks that we’re in this together and we’re inventing together. And I think that connectedness, if you can, from your governing board and on down, people seem to be hungry for it far more than they used to during normal times. So I suggest those as well.
Craig Meador: 33:56
Excellent advice. Well, all of you have talked about change. All of you are doing things different than you were three and four weeks ago. What do you think the lasting impacts will be? A good or bad? I mean, I’ll throw it out there. I think there’s definitely some silver linings to all this. Um, we’ve been trying to focus on those at APH, but what we’ll look for your agency or for the field, what do you think those changes, those lasting changes will be as a result of COVID-19?
Rob Hair: 34:23
Well, speaking for me, I , I see ’em as the, as our other , um, let’s move on talking about altogether that there’s just much more of a bonding happening among staff and I think it’s going to deepen relationships. I mean, through, through trial and to difficulties. Um, I think it brings out the best in people a lot of the times. And, and it’s so great to see people just doing so much work , um, trying to make things work and trying to keep community going and trying to serve our students. Um , when we all, we don’t want to see them regress or not have any educational stimulation or a lack of food. For example, school food, like I was mentioning, like dropping off food for those families that can’t get out to the food distribution locations. I think that’s one piece, the deepening of relationships. But then I am really excited that we are, we’ve kind of jumped into the distance learning piece.
: 35:21
I think that there’s something there. I remember a Washington state school for the blind being the, you know, the real leader in that field 10, 15 years ago. Uh , and I was trying to emulate that when I was at South Carolina school for the deaf and the blind. Um, but now we’ve really, the, is there, the ability is there. I mean, of course there are equity issues and some families don’t have access to technology or to the internet. Um, but I think it’s helped us all to learn new tools that could potentially help with homebound students and students who are maybe unable to come to school because maybe they went home sick on Tuesday and they can’t get transportation back on until, you know , the next week. Um , or whatever the circumstances that they’re , there are new tools that we have in our tool box to help continue to engage and educate our students. Um, and not necessarily always in person.
Craig Meador: 36:13
Thanks Rob . Amy what are your thoughts?
Amy Campbell: 36:16
Well, to be honest, I would be remiss if I didn’t at least just share that , um, the concerns that I have in that I think that there are some real concerns about accessibility. And Rob you had mentioned about just equitableness of learning that we need to keep that on the radar. I do believe that because there is so much talk about accessibility, we can use it to our benefit. Now. I think we have, I think yours are more open and willing to listen , um , and problem solve that. Uh , I think that there is concern with if anything could possibly change in the next year in response to, you know, possible IDEA waivers, you know, that’s on the table and that’s in the back of my mind. Um, but I like what you mentioned, Craig, about the silver lining. That was a great word to use.
: 37:20
What is the silver lining? And so one of the things that I had mentioned before was they had used the word connectedness. And I think that that is written really rich for professionals. And I know that just within the past week and a half, the number of opportunities that I’ve been able to tap into have been very meaningful. But I’m also seeing this connectedness for students to connect with each other, from state to state. And I love that. And so this gives the segue to how these students are connecting. It’s because of that remote learning platform. And so I think that that can be a positive and lasting impact as we think about that use of remote instructional methods. I’m going to steal your words to Rob where you talked about the toolbox. We always have to be adding tools and this is where I’m going to be really honest too. I’m an old soul and change is so difficult for me and, but this really stuck with me. Craig, you just APH last week you and Jonathan , you launched that first podcast , um, of the , um, change makers. And it made me think because Craig , he challenged, and I’m going to say take it personally, you challenged me personally to examine our, my practice and to view the landscape that we’re in right now as an opportunity and how can we build on these new skills? And I love how APH partnered with past illiteracy on this with the Excel Academy. So this is where I’m looping back to the students , um, connectedness. Being a part of ,just an observer for one of their sessions last week that was on social skills and seeing the students interact and have conversations and learning how to access the accessibility of things and learning. It really opened my eyes. And as long as we are mindful of the least restrictive environment for our students in our decision making, I think that this can be a silver lining where we are actually proving and showing that we can work through this and that this can be a viable learning opportunity and way to reach some students that may not be, it’s not a one size fits all, but there’s so much more value in my eyes that I have seen where previously I couldn’t go there in my mind because I embraced that one on one instruction time with students. And in my mind I just can’t see how it could be better than that. I like how I’m growing professionally in , in, in thinking about how this could be a game changer for our students. So thank you to APH for um , planting those seeds in my mind and that partnership of that Excel Academy. I really think that it’s a game changer and I’ll close with this too . One reason why it is so powerful is because you’re giving teachers of the visually impaired real life role models of how to deliver this instruction effectively. So I love that and I love couraging my teachers to tap into that in order to expand. You know, there are thoughts of that instruction.
