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In this warm, unhurried episode of Remarkable World Commentary, Donna J. Jodhan, LLB, ACSP, MBA talks with Stephen Theberge, a totally blind writer, software builder, and former ADA compliance tester from Attleboro, Massachusetts, about a life spent at the front edge of access technology. He traces the arc from 14 years as a residential student at the Perkins School for the Blind, through a Rhode Island College double major in computer science and English literature that began as an act of stubborn defiance after an advisor told him to switch, to running his own screen-reader business from the late 1980s until the big companies and the shift to graphical interfaces made a one-man operation impossible. Along the way he remembers punch cards and a dispatcher, a Texas Instrument computer that looked like a breadbox, the Covox Speech Thing wired to his own screen reader, and a 1992 WJAR television spot he still keeps.
The second half turns personal and practical. He describes going to the Carroll Center for the Blind in 2014 while still in denial about his vision, learning JAWS and cutting an hour of email down to five minutes, then returning after losing the rest of his sight in 2019, this time calmer, and finally learning Braille, which COVID’s remote schedule gave him the time to do properly. He explains what ADA compliance testing on the MBTA actually looked like: paired with a sighted observer, riding assigned routes, checking stop announcements and ramp deployment against a checklist, and learning that the job is far more gray than black and white. He confirms he stopped that work around 2022. The conversation closes on what he’d tell someone frightened of that transition, surrender the illusion of control, stop trying to be perfect, slow down, and an open invitation to come back and talk about his four novels.
TRANSCRIPT
Podcast Commentator: Greetings. Donna J. Jodhan, LLB, ACSP, and MBA invites you to listen to her bi-weekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills, and expertise in access, technology, and information. As someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.
Donna J. Jodhan, LLB, ACSP, MBA: Hello everyone, and welcome to another episode of The Remarkable World Commentary. I’m Donna J. Jodhan. I am a lifelong disability advocate and one who sees the world mainly through sound, touch and stubborn optimism. I am a law graduate. I am an accessibility consultant, an author, a blogger, and a lifelong barrier buster who also happens to be blind. You may know me from a few headline moments, as in November of 2010, I won the landmark Charter case that forced the Canadian government to make its websites accessible to every Canadian, not just to sighted ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law. And most recently, on June the 3rd, 2022, I was greatly humbled by Her Majesty’s Platinum Jubilee Award for tireless commitment to removing barriers. When I’m not in a courtroom or in a committee room or in a pottery studio, you’ll find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. I guess I am a very busy person in many ways, and everything I do circles one goal, that being to turn accessibility from an afterthought into everyday practice. I invite you to think of this show as our shared workbench, where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today’s conversation, let me shine a spotlight on today’s guest, a change maker whose work is every bit as remarkable as the world that we are trying to build. Now, I am pleased to introduce to you Steve, and I hope I have your last name pronounced correctly. Steve Theberge. Welcome to the remarkable world of commentary. I am most privileged and happy to have you. You are a change maker whose work is every bit as remarkable as a world that we are trying to change. So welcome to our podcast.
Stephen Theberge: Thanks for having me. I love their stubborn optimism. I can relate to that.
Donna J. Jodhan, LLB, ACSP, MBA: I try my best.
Stephen Theberge: All we can do.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So Steve, Stephen, let’s welcome you. And let’s start at the very beginning. You were born in Lewiston, Maine in 1963, and your family moved to Attleboro — I hope I have this correctly — Massachusetts, when you were still an infant. More than 60 years later, Attleboro is still home. What has kept you rooted in that one place for a lifetime?
Stephen Theberge: Well, I think because, of course, I have family here and it’s not a big city. It’s a suburb. And I went to school in Providence, Rhode Island when I went to college. So it was very close. And I can take the train to Boston without having to live in Boston. And I just grew up here. And there’s a lot of things that I like about a suburb, and it just feels like home to me.
Donna J. Jodhan, LLB, ACSP, MBA: I visited Boston many years ago and I really, really liked it. So I think it’s great when one could stay in one place for so long. Hey.
