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Long-time disability advocate Barry Long and Dave Tatro from Sound Generations share their lives and learning with Rebecca Crichton, ED of Northwest Center for Creative Ageing. They will discuss how we can all learn how to interact with and support people with both visible and invisible disabilities. Barry Long has faced life-altering challenges that have taught him the value of positive attitude and perseverance. Through his work as a professional speaker, trainer, and leadership coach, Barry has shared his message of motivation with thousands of people; helping them to take action and reach their goals through real conversation, direct guidance, and actionable plans. Long-time Seattle resident Dave Tatro Dave was diagnosed as a teenager with a hereditary, degenerative eye disease called Choroideremia. It's the gradual loss of the rod cells in the retina. These cells are crucial to peripheral vision and night vision. As he ages, his range of vision continues to narrow to a type of tunnel vision and night blindness. It's considered low-vision or ‘legal' blindness. Luckily, the use of a white blind cane has helped Dave stay relatively independent. He can get around on own own when he take his time and adjusts his expectations. He has great admiration for those with more complicated life challenges Rebecca Crichton started her “Encore Career” as ED of NWCCA in 2012 after 21 years with The Boeing Company. She refashioned her skills and knowledge as a writer, curriculum designer, and leadership development coach to offer programs related to Creative Aging at many venues in the Seattle area. An active participant in the local aging community, she writes regularly for 3rd Act Magazine.
In this episode, we discuss the treatments of genetic conditions, exciting breakthroughs, and their costs. A conversation with Assistant Professor Roos van Westrhenen, Professors Katherine Payne and Graeme Black from the University of Manchester, and Wayne Thompson, a patient who took part in a gene therapy trial for Choroideremia.
Achromatopsia, Choroideremia, Blue Cone Monochromacy, Cone-rod Dystrophy and X-linked Retinoschisis. Speakers: Christine Kay, MD and Robert Hufnagel, MD, PhD
What would you do if you learned that you were losing your eyesight? That was a question today's guest had to confront fairly early in his life. As you will hear, it took Sheldon Lewis many years to fully grasp the fact that his life was changing in a way over which he had no control. Even so, as you will discover he did continue to live life as he lost his vision. You will get to discover how today, Sheldon has turned what many would call “the end of the road” into a fascinating and successful career. Sheldon today helps not-for-profit organizations become more inclusive and how he uses accessiBe's accessWidget to help websites become available to persons who happen to be blind or who have other disabilities. Some directories do not show full show notes. For the complete transcription please visit https://michaelhingson.com/podcast About my Guest: Sheldon Lewis is an experienced Sales Director and Partnership Maker. With 40+ years as a business executive, he has had several exits, managed cross-functional teams, consulted on SaaS tools, and expanded businesses globally all whilst being diagnosed with the rare disease Choroideremia as a child which has rendered him to lose his eyesight throughout his life. Sheldon's business travels have taken him from Eastern Europe's to South Africa to the Middle East and China where he took 40 trips and got to know the airports and the people very well. Sheldon's extensive background in the Textile industry has helped him through life in his various corporate functions and the constant trait of adaptiveness has given him the courage to find practical tools to navigate the daily challenges that come along without being blind. Today, Sheldon works as a Non-Profit Partnership Manager at accessiBe fostering strong relationships across the disability community and advocating for a more inclusive web. Outside of business, Sheldon is a passionate car enthusiast, biker, skier, sailboat skipper and walker - Sheldon has now turned his physical fitness to the indoors and outdoor walking on flat surfaces for safety reasons. About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog. Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app. Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts. Transcription Notes Michael Hingson 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us. Michael Hingson 01:23 Well, hello, again, this is Michael Hanson, and we appreciate you coming wherever you may be at the moment. Thanks for dropping into unstoppable mindset. We're glad you're here. And we have I think another fun episode, we have a person to talk with a person who I've gotten to know over the past year, and who has become very much involved in some of the accessibility initiatives in the world. He works for accessiBe. His name is Sheldon Lewis. And he works with a lot of nonprofit organizations. And I'm sure he'll talk some about that as we go forward. But Sheldon has an interesting story to tell to demonstrate why he, like so many people is and can be unstoppable Sheldon, welcome to unstoppable mindset. Sheldon Lewis 02:08 Hey, I'm glad to be here. Mike. Nice to see you today. Michael Hingson 02:12 Glad you're here will tell me a little bit about your your life you have not been blind all your life. Sheldon Lewis 02:17 No, I was lucky in that I was born with sight. But I have a slow acting degenerative eye condition called Kreuter Rivia. And this has reduced my vision by about five to 7% a year. And I was night blind by the time I was nine and 10 years old. And but I lost most of the rest of my site in the last 15 years. So unlucky, I had Satan for most of my life. Michael Hingson 02:50 So you know, just to pick on you a little bit, I don't know whether that's luck or not, you know, there, there are a lot of people who have eyesight and look what they've done with the world. I think that it's a different point of view, needless to say. But I also I think that that having eyesight certainly gave you the ability to learn how, if you will, a lot of people see the world and now you get to look at how people see the world another way. And what do you think? Do you think that one one way is really worse than the other way? Or what do you think about not having eyesight as opposed to having eyesight? Sheldon Lewis 03:30 You know, it's a funny thing that you asked that question. Because all my life, I said, Would I rather have another kind of disability? And the answer is no, I wouldn't. And I'm perfectly comfortable with losing my sight because that's what no one is going to happen all of my life. So I've adapted along the way. And I'm okay with it. It's not the best situation, I'd rather have sight. But that's my life. Michael Hingson 04:01 Yeah, I mean, you You were born with it. And you you don't have that sense as you used to. But at the same time, what you have learned to do is to accomplish tasks in different ways than when you're able to see I assume that you've you've done that. Sheldon Lewis 04:21 What I haven't learned to do yet is drive blind. Michael Hingson 04:26 Why is that? Sheldon Lewis 04:29 The technology is not there yet. Michael Hingson 04:31 Exactly right. There are there there are examples of people driving the