Craig Meador: 41:22
Thank you Amy. Ryan are the lasting impacts?
Bryan Bashin: 41:26
Ah , one lasting impact is I’m going to find out more about the Excel Academy cause I don’t think some of our teachers know about it. And thank you Amy for bringing that up. Every a silver cloud may have a black lining and I’m worried about some of those things are , you know, what we’ve found is a , is based on the demographics of blindness we serve all ages. We know that only 5% of blind people in the United States are in the K through 12 age range. So the 95% of people who are not in K through 12, I’m worried that this , uh , sort of exuberance of Zoom and remote instruction we know who we’re seeing, but we don’t know who we’re not seeing. And that figure I think is enormous and I’m afraid of a kind of digital apartheid. Um, as we have blind people or newly blind people in their forties and fifties and sixties of working age and are just left out and are isolated and don’t have the resources to , um, do the kinds of things that people who have had the privilege of education and all that or have been blind long enough to acquire them , uh , have. And so we’re, we’re really wrestling with that. Um, because I, I think the field has not really addressed those left out. Um, I also, and worried a little bit about just our own internal structure as this thing may drag out. Mmm . I’m looking at a lot of employees who are learning that , um, they , they don’t have a lot to do and they don’t have a lot to do and won’t have a lot to do. And I think that effect over time might be kind of corrosive when we come back . Um, our agency is based upon showing up and forming community, whether it’s , uh, you know, youth classes or where the weekend and our dorms are , whether it’s camp in the summer or whether it’s , uh, our group employment job seeking thing. Um, that has been a hard tissue to build and it’s been really against the grain of one on one instruction that departments of rehab tend to favor.
: 43:47
I’m just worried that the idea in our culture of showing up, of taking the train of using transit, all of this stuff now where people, people will ignore it , normal times, we’ll find all kinds of ways not to show up now w maybe looking at a year or two of people just being fearful of being out in the world. And that leads to a kind of instruction stuff that’s in (inaudible) to me, cause it’s the warm connected, encouraging forming that , you know, social formation. Um, that’s, that’s really what I think is at the heart of rehabilitation for people who are blind or newly blind. And I don’t think that we can zoom our way out of this. And I , I think , uh, you know, my own staff is congratulating itself with 23 online classes. I think at best it is a distant and cool kind of connection and that’s what I worry about for the longterm .
Craig Meador: 44:52
Those are some sort of sobering thoughts. Um, and all honesty, I probably have not allowed myself to go there as much as I may should have perhaps. But the , I think those are , are good reminders, Bryan, that there is a downside. I mean we’re, I think sometimes in leadership we’re trying to take a bad situation and, and hold people up and, and we, we really want to promote what we can grow a , you know, it’s that idea of never waste a good crisis. Right ? There’s no such thing as bad pain as long as you learn from it. Uh, the, those kind of old mantras and cliches, we have plastic along the walls of our offices, but I, I think your caution there is something to. You’re right. It is a lot to , especially concerning our students. It’s , uh , so many times we are trying to are students and adults , uh , in rehab and , uh , we’re trying to encourage people to reach out and grow and take chances and get on that bus, get on that train, make that trip, get to the supermarket , uh, because you need that for growth and you need that for , uh , to be alive in this world, and we have just basically reversed that message and have told everybody the best thing you can do is don’t go to the supermarket and don’ts . Don’t get on the train, don’t get on the bus. And hopefully that’s all, all temporal. But I think we need to be mindful of , uh , we, we’ve got to find those successes , uh , utilize them, but also , uh, uh, be mindful. I love that term, that digital apartheid that, that could happen there . Uh, the corrosiveness of action or inaction and also could result from us. We are getting close to the end of our time, but I, I just want to give you all a chance to, to , uh, give us some closing thoughts. I appreciate all of your wisdom. Uh , I appreciate the situations you’re all going through. Some of it’s very similar, some of it’s very different. Um, but , um, you know, when I was, when Jonathan asked me to find three voices in the field, I felt like the three of you represented a fantastic cross section. And , uh , so I’d be remiss if I didn’t give you an opportunity to give those last few words of either insight, wisdom, encouragement or caution, whatever, whatever, however you want to play it. I’ll just let you , uh, uh, send us off with that and then we’ll wrap it up.