Stephen Theberge: I got lucky. Yeah. I mean, because moving is never fun, you know?
Donna J. Jodhan, LLB, ACSP, MBA: No, it isn’t. Now, you began at the Perkins School for the Blind in Watertown in 1968 as a residential student at roughly five years old. And then you stayed until you graduated in 1982. That is 14 years of your childhood. Take our listeners inside that experience. And what did Perkins give you that you still carry with you today?
Stephen Theberge: Well, I remember the first night. Of course, I’m sure my parents explained it, but I thought they needed me there. But I made friends pretty quickly. I still spoke French and I knew enough English to get by. I guess Perkins gave me a lot of critical thinking. That stubborn optimism. I don’t know if they like the stubborn as much, but they taught me to persist and to, you know, think for myself and to not give up on things. And also we learned a lot about different cultures. We had teacher trainees from various cultures and they didn’t tolerate any racial slurs or anything. So we learned early, even beyond disability, that we had international days. So we’d learn about other cultures. And it just was a natural part of growing up. And once I got over the first hump of being away from home, it just felt like my home. You know, I made a lot of friends. I have some friends I still have from that.
Donna J. Jodhan, LLB, ACSP, MBA: That sounds really interesting though. I mean, it sounds like a really nice experience for you, right?
Stephen Theberge: Yeah. It was. I mean, I wouldn’t trade it in because at the time it was really for me. I’m not going to get into that debate, but it was the best education because they weren’t ready in the public schools where I was to do blind stuff at the time.
Donna J. Jodhan, LLB, ACSP, MBA: You know, that’s very true. Like in the 60s and 70s, many schools were not ready. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: So, you know, these schools gave us good foundations. And I like to hear stories like that. You know, I want to stay with those Perkins years for a moment, because I think many of our listeners have no idea what residential school life is actually like. You were a little boy away from your parents and your siblings for much of the year. How did your family stay close to you across that distance? And what were those homecomings like?
Stephen Theberge: Yeah, that was an advantage to living closer. I could go home every weekend. There were students that couldn’t go home because they were too far away, so they had to. So the homecomings were nice when I was a little boy. Of course, my mother would make me a chocolate cake on Saturdays. But yeah, as I got older — and I’ve talked to my siblings about this — we kind of like the summers, you know, they had their own friends. So I was kind of alienated. I mean, they did their best, but I wasn’t included in as many things. And I think part of that too — at the time, there wasn’t as much inclusion or talk about, you know, awareness. So, you know, I don’t blame anyone for that, but it could be lonely going home sometimes because, you know, I’m gone nine months out of the year and they have their friends. And I had a few friends in the neighborhood, you know, in the summer, but it was hard to really make friends in that neighborhood. You know, my friends were really at school because I saw them most of the year.
Donna J. Jodhan, LLB, ACSP, MBA: I guess, you know, it was sort of like — not exactly a double life, but like two different lives in many ways. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Oh, gosh. In 1987, you graduated from Rhode Island College with not just one, but two bachelor’s degrees, one in computer science and one in English literature. Wow. With a focus on creative, technical, and analytical writing. Those are two very different ways of using the mind. Why did you refuse to choose between them, and how have both halves served you since?
Stephen Theberge: Well, I always love retelling this story because it’s a great stubborn optimism story. In the beginning, when I was in college, I had some vision, so I was kind of in denial about my… So for the first year in computers, I was doing pretty badly. I was one class away from — I had to pass a statistics course, and if I didn’t, I was out. And I was on my second go round, and my advisor — I don’t know if he did it deliberately or just didn’t think — he said, you know, I think you should find another major.
Donna J. Jodhan, LLB, ACSP, MBA: Oh no.