the National Federation of the Blind back in 2011 conducted a a demonstration of a car that a blind person could drive it was a standard ford escape but they put some additional technologies on it to give a driver the information necessary to be able to drive in this case around The Daytona motor speedway. Sounds good to me. And yeah, it's not ready for for primetime and for street driving yet, but the concept was proven. If you haven't seen it, go watch the video. It's at www dot blinded driver challenge.org. Blind Driver Challenge not org. It's It's fascinating. The reality is, and I think you're touching on it. Blindness isn't really the problem with most things that we have to deal with it as is it? Sheldon Lewis 05:29 No, it's just a challenge. And the challenge is to overcome the challenge, so that you can keep on living and doing what you want to be able to do. Michael Hingson 05:41 What is the biggest challenge that you find in the world being a person who happens to be blind? Sheldon Lewis 05:49 Oh, the biggest challenge, I guess, is around accessibility, and doing things as a couple with my wife. Those are the two big challenges. I think. If I accessibility, I mean, how to use websites, how to walk around on the street, how to maneuver without getting hurt, and things like that. Michael Hingson 06:20 So in overcoming those challenges, what would you like to see occur that that maybe hasn't really happened yet? Sheldon Lewis 06:31 Well, I wish that more companies would adopt accessibility to their websites, there are many technical software's that aren't accessible at all. And those really prevented me from using those tools in my work life. As far as getting around outside, if there was a technology that was like those new glasses that are available from Google, but also combined with a GPS that could, you know, guide me and tell me, this is coming up stated left, oh, and I would let them know what store I want to go to. And it would guide me right there all in one, and then be able to go into the store and do my business by myself. That would be really ideal. Michael Hingson 07:31 Of course, today, you can do that to a large degree using let's say an iPhone, because you can use some of the map programs, blind square and other apps on that. And accomplish those same things. Although there is an advantage to being able to wear glasses. The problem is that, at this point in the world, we haven't really seen a pair of glasses developed that will have a long enough battery charge to be able to person to work all day and accomplish the things that they want to do much less than having the other interpretive information that you want Sheldon Lewis 08:06 to have. Yep, it will be great when it comes I don't believe we're far away. 5g will help that I guess. And I think battery will happen sooner or later. Even if I have to wear a battery pack on in my in my pocket or something with a wire attached to the glass. That would still be okay. Michael Hingson 08:26 So, as you are growing up and losing some eyesight, you went to school I assume. Sheldon Lewis 08:33 I went to school or went to University in Philadelphia. I live in Montreal. Michael Hingson 08:39 What drove What did you graduate with? What Sheldon Lewis 08:42 graduated with a textile management and marketing degree? Michael Hingson 08:47 What took you there? What Why did you get that degree? Sheldon Lewis 08:50 We had a family business, and it was in textiles. And I had always wanted to be in that family business. From the day I was diagnosed. I turned to my mother and said, How am I going to be in the family business if if I'm blind? And and that was the last time we discussed that? What did she say? She just cried. It was very difficult for her. Very, very difficult. Michael Hingson 09:20 So how was your family dealing with blindness as you grew up? Sheldon Lewis 09:24 Um, to be honest, they didn't help me very much. It was too tough a conversation for my mother to have. My father was, you know, a great father. But he didn't or couldn't talk about this blindness thing. And so I went about it by myself and never even told anybody that I was going to be blind until I had to stop driving. And that's when it all came up. Michael Hingson 09:57 When did you stop driving? I stopped After you've stopped driving yourself that is, that's right. Sheldon Lewis 10:03 I stopped driving myself when I was 30. I love driving, it was fantastic was my passion. And I still remember it very well. Michael Hingson 10:13 All right, how old are you now? Sheldon Lewis 10:15 Have 60 going to be 64? Okay, Michael Hingson 10:18 so you have not driven for more than half your life? That's right. Okay, so you got a degree in the in textile management? And then what did you do? Sheldon Lewis 10:30 I went to the family business, and then drove myself around, I opened up some factories, I traveled a lot to Europe, Eastern Europe, all over the world, Africa, and North America, of course. And then it became a little bit more difficult to, to manage that part of my life, because I couldn't drive anymore at night. And, you know, this is in my mid 20s. And going through tunnels was tricky. Because I don't really have to follow the lines on the roads, or the lights from the cars in front of me. And if there weren't any cars, it was a big problem. So I really had to give it up sooner than I did in here. After that, after that, I managed to, luckily stopped managing certain facilities that were outside of Montreal, and I started using the public transit system to get around and vote. Yeah, go ahead and kept on in the textile business until three, four years ago. Michael Hingson 11:43 So you continued in the business, you were in the family business all that time? Yes. So did you essentially assume the responsibilities of the business? Sheldon Lewis 11:54 I did. So as to the company. And it was, it was it was strange, because I had to keep on changing my abilities, and what I could actually perform as the President, as my eyesight went down, Michael Hingson 12:12 how did your your family respond to that? Well, Sheldon Lewis 12:20 I have my immediate family, which is my wife and kids, right? Well, they Yeah, it was, it was difficult for my wife, to see me lose my sight. My kids knew that I couldn't see at a very, very young age. So it kind of just was a natural thing for them. And they saw it happen. And we just dealt with it as a family. But between my wife and I, it was it was difficult at times. Michael Hingson 12:50 How about your parents, they must have been seeing this change occur? And then you took over the business? Were they still around? How did they react to all of that? Sheldon Lewis 13:00 Yeah, my mother passed away a long, long time ago. So she didn't actually see me go through this part of my life. My father, I worked with him up until the business closed in 2018. But again, we didn't talk too much about the blindness. He saw it happening. He didn't approach me with it very many times. And that's the way it was. Michael Hingson 13:31 Yeah. And you just you moved on. So what did what was his job, as the business progressed, when you were president and so on? Sheldon Lewis 13:39 He was chairman. We had, we had divisions in different countries. So he took on the management role in two of those divisions, I took the management role in the other ones, and I did all the buying. So it was it was tough to do the buying, as you can imagine, because