Rob Hair: 47:27
Yeah. When I think about , um , my biggest takeaways from , um, this really kind of horrifying and , uh , strange new world that we’re in right now , um, I try to think about what’s, what’s important right now. And I think what I’ve been trying to emphasize with the staff, even though it’s been, you know, amazing to watch people come together and , and create new ways of doing things and um, teaching our students and trying to be helpful in ways that they can be , um, during a time when we can’t really see each other and be social or we have to be socially distant. I actually don’t like the word socially does. I think it’s more like physical, distant, but socially connected. And I think we should keep those social connections. And um, I’ve been trying to encourage my staff and also those myself too , in the midst of all this, take care of yourself, that’s, we have to take care of ourselves. A lot of us, I don’t know about anybody else, but the first couple of weeks and I , I’m still having trouble sleeping. I’m so worrying about my friends and family and my students and I’m waking up in the middle of the night thinking about, you know, illness and you know, things that need to be done and what are we going to do. And I, you know, but also trying to take care of myself, trying to eat right. You know, the first week I probably didn’t need as much, you know , all the right things or drank all the right things all the time. Uh , but now I’m really trying to like exercise and eat more healthfully and I’m , I’m encouraging my staff to just take a, take a step back and breathe and take care of yourself, take care of your family and take care of your children. Um, because this is, as you said, temporal, it is not going to be here forever. Um, uh, and we’re going to get through this and that’s one of my, I close almost every email. We’re going to get through this together.
Craig Meador: 49:20
Thanks Rob.
Amy Campbell: 49:21
I like how you captured on um, Rob about the self care and I know that um, our exceptional children director at the North Carolina public instruction , um, always man manages to circle back to that self care point these past couple of weeks . And it puts into my mind the picture of when we’re flying on an airplane and we’re given those instructions of if an emergency should happen and the oxygen masks, you know , come down that we are first supposed to take care of ourselves. We’re supposed to put our own oxygen mask on first before we help someone else. And , um, I know my sister has directed me and reminded me of that to take care of ourself and um, because then we’re not good for, you know, being able to help anyone else. So I think that self care is really important and I think that the other point to highlight on is never say never.
: 50:34
And um, as I mentioned before, I perhaps wasn’t the most open minded previously in thinking about remote instruction , um, remote services for students with visual impairment. And I’m going back to again, that podcasts and , and stealing some of your words. I hope it’s okay, Craig, but it just wasn’t meaningful to me where you gave that encouragement about don’t abandon these interim methods of instruction and ways of servicing people that we have to have in place now don’t totally abandon that when our life returns to normal speed. And I think that it never say never. It, it puts into my mind as, you know, how can a hybrid model of education be utilized for some of our students? So , uh , I think those are things that are lasting in my mind that I hope that I can continue to carry that through until we come to the end of this road and be able to look back on it mindfully and problem solve of how we can make it even better when we’re in a better, you know , a better place.
Craig Meador: 51:56
Thank you, Amy. Yeah. Feel free to steal anything. That’s absolutely fine. Bryan. Final thoughts?
Bryan Bashin: 52:05
Yeah, you know, I, after the first few days I noticed that , uh , not having to put a coat and tie on and go through the morning commute and back, that’s uh , that liberates maybe 15 to 20 hours worth of , uh , time. And I’ve been seeing among my circle of friends and family. That we are taking the time to have longer conversations and catch up in deeper ways with family members and others all right across the field. Um , the transactional quick, get it done kind of communication is , is now being enriched with a much deeper kind of check in sort of like we’re doing now. Craig , I mean this chance to go deep and ask questions like this , um, I think would not have happened otherwise. And so I, I , I’ve been thinking about this period that we have now and probably will have for some months. Um, we could, we could frame this as a kind of , um, sabbatical where in a sabbatical you get to get away a little bit from the day to day and get to go deeper and I think the field is, has always and always will be right for reconsideration and re-invention and we could never, I could never rest my team to ask these questions when, when life is buzzing and they’re 200 people in the building. Um, now this is an opportunity to go deep and maybe when we come back, think about reorganizing, we doing dropping some things that frankly were marginalized beforehand. So , um, I, I just see this as an opera, a once in a generation opportunity for us to really consider how we might do some profound change.