Stephen Theberge: And I was like, you know, like English or something. So I went through the college stuff and I was like, hey, I can get an English degree and not take all these electives. So I’m going to double major. And so now I thank him for that, pushing me. I really think at the time he was trying to help me and say, go think about doing something else. But I said, I’m going to finish this computer science degree. And the writing stuff really, to me, made a connection between, you know, being a tech person and talking tech, and being able to communicate without having that technical talk that people aren’t going to understand. And just reading, like writing, it helped me with wanting to be a writer, you know, taking English classes and learning different kinds of styles of writing. So, some people — it really is actually not as strange a mix as it would seem. You know, you would think on the surface. They actually complement each other, I think.
Donna J. Jodhan, LLB, ACSP, MBA: So you’re not sorry that you…
Stephen Theberge: Oh no, I probably wouldn’t change anything. Yeah. But what really drove me was the anger of saying, you know, how you want me to change majors. And it was not really a conscious thing at the time. I said, well, okay, I’ll just do two majors, because it was like, you know, I can take all these electives. That would have been great. But I said, hey — so I don’t know, it just happened to fall into place. And no, I have no regrets.
Donna J. Jodhan, LLB, ACSP, MBA: Why is your advisor surprised or was he?
Stephen Theberge: I don’t know if my advisor even ever knew. I don’t know if they left later, or — because I didn’t really talk to him later on in the… I did, because I was pretty much doing all right. You know, I think in the beginning they’re more… I don’t know if he was there when I graduated, but I would have liked to say, yeah, I took your advice. I got two degrees, but…
Donna J. Jodhan, LLB, ACSP, MBA: That’s okay too.
Stephen Theberge: Yeah. Thanks for the advice. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, goodness. Now, here is something I would love you to unpack for our listeners. Okay. You were studying computer science in the early to mid 1980s, long before those screen readers and the mainstream accessibility we know today. How on earth did you actually do the coursework, and what did access look like for a blind college student back then?
Stephen Theberge: Well, I did have a friend who went to another school, and the text to speech was just starting. He was totally blind. He would not have made it without text to speech. Now, I was fortunate at that time to have some vision. I used a closed circuit television — or they used to call it a VisualTek. Yes, especially with the English, there was a lot of reading and learning how to type. So it was like I didn’t always have to see what was on the screen. Of course it was a struggle, but it was definitely a struggle. And I know some people would notice, like I had my face an inch away from the screen. I don’t know, I guess I was very determined. But no, they didn’t really have — I was there even really before the internet. I mean, it wasn’t — PCs were just starting. And so it was totally like on the edge of — just everything was starting. And that was exciting to me, because the timing was awesome, because I could see things were hitting, you know, the PC came out. And yeah, we didn’t talk about accessibility at all in those days, but they did have some rudimentary text to speech. And I know in the beginning they had a whole bunch of different options. And, you know, finally certain companies made it, like, you know, JAWS and of course the Apple computers. But back then it was like the Wild West, you know. But when I was in school, the personal computers weren’t a common thing. I had a Texas Instrument computer in my house, and it was like one of the first ones. You know, it had nothing. It had 32K RAM and, you know, it looked like a breadbox. And you put this big card in there for expansion — memory expansion. And it was one-sided, 90K floppy disk.
Donna J. Jodhan, LLB, ACSP, MBA: Right.
Stephen Theberge: It was totally — but I guess, to me it was exciting. So I really loved being in that field at the time.
Donna J. Jodhan, LLB, ACSP, MBA: And I guess we’ve come such a long way, right, from that.
Stephen Theberge: Unreal. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: It’s unreal. Like, I mean, if you talk to today’s generation about what you just described, they wouldn’t know what we talked.
Stephen Theberge: Yeah. I remember I’d bring the punch cards to the dispatcher.
Donna J. Jodhan, LLB, ACSP, MBA: And.
Stephen Theberge: Yeah. And then I would go and have coffee and come back and pick up my readout. It was like totally different. And then finally they got terminals in the college. So you didn’t have to do the punch cards anymore. But we never got to see the computer in the basement. It was like a magical Wizard of Oz thing. It’s like, don’t — you can’t see that.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. It reminds me of the very first Kurzweil machine. I don’t know if you’re familiar. That was so big.