when you can't see what you're buying, you have to rely on other people to to judge for you. And there's all kinds of trust issues that come with that performance issues. And, you know, they just didn't have the same ideas about what I wanted to target businesses as I did. So that was there were difficult times around that. Michael Hingson 14:21 But you perceived what you needed to do and you pursued your dream. Sheldon Lewis 14:27 I did. I tried my best, and I never let it get the better of me. Michael Hingson 14:32 How come the business closed? Sheldon Lewis 14:35 You know, circumstances changed a lot. It was it, the world became very focused on a huge selection of product, which meant a very large investment. And unless you had a very good distribution that work your a good portion or too much of a portion of those products didn't sell enough. So We ended up, you know, having to take financial losses based on that scenario. And we just couldn't blast that out. Yeah. Yeah. Michael Hingson 15:09 Yeah, the whole market, in a lot of ways has changed. Companies have come along like Amazon and so on that, that do the things that they do. And of course, they even make products now, but still, they they come along, and that that changes the whole landscape. And is that a bad thing? Well, depends on, on who you are. But for you, but for you was just a change that the company could really continue to deal with, I Sheldon Lewis 15:37 gather. That's it. Michael Hingson 15:40 And so you went on. So when did you become totally blind? Sheldon Lewis 15:45 I still see light. Everything is at fault, though. And I have no central vision. So my brain up until about five years ago, kept on saying to mice to itself, I could still see. And it was great, because I had this little cocoon of vision, that that allowed me to pretend that I wasn't blind. And only only in the last five years of, I've had to tell myself don't challenge you really are blind now. And you better get used to being going. Michael Hingson 16:23 What did you do to prepare for that? Sheldon Lewis 16:26 That's a very good question. I didn't want to prepare until I had. And unfortunately, the first thing I had to adopt was using a white cane. And I didn't do it until it was too late. And that's still quite late. After which point, I knew that I broke it because I wasn't using a cane. I knew that. So I started using it. And it was very difficult to, to, not to master, but to overcome the fears of of learning how to use it. And but, you know, I could still see more than I could later on. So my first experience with the white cane was less, less deep. Then, as time went along, that it needed, that it needed to be my skill set to improve as time next. I'm happy now I could walk anywhere in the city. And my biggest problem is when I get into a construction zone, or if I get lost, and if I get lost, I hope someone is around to help me and I don't, I'm not shy about asking for help. And at a construction zone in Montreal anyways. The there's always a construction guy on the live constructions that went anyways, there's always a guy who comes over to take me by arm and help me around the construction. So Michael Hingson 18:04 yeah, there's a lot of construction on the world isn't there? A lot. It happens. We all we all get some of those kinds of things. And, you know, there are a lot of sighted people who get trapped in those things, too. But yeah, but we we do have our adventures in those kinds of environments. So you must have faced a lot of fear, when When did fear kind of really become an integral part of you having to deal with all this? Or were you? Were you fearful at the beginning? I mean, you learned at nine years old that you were going to be losing eyesight and so on. Was that a fearful time? How does fear enter into your life, Sheldon Lewis 18:48 it was a very fearful time I went to the first time it became a problem for me, I went to summer camp. And, of course, activities take place after dark. And as dark as darkness came along, it was a problem I get, I get really scared. I didn't know that I should ask anybody for help. So I didn't. And basically, I went back to the cabin as early as I could. And so that I wouldn't have to bump into trees and trip over roots. That was a very scary time. Other times when it was scary was, you know, if I were driving, like I said before, and ended up in a tunnel, or a place where there were no lights on the roads. That wasn't very, very, very much fun either. Took a lot of guts. But I think what took more guts was learning how to use the white cane and becoming familiar with how good it would be for me, and not worrying about what people thought and Just go around, finding ways to make it work, adapt to the circumstances get more training every time my vision went down a little bit. And so that was my first taste of fear. After I quit driving, and after a young age, later on, it became way it really can't see right now, I better get ZoomText. Okay, so how do I learn to navigate my computer. And that wasn't so wasn't so simple, but it wasn't too hard. But the fear of thinking about it, and worrying that I wouldn't be able to do it, stop me from trying to do it at an earlier point in my life. And I had to wait until I had no choice. So that that was okay, once I figured out I had no choice I just went for. And when I went up went past, being able to use ZoomText, I had to use JAWS. And yeah, I just rolled into jaws, and that was no problem, continued to get more training around food preparation. So fear stopped being a big part of my life. But it's still when I have to do something new. It's a little bit fearsome. Michael Hingson 21:25 Tell people what Jaws is. For those who don't know, Sheldon Lewis 21:28 Jarvis is a screen reader. That's quite remarkable. It was developed in the early 90s. And it's gotten pretty good at at this point, and then helps me navigate through websites. So if a website is properly coded, jaws can interact with all the links and fields and forms and buttons properly. But if the website isn't coded, then Jaws doesn't know, by using my tab key and my arrow key that those fields are there. And that's what inaccessible website is, my screen reader doesn't pick it up. And so I don't know what's there. Michael Hingson 22:08 So to drill down on that a little bit more just to help. Jaws is a software package that can be loaded on Windows computers, primarily. And what it does is it verbalizes, whatever comes across the screen, but it is limited to alphanumeric textual information, it doesn't do graphic information. Because graphics requires a lot more interpretation, which is another whole story. But Jaws verbal as is what comes along, so long as it can actually understand it. Which is really what Sheldon is getting to, which is that there are limitations. And we'll, we'll get into that. But you but you use JAWS. And you know your story very much parallels, the stories of so many people who lose eyesight sometime later in life or after birth. And the one thing that we usually encounter in hearing these stories is that there weren't agencies or people around to really start to teach you that it's okay to be blind, that blindness isn't really the end of the world. And you had to eventually break a leg to decide that it would be ye but useful for you and practical to use a white cane and then eventually accept it. And there's so many stories like that. But