Craig Meador: 54:05
I want to thank you all again a lot to think about and I appreciate your insight . All of this.
Jonathan Wahl: 54:12
Thank you to each of you for being a change maker in your region. You certainly have left us with a lot of things to think about.
: 54:18
That’s it for episode two, but we’ll be back next week. If you have any questions for APH, be sure to drop us a note at communications@aph.org and we’ll be sure to answer what we can in our next episode. In the meantime, don’t forget to look for ways that you can be a change maker this week. Coming up next week on Change Makers. How the APH ConnectCenter is connecting people to important resources during this pandemic information about a survey being launched by leaders of our field to help them better meet the needs of people with visual impairments during challenging times. And we’ll hear from NFB Newsline about how they’re providing important information on COVID-19.
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Jack Fox (INTRO): 0:01
Welcome to change makers. A podcast from APH. We’re talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here’s your host…
Jonathan Wahl: 0:15
Hello and welcome to the very first episode of Change Makers. A podcast from American Printing House. My name is Jonathan Wall. I’m part of the communications team at APH. We’ve been working to launch a podcast for a while now, but with everyone working and learning from home, we thought this would be a good way to connect with you. Provide resource is and maybe even prevent some boredom at home. What you hear over the next few weeks won’t be the final format for this show, but we do hope it will be helpful for now. Today we’re talking about COVID-19 and how APH and the BVI community is responding. We’ll hear from Jim Kreiner, the Director of Customer Service, at APH of ordering during this crisis and then from Charlotte Cushman with Paths to Literacy, she’ll tell us about some great online resource is, but first, APH President Craig Matter has joined me to talk about how the coronavirus is impacting our field and what we can learn from it. Thanks so much for joining me, Craig.
Craig Meador: 1:07
Good to be here.
Jonathan Wahl: 1:08
Let’s go ahead and just start broad. What do you want people to know about how the Corona virus is impacting APH?
Craig Meador: 1:15
This is uncharted territory, for I wouldn’t say just APH. But I think most of the educational field that works with students who are blind or visually impaired and that is so much of the work we do is not virtual. Most of that is done. Ah, you know, face to face with a student, one on ones, small group settings. And so you know, APH is no different. Most of the work that we’re doing here, the creation and preparation of materials that providing of service is is is done in fairly close contact with others. I think as a field, we are all faced with this reality of how do we accomplish our missions. How do we get out there and meet the needs of customers and meet the needs of students within the school systems in an effective way, but doing it very, very differently, and I think right now I can speak for myself. But I can also speak for the colleagues I have in the field. We’re all in a scramble, so to speak, as we try to marshal resources, but there will be a definite time of trying on of new techniques and using technology and figuring out what works and trying to, ah, determine the efficiencies of of new technology in trying to use that as a problem solver moving forward for all of those who are out there experiencing this new reality. Right now, my advice to you is, be in communication with each other. This is a time when we really need to be connecting with other professionals in the field and asking questions and looking for solutions and relying on each other to arrive at the best possible solutions for the people we serve.
Jonathan Wahl: 3:08
Craig. There are a lot of students at home right now. This includes students who are blind and visually impaired, who have been removed from needed resources. How is APH working to help?
Craig Meador: 3:19
This is a great question, Jonathan, because this is an exciting opportunity. First I’m going to be very honest. This is a challenge, and this is really a challenge when we start talking about our students that have multiple disabilities and multiple challenges, as opposed to the student who is near at grade level but just needs some level of assistive technology. And so that’s the challenge from APH’s perspective is how do we get the tools that the student may be using in the classroom to the family in that home environment? How do we make sure that the parent has everything they need to work through those IEP goals; and IEP goals, the individual education plans that have been developed for those students? And how do we play a role? So when I talk about this as being a challenge, is this time right now in COVID-19, positions the field, but also positions [inaudible 00:04:55] speak towards APH. It’s a huge paradigm shift. So this new paradigm we’re thinking is could you create, and this is not saying you don’t need skilled instructor just because you do, you really need skilled instructors, but our goal is to create a product that what happens if you had to deliver a product to a student in the absence of having that skilled instructor? Would that product become a useful tool or would it become a doorstop? And our goal is for that to become a useful tool. So that’s the new mental shift we have to get around at APH is really in the whole design and development process of our products. And not only that, but in the access to video, the access to tools that will help people use the product most effectively.