Stephen Theberge: Yeah, it had all these keys on it, and it was unreal. Yeah. Those were exciting times. Growing up, it was like — it just everything opened up, and it was an exciting time for me to be in computers.
Donna J. Jodhan, LLB, ACSP, MBA: Wow. Now, from the late 1980s through to the beginning of the new millennium, you started and ran your own business building software for blind and visually impaired people. Tell us about that venture in your own words, and what did you build and what were you trying to solve?
Stephen Theberge: Well, at the time I was concerned about the cost, you know, because everything was expensive. Yeah. And I did come up with an alternative. And I actually was able to test it when I did have surgery in 94. I had no vision. And I said, oh, this really works, you know, because I could see a little. And the hardest part was really getting the word out. Like I said, there were companies and text to speech, you know, different devices out there — there were a whole bunch of them. I had a whole catalog of all kinds of… And that’s when it was like the Wild West, like I said earlier. So at the time, it was really exciting. And so by the time the early 2000 hit, computers changed. The big companies and standards are good, I think — I think we need, like, things settled down, and the big companies kind of took over. So it really wasn’t possible for me as an individual to keep developing a screen reader. But I had a good run at it. I mean, it was exciting to get to talk to people overseas and, you know, emails and online. The world was so different than it was, you know?
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, yeah, yeah. How many years did you stay in that area?
Stephen Theberge: Probably a good five. Five to 10. Really? Yeah. I think in the 2000 came. Even the software changed where I couldn’t really do it visually anymore because it was all GUI and there wasn’t access tools.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: Yeah. I commend anyone that’s doing software development today, which I’m not really doing anymore. But it wasn’t really possible for me to do it anymore because it was, you know, so visual and there was just no way I could keep up. And again, the big companies — you know, JAWS was really exploding. Which is good. I mean, you know, a lot of people criticize it, but we do need standards. And so now we have NVDA, JAWS and VoiceOver pretty much of the basics for most people.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is a good history lesson for anyone listening who is of the younger generation, you know, because they have no clue where we all started and where we are today. They just think, well, you know, it just happened magically.
Stephen Theberge: But — and computers are slow. Dial up.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I mean, dial up.
Stephen Theberge: I remember Napster — you’d be like eight hours to download an album, and now today it takes like 10 seconds to up… you know, two or three minutes to update my phone, and it’s like, we’re impatient. We get so spoiled.
Donna J. Jodhan, LLB, ACSP, MBA: And we didn’t have YouTube in those days. No MP3s and all the players. My God, I could go on and on, but let’s keep going here. Something you have said about those years really stayed with me. And this is that the promise of access and the actual affordability of access were two entirely different things. Our community still lives with that gap today. What did you see back then and how much of it has really changed?
Stephen Theberge: Well, back then it was like, you know, open. It was open, you know, free for all — the development was out. Like I said, I couldn’t name the synthesizers that were out there. Yeah, yeah. I remember I used the Covox Speech Thing, I think it was called. It was a speaker, and that’s what I used for my screen reader. But there was so many options for, you know, like text to speech. I know people criticize… But really the iPhone really is — it’s expensive, but it is a computer. And if you get enough training on it, it really is access for all. And you’re not paying extra like you do, you know, you buy a PC and then you go buy JAWS. I do like the fact that JAWS has the subscription. I know a lot of people complain about that, but that really helped me, because I know that Voc Rehab wasn’t going to pay for it the rest of my life, which I don’t need them to anymore. And, you know, a hundred a year, it’s a lot, but it’s not like $600 at once. I mean, so I think, you know, there’s a lot of criticisms to go around. And, you know, you read all the time online about — some people are very negative, and there’s fair criticism. You know, you could probably have a whole show just on that. But yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, people tend to criticize more than look at, you know, the glass being half full as opposed to half empty. And I try to tell them, you know, come on, folks, grow up, you know.
Stephen Theberge: Well, if they remember what it used to be like, it was like no access almost, you know?
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah. And then, you know, like we’ve come from — did you know Braille in those days?