the reality is blindness isn't the problem. And it's kind of we have sort of worked around it. But the real issue is what people think about blindness, if you had have people who you could have gone to or who learned about you, and then could come and help you and say, you know, you're gonna lose your eyesight, but it's not the end of the world. And the thing to do is to start to learn these techniques now. Because the longer you take to decide to do that, the harder it will be because you won't have the eyesight that you have today. And you never got that opportunity, which is unfortunate, because you might have discovered a lot earlier, the advantages of learning blindness techniques to use while you're losing your eyesight. Sheldon Lewis 24:28 Well, I have to correct you slightly, because I had the opportunity. My rehab center in Montreal was always there. I've been going there for 40 years. The problem was that because we never talked about it at home. And nobody ever said to me, you could do that which you should said Michael, and you could help yourself get trained at an earlier point, stuff like that. And because I was a little fearful of actually being a blind person and having to learn all these new things and a new way of working with life and lifestyle? I didn't want to do it until I absolutely absolutely had to. How much Michael Hingson 25:11 was the agency there? In Montreal? I don't want to use the word pushing. But how? How involved? Were they are? Were they kind of just saying, well, you're going to have to make the choice to do it. We can't force you. How, how pushy, were they, if you will? Sheldon Lewis 25:31 Well, they were very positive in offering me any of the services I wanted. And they kindly introduced all the possible services to me, based on my circumstances at that time period. Again, I didn't go to a social worker there. So no one said to me, Sheldon, you'll be better off learning it now then, at a later point, and I figured I knew better for myself. So I only wants to learn it when I needed to. And so that was a small mistake on my part, perhaps. But looking backwards, it suited me fine. Except for the legwork. I was, I was okay with how I approached it. Michael Hingson 26:15 We interviewed on unstoppable mindset, some time ago, a lawyer who lost his eyesight as he grew older. And he decided that he wouldn't be able to drive anymore and had to recognize that he was blind, after he totaled his second car in a year. Right. And, you know, so there are there are things that happen. It is a it is a story. It is a it is a constant story. And the problem is that in dealing with blindness, if there aren't a lot of role models, and if there aren't agencies that can learn to couch it in a way that you can understand up, you're going to do exactly what you did. Well, okay, but but you're here now. And you have moved on from a life of total eyesight to a life mostly of have no eyesight at all. And you sound like you're accepting that pretty well. Sheldon Lewis 27:16 Yes. So, yeah, go ahead. That's okay. For me. Michael Hingson 27:22 Good. So, so you lost your eyesight, you broke your leg, you learn to use a cane, you now move around Montreal and, and, and all those kinds of things. You closed the business in 2018, then what? Sheldon Lewis 27:37 Then I had to figure out what I wanted to do. And I had always wanted to be involved in somehow helping the community. And I wasn't sure what that meant, or how to get involved in it. Because I've never done anything like that before. I was very busy with work. And so I started looking around, how am I going to approach business and accessibility at the same time. And that's when I discovered the accessiBe and their websites, or websites, because all the other websites I had looked at in this journey of what am I going to do now. We're basically an inaccessible and give me problems navigating. And when I got to accessiBe's website, the their website was navigable. And that's about this incredible. That's that's how I met accessiBe. And at the same time, I started to get involved with the community here in Montreal. I joined the philanthropy committee at the local rehab center started doing some committee work and fundraising. I got myself on the city accessibility advisory committee that last year and I've tried hard to to integrate into this community and and create a new path for myself. Michael Hingson 29:13 wondering did you discover accessiBe? Sheldon Lewis 29:17 I think I discovered them in 2019. And when it when I discovered them, I was so excited. I called the number on the screen and the CEO picked up and it's like, wow, we hit it off right away. And I got to know the other partners in the company as well over time and I felt very good and comfortable around them and their technology. Michael Hingson 29:50 So you discovered it and you call the number and well so So what have you done with accessiBe Over the past three years, did you just start to use it and learn about it or what? Sheldon Lewis 30:05 No, at first I went, and I tried to sell the technology. I thought it was a great offer. And I wanted to share it with everybody that I could. And I found that to be a little bit more difficult than I thought. I've never done a cold call sales kind of job before. And I'd never sold technology before. And then I wasn't hitting on a lot of people who wanted accessibility for their websites that that was the really strange thing. Is that not any Pete? Nobody was contacting wanted accessibility for the site's why? They said, It's too expensive. It's too long. I don't need it. I don't have clients for it. And I'm not interested. And what is accessibility, many of them asked me, I don't even know what that is. So I gave that up. And after six months, it was too harsh. And I wasn't getting enough results. I started looking into other technologies ran into the same problems with the disability, and using those platforms to build a business around or, you know, something for myself to do. And then very luckily, accessiBe called me not too long ago, last April or March, and said that they were starting a new initiative called the nonprofit partnership program. And they wanted to know if I wanted to join as a person working for them. And I said, Well, what would I be doing? They told me, Well, I think you might like this job. It's it's all about contacting a nonprofit organizations that provide services to the disabled, and offering our technology at no charge amongst other community driven initiatives. And I said, Wow, you mean I can, I can meet all these wonderful people talk about accessibility, give them a solution, and help all their clients who need more web more websites to be accessible with their accessibility needs. I meant, that's, it took me five minutes to decide that I was in and ready to do this job. Michael Hingson 32:29 So yeah, go ahead. Sorry, Sheldon Lewis 32:31 since then, I've really enjoyed my my eye opening experience, learn a whole bunch of new technologies that I had to start using to do the job. And there are a lot of great people. Michael Hingson 32:47 So how has that been different than going out and selling the actual product to paying customers? Why are you more successful doing this? Sheldon Lewis 32:59 That's a good question. The people are more receptive. They know they need accessibility. They even feel that as it is, you know, an organization providing services to the disabled, their