Jonathan Wahl: 5:51
This virus is putting us all in situations we never expected and It’s unusual. You’ve been in the field for a long time. You were a teacher. What is your advice for how we continue to make a difference while dealing with all of these new hurdles?
Craig Meador: 6:04
I think we all need to examine our practice. Whether we’re APH or whether we are delivering information in a traditional way, I think this is a great opportunity for the field to address a couple things. The first one is we have had for 40-plus years a teacher shortage. We are all aware of that. We know that all across America there are students that cannot get the level of instruction they needed because a teacher of students with visual impairments is not available in their area, in their region, in their state. We know that students aren’t receiving as much braille instruction as they need or as much orientation and mobility instruction as needed. Now, you take COVID-19 and you’re saying, “All right, not only we are short on teachers but now your students can’t come to a central location for instruction.” And you as a teacher can’t go visit that student in their home. So this is two challenges. One is how do we provide that level of instruction that used to be one-to-one, hand under hand, close proximity contact, real time feedback to a student, and how do we do that when there’s fewer teachers to provide that same level of service? This provides a challenge for our field, but it’s also an excellent opportunity. It’s forcing us to look at this idea of shortage and scarcity, but look at it from a very proactive model. How can we make sure that students get the level of instruction they need, I will say, in a less than traditional way? And so a lot schools already have begun experimenting with Zoom classrooms. I think it’s time to move that to a forward approach and maybe make that a primary delivery system. COVID-19, this idea of being shut down, kind of forces our hand there, but I think this may be the way forward to serve more students. The biggest downside in servicing kids for most teachers of students with visual impairment is the drive between students. It really is. And while I’d be the first to say that rarely can you replace the face-to-face, person-to-person meeting with a Zoom meeting, I think that the reality is is if we really get our skills down and we figure out the most effective instructional models and how to work with our students with varying needs, using Zoom or Skype or some sort of distance tool, we can actually serve more kids. Now, is that the most ideal? It depends on the student. I think for some it is, but for some, probably not. We need to look at it on a case-by-case basis. But this practice we’re all engaged in right now that we’ve been forced into, this may become the new normal for a lot of our kids, for instruction for a lot of the work that we do. And my challenge to everybody in the field is embrace this opportunity to learn this and really build your skills. And then when sanity returns and we all get back to this level well of being able to be in close contact with each other, my challenge to everybody would be don’t necessarily revert back to your old practice. Or if you do revert back to your old practice, don’t abandon the new skills that you’ve learned. And I would really challenge everybody to look to see if you can’t create some sort of hybrid model where you can put these new schools and new technologies into play in hopes that you actually reduce some of your travel time and some of your time lost on the road, and would then in essence be able to maximize your teaching time by meeting the needs of more students. Sometimes, these tough times help us find the way forward to other issues. And I think that this is just a perfect opportunity to do that.
Jonathan Wahl: 10:59
Tough time, but at least a blessing in disguise. Thanks so much Craig for taking the time to talk of me today.
Craig Meador: 11:05
Happy to do it.
Jonathan Wahl: 11:09
So many students are learning from home right now and may need additional resources, so I’ve asked Jim Kreiner, Director of Customer Service at A phto join me to talk about how we can still help during this time. Jim, thanks so much for being here.
Jim Kreiner: 11:21
Good morning, Jonathan. Great to be here with you, Jim.
Jonathan Wahl: 11:24
How is your team working with customers right now during social distancing?
Jim Kreiner: 11:27
Well, Jonathan, we have all entirely successfully transitioned to working from home. So I’m excited to say that we are still here, able to take your calls by phone and e mail and help you in any way we can.
Jonathan Wahl: 11:39
What about shipping products? Is that still something we can do right now?
Jim Kreiner: 11:43
So, Jon, from the great news is that yes, we we’ve got a small shipping team and they’re working separate shifts. And following all those social distancing protocols we’ve all heard so much about, the big difference is if you have a package shipping to other a school or a government agency because so many of those air closed right now, until we hear from you, we’re gonna hold on to those shipments. We are still happy to take your orders. Get them in right away.
Jonathan Wahl: 12:08
Good news. What about some of the products in development? We have several things coming down the pipeline. Is this going to be slowing them down at all?
Jim Kreiner: 12:16
Well, Jonathan, like so many things these days, it really depends on the product. Fortunately, our project leaders are still able to work from home, and so new product development is continuing with some of the products that were closer to release are being held up in China, including two of our new braille devices. We expect them to still be available sometime this summer, and we’re doing everything we can to get our APH products into the hands of the kids and consumers who need them.