Stephen Theberge: No, that was an interesting — now, I remember I had asked to learn Braille, and I guess one of the teachers said, oh, you won’t have to worry about that, your prognosis is… Now, I think if I had one, you know, I just didn’t question as much back then. If I had told my parents, they might have advocated for me to get Braille. So I learned it later in life and I wish I had learned it. But then again, I don’t know, maybe I wouldn’t have really been that interested in it. You know, because the mind, you know, you go to your vision, it’s just a natural thing. And so it might not have… You know, it’s easy to look back and say, I should have taken — I think it would have been nice if I had the opportunity, but I’m getting along pretty well with the Braille now.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I think a lot of people misjudge Braille, but I know for me, I really, you know, embrace it. I really appreciate it.
Stephen Theberge: Well, they always say we have technology, and it’s like, bingo, you can use a Braille display and it’s expanded. It’s not dying. It’s like it’s not Braille books anymore. And you know, you can do things in any language. And it’s really — I think it opens the world. And another reason I like, you know, talking about the glass half full or half empty — it’s like if I ever did lose my hearing, Braille would be the only way I could communicate with the outside world.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I never thought of that. But you’re right. Very true. What became of that software in the end? I ask because I think our community, you know, loses its own technological history very quickly. Tools that mattered, you know, enormously to the people who use them simply stop running one day, and then nobody writes it down.
Stephen Theberge: Yeah. It basically became obsolete because, of course, they had DOS back in the day. So that…
Donna J. Jodhan, LLB, ACSP, MBA: Oh, yeah.
Stephen Theberge: I actually knew somebody about ten years ago that was still using DOS. And of course, all they can do is email. And I said, if your computer ever does break down, you’re going to have no choice. You’re going to have to go to Windows. But yeah, it just became obsolete because, like I said, I couldn’t keep up with developing it. And then software — the tools, software tools started getting more expensive. So it was financially getting out of reach where I could keep up. And it was like everything started being done by teams, and there was just no way I could keep up with that.
Donna J. Jodhan, LLB, ACSP, MBA: So basically, you were forced to really change course, right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Okay. Among the materials that you share publicly, you have kept a television appearance from WJAR Channel 10, right, dated February 28th, 1992. Right. That is 34 years ago. What was that moment like? And what does it mean to you that you have held on to it all this time?
Stephen Theberge: Well, at the time it was my first appearance on TV showing a screen reader. And I just thought, you know, this could be the beginning of something big. It wasn’t. I mean, it’s kind of forgotten and it’s just a nostalgic… But it was just the excitement of the times. It was like, wow, we actually got noticed, because, you know, I was sending press releases and it was like the only station that said, oh, well, we’ll send someone over and interview you. So it was like — because I did it all myself, you know, sending this stuff out — and, you know, that anyone even answered me, it was amazing. Because that was the only station that said, you know — nobody else. And so it was exciting. I thought maybe this could be the beginning of something really big. So I was a big dreamer. And, you know, I don’t have any regrets, but I thought, man, this is going to be great.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. But sometimes, you know, if you believe you can achieve. Right?
Stephen Theberge: Yeah. Oh, yeah.
Donna J. Jodhan, LLB, ACSP, MBA: And this is what, you know, I’m presently working on to teach to kids preparing to leave high school and young adults, if you believe you can achieve. But you’ve got to have the dream first of all. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: You know, sounds like you were a big dreamer. Sorry. Go ahead.
Stephen Theberge: It’s a matter of saying, you know, and it does sound corny. If at first you don’t succeed, try, try again. But it’s so true. There’s that stubborn optimism again. Yeah. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: No. You’re right, you’re right. In 2014, you went to the Carroll Center for the Blind for vision rehabilitation, to learn to, you know, compensate for vision that was getting worse and to get current with assistive technology. What made you decide that it was time to go?