website should be accessible. So they're unboard almost immediately. And then I don't have to do too much convincing. Whereas, you know, commercial customers, it was a lot of convincing and and including why they should be accepted. Michael Hingson 33:35 Do you think yet the landscape the mindset is changing? And that may be more commercial organizations profit making companies are recognizing the need for accessibility? Or do you think society is there yet? Sheldon Lewis 33:52 That's another good question. I think that the black lives matter, matter, whole thing, plus COVID have really wait raise the awareness levels of everyone, to many different plates of different people. And so I think that people are more open to what it says ability means now and trying to become accessible and do the right thing, way more than compared to before. So yes, I think the commercial world has changed. And not only that, I think they're also realizing that as the population gets older, there's I think about 20% of people have one or two disabilities, and that that might be one of their clients. And on top of that, if they help those clients use their websites, those clients might become loyal customers too. So I think all this information is starting to sink in, and people are more receptive and open to it now. Michael Hingson 34:56 So what kind of new technologies have you learned over the past Several months, Sheldon Lewis 35:02 I've had to learn how to use Zoom. That's been a good challenge. I learned how to use PowerPoint, just last week to do a presentation, I learned how to use Excel in a much deeper way. So that's been good. And, and the best part is that I've just growing comfortable with doing all the different parts of my job, and this new technology. Whereas six months ago, and eight months ago, when I started this job, I was very nervous about the technology and using it. You know, a perfect example is, when I go to a Zoom meeting, the when I after I admit the person to the meeting, the software tells me that the persons left the waiting room. So at first, I thought, oh, no, I lost a customer. Oh, no, you know what, I was panicking at everything. And it took me about 1010 tries to start to realize that no, I didn't lose anybody, because they were going to come automatically to the meeting after that. After though that's the meeting room. So that was, you know, a good experience. Don't feel very comfortable. I noticed scheduling my own meetings. I've learned how to use Calendly. It's good. Michael Hingson 36:29 What are some of the other major sales tools that you've had to learn to be able to reach out to people deal with letters deal with contact databases and so on? What do you use? Sheldon Lewis 36:41 Yeah, I use LinkedIn a lot. LinkedIn, I find it's become more accessible. In the past year and a half. I don't have as much trouble as I did two years ago. I do a lot of marketing on LinkedIn. And I like it. I use it on my phone, of course, had to learn how to use my phone as well as a blind person. Thank goodness, the the iPhones came along with VoiceOver when they did, because it was exactly at the time when I could no longer use a cell phone. And I was trying to figure out what I was going to do in business if I couldn't use a cell phone. And then there was lucky me. And there you are, yeah, I use Twitter. Sometimes not to my utter, I can use Facebook, but I don't really like it. So I think those are the technologies of using. Michael Hingson 37:37 What are some of your real successes since you have began this journey? And are working with nonprofits? What are some of the the really exciting opportunities that came along? Where you've been able to truly assist? Since that's what you wanted to do? Sheldon Lewis 37:56 Yes. That's a very good question. I think that the first answer is that I'm helping all these people get to be accessible, and overcome their own challenges of how to attain accessibility for the websites. Everybody finds it very difficult to take the time to spend the money is wrong, limited budgets. So I think the the first best part of my experience with this is helping people become successful. Michael Hingson 38:33 Can you give us a story of one place where you had to take people through the journey, and then they came out the other end and found that what you were doing was a good thing? Sheldon Lewis 38:46 Yes, I met with Community Living Hamilton, and they could not afford accessibility. And after telling me why, you know, too much takes too long. They don't have enough people resources. They, I took them on a tour of the software demonstration for them. They were blown away. They couldn't believe how good the software was, and how accessible it be a website seemed to them and, and they said, Okay, I'm ready to sign up. I just have to speak with my executive director, and everybody on the team on board. And everybody in the organization came back and said they loved it. And they were ready to go forward with it. So that's a good feeling. And, and I know I've helped a whole bunch of people gain access to their website at the same time. Michael Hingson 39:49 How many organizations do you think over the past several months you've been able to meet within and get to make their websites more accessible? Sheldon Lewis 40:01 by saying that I've personally gotten to about the 50, Mark, or 60, Mark, but I've been in touch with about 125 clients right now. And but it's funny, not all organizations want to go down the path of accessibility, even if we're willing to provide it to them for free. They never see why. They just don't come back. Michael Hingson 40:31 And you don't know whether they've gone elsewhere or Sheldon Lewis 40:35 what? Oh, this one, this one organization told me they went somewhere that their web developer told that they should go to, uh huh. But no one else is, has told me why they're not taking it, since Michael Hingson 40:51 they don't make them just accessible for blind people do they Sheldon Lewis 40:55 know they're accessible, if they do a good job, on their website accessibility initiative, they can address the needs of all the different disability groups that are out there. That's why I love accessiBe especially because it addresses all of the disability groups needs that are out there, and brings up the general level of accessibility for any site. And it's a great thing. Michael Hingson 41:27 What would you say to anyone who is listening to this, and who wants to learn more about accessibility, nonprofit or profit making? Sheldon Lewis 41:40 Well, there's a lot of information on the internet, obviously, they can go to accessiBe's website, they can get in touch with me any time, I'll be an impartial counselor for them to tell them about what accessibility is, how they can get it, the different possibilities that are out there for them to use. And then there's lots of resources. So we just, we just want more and more people to become accessible on their websites as quickly as possible. That's our goal mission. And it says to be actually to make all websites accessible by the year 2025. Michael Hingson 42:23 ambitious goal, Sheldon Lewis 42:24 ambitious, still 500,000 new websites every month, or, or something like that worldwide, that's, that's a huge number. So a scalable solution, like accessiBe is great for that, because you don't need to spend 10 or 15 weeks coding a website that spend, you know, between five and 30,000, or $50,000, making that website accessible, and then having to keep it accessible afterwards, is another job in itself. That accessiBe tackles very handily. Michael Hingson 43:03 You have taken an incredible journey in your life, certainly one that you didn't expect to have to take or that you thought you would take, but you've taken it. And you've come out the other side and done pretty well. What would you say to anyone who's listening to this? Who happens to be losing their eyesight? Or who has not been given any kind of training about dealing with blindness? Or for that matter? Any any person who is encountering the fact that they're becoming a person with a disability? What kind of advice would you give them? Sheldon Lewis 43:43 Well, when you have a disability, you can't do things at the same pace. You used to be able to do them before, especially if the disability grows on you, you're slowly becoming less speedy. And the best thing is, is if you can recognize that, and slow down so that you can do more for yourself, be aware, have more, not hurt yourself at the same time. Recognize the challenge, try and adapt to it. Adapting is a big skill that that takes a long time to recognize you need to have because all you have to do when you have a disability. And this is not true for everybody. But you have to try and find another way to to do the same thing. So someone loses the use of their legs, for example. And they used to go shopping everywhere when they used to be able to walk and then suddenly they have to use a wheelchair or crutches or something like that. They have to have to figure out a way with help or without help to be able to do the same thing so that their life doesn't get ruined. And, and, and they can keep on doing things that the worst part of my vision for myself was when I used to wonder, could I overcome my challenges? So that didn't, so that I didn't, you know, just get down by by losing my sight. And I haven't, I've lived up to my own expectations, my own wishes, by keeping on being able to do things, even if it's a new way. Michael Hingson 45:30 If people want to reach out and get in touch with you, how can they do that? Sheldon Lewis 45:35 Well, they can reach me on my telephone, which is a toll free number at 855-561-4297. Or they can reach me by email at Sheldon S H E L D O N L E @ A C C E S S I B E .com and I'll be happy to speak with anybody about accessibility issues. Michael Hingson 46:14 That is great. Well, Sheldon, I want to thank you for taking time out of your day, your busy day to visit with us here on unstoppable mindset and I think it's pretty clear that you've demonstrated your ability to continue to be unstoppable. For any of you listening feel free to reach out to Sheldon again email is Sheldon L E at accessiBe A C C E S S I B like Baker E .com And if you would like to reach out and comment to me about this podcast, we hope you'll do so you can reach me at Michael H I M I C H A E L at accessibe.com Visit our podcast page www.MichaelHingson,com/podcast. love to hear your thoughts. If you'd like to be a guest on our podcast, please reach out. And also I asked you when you listen to us, please. Wherever you listen to podcasts, give us a five Star rating. We'd appreciate good ratings from you. It helps us and it helps other people understand what we're doing. And the world really can be inclusive for everyone. If we allow our mindsets to let us be unstoppable and move forward, Sheldon again. Thanks very much. And thank Sheldon Lewis 47:41 you very much, Michael. It's been a pleasure talking with you today. I really enjoyed myself. Michael Hingson 47:46 Well, thank you. I did as well. And we hope that you'll you and everyone else will come back again next week for another edition of unstoppable mindset, the podcast where inclusion, diversity and the unexpected meet. Thanks again. UM Intro/Outro 48:05 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you're there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com. accessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for listening. Please come back and visit us again next week.
Episode 013 – On the AccessAbility Works podcast, Dr. JR Rizzo discusses his latest medical research on assistive technologies, including mobility solutions for people who are blind or visually-impaired. What makes his work more interesting is that Dr. Rizzo is also a member of the visually impaired and print disabled communities. JR has Choroideremia a visual impairment and was diagnosed with this condition when he was a young boy. Dr. Rizzo is affiliated with the NYU Langone Medical Center and Director of Innovation and Technology for the Department of Physical medicine and rehabilitation at Rusk Institute of Rehabilitation Medicine.
Choroideremia (CHM) is a rare inherited disorder that causes progressive vision loss and ultimately leads to complete blindness. The disease affects the retina, which is the area at the back of the eye. The Choroideremia Research Foundation is on the forefront to a cure for this rare form of blindness. In this interview, Cory MacDonald (Engagement Director) shares the amazing story behind Choroideremia Research Foundation and their incredible advancements toward a cure. A little bit about the Choroideremia Research Foundation: The Choroideremia Research Foundation (CRF) is the largest organization in the world focused on the search for a cure for choroideremia (CHM). Our mission is to raise funds in support of scientific research leading to a treatment or cure of choroideremia, a hereditary retinal-degenerative disease that causes blindness; to educate people affected by the disease; and to inform the public. The CRF was founded in 2000 by a small group of individuals affected with CHM and their families. There are an estimated 6,600 affected male CHMers in the United States. The organization hosts regular conferences for patients and families as well as scientific symposia for researchers and clinicians. It also offers one-day regional meetings several times a year around the world. Webinars and interactive online chats are offered (and recorded) several times monthly on topics such as emotional support, research, assistive technology, clinical trials and genetic testing. CRF hosts a CHM patient registry. The organization advocates for patients legislatively nationally and internationally, provides education for medical professionals, and offers information and one-on-one support to patients and family members. CRF was conceived by a small group of patients in 1999. It formally established nonprofit status in 2000 and began funding research in 2002. A few of CRF's first early research projects included establishment of a CHM mouse model, creating induced pluripotent stem cell (iPSC) models, formation of a human CHM cell biobank, and support of several pre-clinical gene therapy research studies which ultimately led to launch of three clinical trials. CRF is now exploring collaborations and/or funding development of a CHM pig model, possible pharmaceutical therapies, gene therapy, optogenetics (light sensing), neuroprotection (to delay progression), rna and dna editing, stem cell therapy, sight replacement therapies, transplantation, assistive/bionic technologies, and understanding genetics and phenotypes (characteristics and variations) of CHM cells and how these differences may affect progression and outcomes. Learn more by visiting https://www.curechm.org.