Jonathan Wahl: 12:39
Jim, it’s all helpful information to have. Is there anything else you want customers to know, right now?
Jim Kreiner: 12:44
Yeah, Jonathan, I just wanted to let you know that even though our physical doors are closed, it doesn’t mean that we aren’t here for you. We’ve been working really hard to create educational resources for teachers and students to use from home during this time. There’s great professional development opportunities. There’s our ExCel at-home, online learning academy. You can find all of those on our blog. We’re hosting webinars and now we’ve got this podcast. It’s a great way to communicate with everyone. And just as a reminder, our APH connect center is still open as well. That’s our information and referral service hotline. It helps individuals with visual impairments if they are struggling to find resources and support in their own community. And it’s just another way the APH is here to help.
Jonathan Wahl: 13:25
Yeah, Jim and the ConnectCenter Web pages also have a lot of great information and blog’s as well. I’ll be sure to include that information the podcast description and also include information how you can contact our customer service team if you have any questions. Thanks so much, Jim.
Jim Kreiner: 13:38
Fantastic, Jonathan. It was great to be here with you this morning, even if it was just virtually.
Jonathan Wahl: 13:44
On of the ways APH is Working with partners to help during this season of social distancing is by working on the ExCEL Academy. This is a group project that we’re excited to be helping with to tell us more about it. I’ve asked Charlotte Cushman and join us. She is a change maker with path to literacy, and she’s been doing a lot of work to allow online learning daring social distancing. Charlotte, thanks so much for joining me.
Charlotte Cushman: 14:09
Well, thanks so much for having me. I’m really excited to be here today. I wanted to give people who don’t know about past illiteracy a little background, which is that it’s a joint project between Perkins School for the Blind and Texas School, for the blind and visually impaired. And quite a few years ago, Texas was working on creating a literacy site, and Perkins was creating a literacy site. And we got together and said, Hey, let’s do one together So it’s been really wonderful, I think for the field because it’s a place where people can start to look for all of the information in one place. And it’s an honor for me to be able to manage it at and really enjoy to see the contributions that come in from everywhere.
Jonathan Wahl: 14:56
It really is a great resource for the field, so we appreciate you being a partner with us. Let’s start talking a little bit about this ExCEL project. How did it get started?
Charlotte Cushman: 15:07
Yeah, well, just over a week ago, Cheryl Kamei-Hannon, who’s the coordinator of the visual impairment blindness program at Cal State L. A. approached me because I’m the manager of Paths to Literacy to see if we might be able to coordinate some kind of service during school closures. She also invited APH because of your ability to reach people at a national level, and we started kind of brainstorming. Um, as we all know, things have changed way faster than we ever would have thought possible, with schools closing overnight literally and a lot of uncertainty about how Service’s could be provided to students with visual impairment, especially through distance learning. There’s a huge range of what’s being provided around the country now, depending on a child’s home situation and also in the school district in the state. Some kids have parents who continue to need toe work through the crisis, and they’re not able to be actively involved in home schooling their kids. And, of course, many families don’t have Internet, and that’s obviously a big problem for reaching Children remotely. But our hope is really to provide activities for a broad range of Children, and I really want to be clear that this is no substitute for individualized instruction from a trained teacher of students with visual impairments or a certified orientation mobility instructor, because they’d be working on specific IEP goals. What we’re trying to do is to provide some online lessons on a variety of topics for a really wide range of learners. And I also wanted to tell you that the project, the official name of the project, is the virtual expanded core Education Learning Academy for students with visual impairments. And we knew that was way too long a title. So the short name is the Virtual ExCEL Academy.
Jonathan Wahl: 17:03
Love it. Shorter’s always better. So tell me about how this program is going toe work for people at home who want to join it.