Stephen Theberge: Well, I couldn’t live in denial anymore about my vision loss. And the doctors knew that — they didn’t have a date, that I was losing my vision. There was nothing they could do about it. And when I got to the assessment at the Carroll Center, it was a two-week assessment. And, you know, they said, okay, how do you do email? And, you know, I have my face literally almost on the screen.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And they say, you gotta learn JAWS. And I’ll tell you, from taking an hour to read emails to have it done in five minutes with JAWS, I said, yeah, I’m in. You know, and then other techniques, daily techniques, blindness, non-visual skills — I never thought about it. You know, they didn’t really talk about that at Perkins, but Perkins wasn’t really — it was more academic learning. You know, people learn Braille. They… I had large print, but I didn’t really… They didn’t talk about losing vision or vision loss at Perkins. We lived with it. You know, there were blind people. But it wasn’t a conscious thing. And I think a lot of the low vision, it’s like the denial. But when you start bumping into things — I ran into a branch and it knocked my glasses off, and I had… it was like it was a week away. I said, yeah, I think it’s time to go.
Donna J. Jodhan, LLB, ACSP, MBA: So you felt a bit of pain before you said time to go. Right? Yeah. And that’s always the case with most people. They don’t want to admit that they can’t see or they’re losing it. I guess maybe it’s pride. Maybe it’s not concern but fear. Right.
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: So it’s a bit of everything. And then 2019, you lost the remainder of your vision and you returned to the Carroll Center for what you have described as a refresher in honing your, you know, non-visual skills. And Stephen, you were already experienced, capable blind man by then. What is it like to go back and be a student again at that stage of your life? And what would you say to someone who is frightened of exactly that transition right now?
Stephen Theberge: Well, I would say I was fortunate. Like when I did lose my vision, I said, I’m going to need some momentum. You know, I’m kind of rusty. I was using my cane since 2014. But I remember I went home that day — I came home, I was traveling, and it took me an hour to get home when it normally should take 25 minutes. I mean, I did it. So I said, okay, I’m going to get some one-on-one O and M, you know. But then they were like, maybe you should go back to the Carroll Center. And I said, no, I don’t want to take out time from work and all that. The work — they were great. When my work was at the MBTA, they were like, yeah, you take your time, you know, we’ll still be here. So the fear — I think the first time there was a lot going on in my life, I was grieving. I was a nervous wreck. I did learn a lot, but the second time I was like, oh, I got this. And it was just so smooth. And I said, I wish I had had that the first time. And people say, well, you’re so courageous, but I think sometimes you just have to surrender — whatever you define as surrender — and say, I’m not in control. So, and I lost my vision at the end of August in 2019. And then of course I had to stop going in because COVID hit. So I was doing a lot of remote, which was…
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: So, but to me, COVID was like, yeah, it’s too bad we can’t go out. But it was like, you know, people always like to think they’re in control. So I was like, well, I wasn’t in control before COVID. So to me, COVID wasn’t a big deal. It’s like, well, I’m still going to learn skills. I can do it from home. And I would have never learned Braille. I had more time at home, one on one, which I would have never got in person at the center, you know, because it would have been 12 weeks. Time’s up. So they really stretched it out. So I was more like — the second time I said, yeah, I really want to learn Braille grade two. And it’s that motivation, and it’s not giving up in the fear. Yeah, it’s hard to say don’t be afraid, but you kind of have to find that mindset where you’re just going to push through it. It’s not that you’re not afraid, but you just say, well, I’m going to do my best, and stop beating yourself up. Like, that was another thing — I was always trying too hard to be perfect. And there was a teacher there, she was actually teaching special ed, and she was losing her vision, and she was like, you know, [unclear 00:33:33] just slow down and enjoy — enjoy it, what you’re doing here. And it’s like, I never forgot it. It’s like, slow down. Yeah, take your time. There’s no rush. It’s no race. Do your best. And because I was like — the assessment, I was like, I just want to get through this. You know, it’s like you’re going to be here the same amount of time. You may as well enjoy it as much as you can enjoy something like that.