In this podcast, Tom Walker talks to Gary O'Connor about the challenges he faced in his personal and professional life while losing his sight as a result of the eye condition, Choroideremia. Gary tells Tom about the lengths he went to, to hide his eye condition from his employers and his passion for music.
Stu Starkey is blind as the result of a degenerative condition called Choroideremia. He started losing his sight in his twenties, and para sport taught him that he didn't have to be ashamed of his vision loss. Stu started out in able bodied swimming, and competed in rowing and para triathlon. ALSO, he's legit a genius, and pours his brain power—AND heart—into the moving company Two Small Men with Big Hearts. Stu is passionate about giving back to the community—which is the motivation behind HIS podcast Community of Big Hearts (which you should probably subscribe and listen to!). Stu lives in Winnipeg with his amazing wife, Lillian, and daughter, Collins. He's a super fascinating human, and we hope you enjoy our conversation!
Dr. Ian MacDonald, Professor Emeritus in the Department of Ophthalmology at the University of Alberta, provides a detailed overview of the current state of genetic therapies for degenerative retinal diseases. Dr. MacDonald further describes Choroideremia, including disease pathology, prognosis, and potential treatment avenues. Finally, Dr. MacDonald explains his reaction to being nominated for a Lifetime Achievement Award by the Canadian College of Medical Geneticists, pointing out some of his own remarkable mentors throughout his career. http://broadeye.org/ian/
In this episode, the host Alex Sparks talks with Todd Purvis, who is a post production editor for The real house wives of Beverly Hills. Todd has a disease known as Choroideremia, which is very similar to Retinitis Pigmentosa. This diagnosis inspired Todd and his brother, who is also diagnosed to shoot a short independent film called "Driving Blind". The film is a documentary of their journey around the United States to see all of the sights, landmarks and monuments before they potentially could go blind. This film is a sure recommendation for our listeners and the links are below, both traditional and audio described. https://www.youtube.com/watch?v=wPWkif-5-z0https://www.youtube.com/watch?v=5Gq7BJ8BUSQ
Go online to PeerView.com/AGK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in choroideremia discusses the diagnosis of choroideremia and treatment via novel and emerging gene therapies. Upon completion of this activity, participants should be better able to: Describe current unmet needs with regard to the treatment of choroideremia and the burden on patient quality of life, Apply evidence-based criteria to recognize and diagnose choroideremia, including the use of genetic testing, Recognize the potential impact of novel and emerging gene therapies on the management of patients with choroideremia, Identify patients who may be eligible for treatment, should therapies become approved, and/or enrollment in clinical trials.
Go online to PeerView.com/AGK860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, an expert in choroideremia discusses the diagnosis of choroideremia and treatment via novel and emerging gene therapies. Upon completion of this activity, participants should be better able to: Describe current unmet needs with regard to the treatment of choroideremia and the burden on patient quality of life, Apply evidence-based criteria to recognize and diagnose choroideremia, including the use of genetic testing, Recognize the potential impact of novel and emerging gene therapies on the management of patients with choroideremia, Identify patients who may be eligible for treatment, should therapies become approved, and/or enrollment in clinical trials.
Elizabeth Lucas-Smith and I met in San Francisco back in 2007. 10 years later we meet up (outside of San Fran) and continue a talk we started a decade ago. We talk about the hereditary and degenerative eye disease - Choroideremia. Its a disease that hits both of our lives and families very hard. She is a carrier of it and I am going blind from it. Liz recently had twin girls who will likely be carriers of the gene and she recently had her son tested and was found to have Choroideremia. We talk about being a carrier, being raised by a blind father, having blind uncles, her feelings of passing on the gene, we also talk about her love of her husband, and how she struggled with postpartum depression, and so much more!!! We were able to have a lot of laughs along the way as well. Please Listen! Please Share! Please Enjoy! Twitter @ejscott @EJPodcast Instagram @ejscott1106 My website www.ejscott.com Charities to donate to www.crowdrise.com/7on7 RUNNING BLIND Documentary available on iTunes, google play and Amazon
I am losing my eye sight to a rare degenerative and hereditary eye disease called Choroideremia. This year I am running 7 Marathons on 7 continents in the hopes of raising awareness and money for not only Choroideremia research but also for other charities and causes. And also to see the world before I can't anymore. In this episode I run my FINAL run of the year and possibly my life? I talk about the Toronto, Canada run and interview my guide, Natalia, who I met while running the Antarctica run earlier in the year. Please Listen! Please Share! Please Enjoy! Please donate to the charities Im running and raising for. www.crowdrise.com/7on7 My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
I am losing my eyesight to a degenerative and hereditary eye disease called Choroideremia. This year I am running 7 marathons around the world to raise money for charity and to see the world before i no longer have the opportunity. In this episode I talk about running the Guayaquil, Ecuador half marathon. Originally I was supposed to run Rio de Janeiro a few months ago but sickness prevented me from doing that. So this run is a last minute fill in I was able to get two guides from Guayaquil who I interview. They helped me get through the race. Donate to the charities Im raising and running for www.crowdrise.com/7on7 My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
I am losing my eye sight to a disease called Choroideremia. This year I am running full and half marathons on all 7 continents to see the world and raise money for different charities www.crowdrise.com/7on7 In this episode I talk with my 3 guides (Mike, Sarah, Debs) that helped me run the race and the guide (Phil) that couldn't because he had a rib removed! I also talk about my injuries, my worries, the race itself and more! Please Listen, Please Share, Please Enjoy! Twitter @ejscott @EJPodcast Instagram @ejscott1106 My website www.ejscott.com The Choroideremia Research Foundation www.curechm.org