Charlotte Cushman: 17:11
Well, every day we offer one hour of programming for free it to anybody who wants to join us. And we thought it would be good if it’s got if we have a predictable time so that everybody can just plan on this. We said it for the same time each day, Monday to Friday at 2 p.m. Eastern, 1 p.m. Central. And so I’m everybody is welcome to come, but we do ask that people register. Uh, somebody over the age of 18 needs to register the students so we know that there’s parental part permission for participation, and if you want to register, you can go to the Home page of Paths to Literacy, which is pathstoliteracy.org, all one word, and you’ll find a link to the the Virtual ExCEL Academy on the home page and the link to the Webinar there. So we post the schedule there, and we continue to update it with new things. And every day there’s something new being added. We are recording all of the presentations, and we think APH for taking the lead on that. So if it’s not a convenient time or if you wanna watch some of the lessons are things you could watch over and over again, Um, we encourage you to check out the recorded version. I also want to tell you, Jonathan, that as of this morning, they were about 350 people registered, and that’s after just one day. So people only need to register once, and then they can attend anything that’s of interest because not everything will be of interest to everyone.
Jonathan Wahl: 18:43
I know there are going to be different topics every day. Can you kind of give me a preview of what some of those subjects and topics are going to be?
Charlotte Cushman: 18:49
Sure. Well, as you know, the needs are enormous and we would like to offer something to everyone from birth to age 22, including those who are academic and those who have multiple disabilities and are deaf, blind. So, it’s a big task. It’s a lot easier to provide distance programming to some learners than it is to others, but we’re trying to be creative about offering something for everybody. We have a science experiment, for kindergarten through 12th grade on Friday, and that’ll be taught by Jeff Killebrew from New Mexico School for the Blind. Robin Keating Clark from Utah School for the Blind will be leading a number of sessions on the expanded core curriculum. Other things that are coming up in the next few weeks include beginning braille, a session for early childhood for birth to five. We have a lesson on the abacus, a lightbox story hour for children with multiple disabilities, and quite a few sessions offering some kinds of social support.
Jonathan Wahl: 19:53
And what kind of follow up support can teachers and families provide? I know this doesn’t replace a teacher, but how can they support these these lessons.
Charlotte Cushman: 20:00
That’s a great question. We’re really encouraging teachers of students with visual impairment to log in from their own home and then follow up with their students. For example, in yesterday’s presentation, there were quite a few apps discussed, so that would be a good thing to follow up on: did you download that app, how’s it going, did you use it, try some of the things we talked about? And those kinds of extension activities could also be done with family members, with parents, with older siblings. So I think there’s a lot of opportunity to reinforce some of these lessons and to do some extension activities at home.
Jonathan Wahl: 20:41
You mentioned some the instructors earlier, and I can see there’s a lot of teamwork going on here, which I love. Where these instructors coming from?
Charlotte Cushman: 20:47
It has been so gratifying to just see people stepping up from frankly all over the planet. We have teachers, an orientation and mobility instructors from all around the country. We also presenters from the UK and from Canada. Ah, we really welcome instructors to join us we need instructors because everyone’s doing this above and beyond their full time job. So please let us know if you have some ideas of something you might like to present. Um, and we We would love to be able to increase our capacity of what we’re able to offer you.
Jonathan Wahl: 21:22
For sure. That’s great. Right now is a really unusual time in early know how else to describe it? Why is it important for everyone in the BVI community to come together right now?
Charlotte Cushman: 21:33
I’ve been reading on hearing a lot about how people with visual impairments are maybe even more isolated than everyone else. Right now, I think that if you think about visual impairment to people of visual impairment, a big part of it is touch and social distancing is stuff, uh, hard to get around. Transportation was puff, so I think Ah, and things that are available, like the Khan Academy and different things that are available online are not accessible to students who were blind. So I think there’s a need is huge. Um, as I said, I’m just amazed at how quickly people have stepped up and offered to help. And really, in times of need, it’s It’s heartwarming to see how we all reach out to help and support each other. And I think we all recognize that students with visual impairments and their families need all the help and support that they can get right now.
Jonathan Wahl: 22:31
Thank you so much. We are really excited to be partnering with you on this, so I appreciate your time. And for those of you listening, we have a full list of the ExCEL webinars you can virtually attend. Just check out the link in the podcast description. Thank you, Charlotte.
Jonathan Wahl: 22:46
The entire world is experiencing something surreal and unexpected right now. It’s a hard time, but it’s also a time where change makers stand out even more. If you see someone making a difference in the BVI community, we want to talk with them. Send us your suggestions or even your questions to communications and a ph dot or thanks for listening. And don’t forget to look for ways you could be a change maker this week.
Jonathan Wahl: 23:08
Coming up on the next episode of Change Makers, APH President Craig Meador sits down with leaders, and they feel the blindness and visual impairment for a roundtable discussion, how they’re responding to the coronavirus and ensuring that students and adults with visual impairment still have access to the resources they need.