Donna J. Jodhan, LLB, ACSP, MBA: I think it has to do a lot with maturity, confidence in who you are and to know that you want to do it. I mean, a lot of people are definitely afraid, especially when they’re losing their vision, right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: But, you know, I think this is a great story. You know, now you work with JAWS on Windows and with VoiceOver on iOS. You have used an assistive technology across more decades than almost anyone listening to this now. When you sit down at a computer today, what feels genuinely miraculous compared to where you started and what still frustrates you?
Stephen Theberge: I think the biggest thing — if I hadn’t gone to the Carroll Center and learned JAWS, I would have never written my first book. I was starting to write my first book, but it wasn’t going to happen either. I’d have to have someone read it to me. So JAWS gave me that liberation. And yeah, what’s frustrating sometimes is when things don’t work the way they’re supposed to, or it’s not speaking, or…
Donna J. Jodhan, LLB, ACSP, MBA: Right, right.
Stephen Theberge: Websites, of course. So there are a lot of frustrating things. I could probably make a big list, but it’s just like things don’t work the way they’re supposed to and you have to… That’s one thing I’m glad — you know, a lot of people, it’s like, they don’t have that troubleshooting background that I had. So I’m not going to give up. But I understand where people are frustrated, because it’s like, it shouldn’t be that difficult. And it’s a lot better than it used to be. But there’s still a lot of things that have to be worked on.
Donna J. Jodhan, LLB, ACSP, MBA: And then you have, you know, like adaptive technology, not keeping up with the changes, and then it breaks and they say, oh God, where do I get the training? Who is going to help me out? And you still have a lot of people who are afraid of our technology, right? Yeah. But it’s not as bad as, say, maybe two or three years ago. I mean, I have a technician who’s really not afraid. He takes the bull by the horns. But you still have people who say this thing talks. I don’t know what to do. Right.
Stephen Theberge: Yeah. It’s different. It’s a different tolerance. I mean, I know somebody, they self-taught themselves. They never went to a training center. They [unclear 00:36:27] all their life. They got JAWS and just pretty much went through the menus. And, you know, you can do it that way. It’s going to take time and persistence. But, you know, some people say, well, I get confused in the menus, and it’s like, I get it. But, you know, everyone has a different set of, you know, what they’re going to tolerate. But I mean, she taught herself French Braille and we do French stuff together. It’s really cool.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I heard about French Braille.
Stephen Theberge: Yeah. They — I guess the old days, that… Oh, that’s a whole other issue with the UEB. And you get all kinds of opinions on that. And it’s like, well…
Donna J. Jodhan, LLB, ACSP, MBA: [unclear 00:37:10] my Braille, and yeah.
Stephen Theberge: [unclear 00:37:13] has always been changing. It’s not like it just changed overnight. It’s a big change, I get it. And that was what I was grateful for in vision rehab — is learning the old and the new, which I didn’t think you’d be in the old contracted. Yeah, there’s differences, but they were like, you should really learn both, because the old Braille isn’t going away. There’s going to be a lot of old stuff around.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And to me, I cannot… I mean, writing it might be different. I probably should do more writing, but I can pretty much read UEB and the other older Braille without much difficulty. I like the old Braille, I do. A lot of people say… I like the old. I like the [unclear 00:37:50] and, you know, and into the and things like that. That’s kind of neat, which they don’t do when you leave.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is really — I think would be really great for our listeners to know a lot about, you know, like you’ve come a long way history wise, to me. Yeah. No. Folks, starting to wind down. But here’s a question for you. Let’s talk about transit, because this is where your advocacy became a job. You have worked as an ADA compliance tester for the Massachusetts Bay Transportation Authority. Tell our listeners what that work actually involves, and bring us up to date on where things stand for you with the MBTA today.
Stephen Theberge: Well, basically what they do is they pair a disabled person with an observer who usually — they have perfect sight. They do a lot of documentation with things I couldn’t read, like the bus number, and it’s all documented, the route. They give you a route and you… I used to say I was an undercover, but I wasn’t really a cop. But it was basically saying, are they doing the stop announcements? There’s a whole checklist of things. And sometimes they say, ask them to deploy the ramp.
Donna J. Jodhan, LLB, ACSP, MBA: Okay.