I am losing my eye sight to an eye disease called Choroideremia. It is degenerative and genetic. So others in my family have it as well. My brother and two nephews. My grandfather went blind in his 40s. I turned 40 in November 2015 and in an effort to see the world before I can't anymore and also to raise awareness and funds for many worthy charities and organizations (Alzheimers, Parkinsons, Autism, Tourettes, ALS, Blindness, Mental Health, Rett Syndrome, Crohns Disease, Cancer, Animals, Kids). With the goal to be $500,000 in total by the end of the year. go to my crowdrise to donate www.crowdrise.com/7on7 In this podcast I talk about the amazing trip I had to South Africa. The beauty and danger of where I was staying and also I talk about the half marathon I ran there. I also talk with my guides and other runners of the marathon. My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
I am losing my eyesight to an eye disease called Choroideremia. This year I am running 7 marathons and half marathons on all seven continents. I have to run blindfolded due to my sensitivity to light. I am making a podcast of each of my races. Im running for charity and to see the world before I can't anymore. Go to my crowdrise to see all the charities Im raising money for www.crowdrise.com/7on7 In this podcast I go to London and run the full London Marathon blindfolded. I talk about the race and my thoughts and feelings leading up to it and I talk about my injuries and sickness. Plus I interview my three guides. My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
I am losing my eyesight to an eye disease called Choroideremia. This year I am running 7 marathons and half marathons on all seven continents. I have to run blindfolded due to my sensitivity to light. I am making a podcast of each of my races. Im running for charity and to see the world before I can't anymore. Go to my crowd rise to see all the charities Im raising money for www.crowdrise.com/7on7 In this podcast I run the Tokyo Marathon from February 2916. In this podcast I talk you through my feelings about running a race on a badf knee and I speak to my guides about their experience. My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
I am losing my eye sight to an eye disease called Choroideremia. It is degenerative and genetic. So others in my family have it as well. My brother and two nephews. My grandfather went blind in his 40s. I turned 40 in November 2015 and in an effort to see the world before I can't anymore and also to raise awareness and funds for many worthy charities and organizations (Alzheimers, Parkinsons, Autism, Tourettes, ALS, Blindness, Mental Health, Rett Syndrome, Crohns Disease, Cancer, Animals, Kids). With the goal to be $500,000 in total by the end of the year. I am legally blind and as part of my Choroideremia symptoms I have a sensitivity to light especially sunlight. So I run these marathons blindfolded. However, for Antarctica it was so cloudy I didn't need to. My intentions of running the full marathon change early in the run due to my health and physical condition. I talk about all of that plus I speak with my running guide and other runners and the guy that put the whole thing together. This was called the White Continent Marathon with Marathon Adventures. Its a long one but theres lots going on. I hope you enjoy it. I will be making a podcast for each marathon. Please help me reach my goal for these important charities by going to www.crowdrise.com/7on7 My website www.ejscott.com Twitter @ejscott @EJPodcast Instagram @ejscott1106 The Choroideremia Research Foundation www.curechm.org
Dr Jean Bennett is one of the few people in the United Staes and the few people in the world working tirelessly to try to find a treatment or a cure for CHOROIDEREMIA. Choroideremia is an eye disease that is passed down through genetics and degenerative until total blindness. I have it, my brother has it, my 2 nephews have it. I have been raising awareness and money for the cause for over a decade when I got diagnosed. We talk about potential for treatment, what that would take, time, money, the risks involved, where the hell this came from in the first place, how she got started in medicine at an early age and a lot more. I hope this podcast will inspire you to help out. We are looking at a big dollar amount we need to raise for a cure. But that amount many charities raise in less than a year. Please spread the word ahbout the cause and the podcast. Thans!! Twitter @ejscott @ejpodcast Instagram @ejscott1106 www.ejscott.com www.curechm.org
This week we investigate why the UK is investing in space weather forecasts. Plus how could changes in the Sun's activity affect us here on Earth? In the news, conservationists supporting the sale of a hunting licence for the endangered Black Rhino, gene therapy success for treating blindness-causing diseases, and do humans use anger strategically? Like this podcast? Please help us by supporting the Naked Scientists
This week we investigate why the UK is investing in space weather forecasts. Plus how could changes in the Sun's activity affect us here on Earth? In the news, conservationists supporting the sale of a hunting licence for the endangered Black Rhino, gene therapy success for treating blindness-causing diseases, and do humans use anger strategically? Like this podcast? Please help us by supporting the Naked Scientists
EJ Scott is an improvisor who has performed at iO West and has studied at Second City and The Groundlings. EJ is battling Choroideremia, a disease that is slowly taking his vision away. He's the subject of "Running Blind," a documentary capturing his journey of completing 12 marathons in 12 months blindfolded to bring attention to those who are afflicted with CHM.
Deborah Ann Woll ("True Blood") and EJ Scott (12 Marathons in 12 Months) join Cole and Vanessa to chat about Gordon Ramsay, The Roctuplets, Ark Music, Roller Coasters vs. Condoms, Choroideremia, Frances McDormand's wooden statue, MST3K, Survivor, DIY shows, filming sex scenes, tiny homes, shark ratings, bowling with Buffy, and Cole's eventful quest for Hostess Twinkies. Leave your answer to the Firsts question (the first organized sport you can remember being a part of) on our website for a chance to win a comfy Pop My Culture T-Shirt! And please visit ejscott.com and help support Choroideremia research!
Topics include Choroideremia, running blindfolded, tattoos, and meeting Deborah Ann Woll (the prettiest girl on TV) on an internet dating site.