Stephen Theberge: And things like — which I don’t usually use — but it’s testing all the systems. And you have to know, like, if the stop announcements aren’t working, what are they supposed to do? They’re supposed to announce the major connections, and there’s a whole checklist. And then if there are violations, it’s more educating, you know. I mean, if someone chronically has issues with that, they will fire them. But they want to educate, because it all came about from Boston Center for Independent Living. There was a class action lawsuit.
Donna J. Jodhan, LLB, ACSP, MBA: Okay.
Stephen Theberge: And they’re still committed to it. I think pretty much the lawsuit is resolved. And they didn’t really do it for financial. They just said, we want this to be accessible. And there’s a whole video on how it started and the history of it. So I was part of that, you know, running the system. And what we would do at the end, especially if there were violations, is like, is this a flagrant violation? And we had to be on the same page. So it was like, you know, I had to write my own words. I could say, oh, I agree with [Scott? 00:40:31], you know what he says — I know, you got to write up what happened. So we had to have a consensus. And I learned a valuable lesson. One day I made a bad assumption. There was a bus driver and I could tell he had an accent. And I asked him, you know, do you stop at so and so? And apparently — the observer said later, oh, he nodded. So it’s kind of — there’s a lot of gray. There’s a lot of gray in that job. Because I said it must be a language barrier. And he said, no, he understood you. He nodded. I said, obviously that’s not going to help you, you can’t see. But so these things are not always black and white. And he said, well, we’ll write it down, what happened, but we’re not going to call it a violation. It’s like, it’s very, very gray, because you don’t want to sit there and say, these are all the rules. And, you know, there are things that are more important than others. I can’t remember specifics. You know, some things are more serious than others. Like, missing your stop is probably more important than whether he nodded or not. And so I think the bus driver did say, you know what, that we were at that stop. So it’s all these things to put together and things to remember.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And no two — you know, it’s not a boring job, because it’s very rare you have two days that are the same. It’s all, you know, the routes. You start, you kind of learn, because there are certain problem areas that you’re going to do over again, you know, maybe. But it’s like it’s never the same. You know, just when you think you’ve seen and heard it all, something comes up that you never thought about. So it was exciting. I’m not doing it anymore, but I think I stopped in ’22. But yeah, I enjoyed it. And that was the best. You know, I know we were talking about Perkins and they were talking about open house. They used to have the kids, you know, sit around, and they’d bring people in, and it was like an exhibit. And someone said last night, every day is an open house for us blind. You know, we have to perform every day. So it was really interesting. I met a lot of nice people, a lot of interesting people. And yeah, you meet some people that aren’t so nice, but I thought it was great just getting out and with good exercise, you know, because I’d be walking a lot.
Donna J. Jodhan, LLB, ACSP, MBA: I can hear in your voice that you really, really enjoyed it.
Stephen Theberge: The passion. Because I think, you know, we have so many transportation issues. I don’t know how… I know you were talking about Canada, and I’d be interested to compare notes on that. Like, what’s the transportation and accessibility on websites? And yeah, so to me, you know, that’s one of the main things of independence. And yeah, it’s nice to get a ride, but it’s nice to say I’m going to go to… And that’s another reason — you were saying, you know, I can go anywhere. I can go to Boston. It’s only an hour away. It’s a little time commuting. But then I can come home and it’s nice and quiet, you know? That’s why I like living here.
Donna J. Jodhan, LLB, ACSP, MBA: I love your attitude. And I think, you know, we’re to the end of your interview, but I would invite you to come back, you know, one day, not too long in the future to talk more about this. I’ve truly enjoyed, you know, your descriptions of Perkins and the Carroll Center and, you know, everything that you’ve done. I think it’s great. And I know that our listeners would truly appreciate and enjoy this interview. So I want to thank you for having taken the time to be with us today. And please, if ever you wanted to come back and talk about, you know, your authorship, what you’ve written, what are you doing? But tell me in just a short minute or so, what do you think the future is for our kids?
Stephen Theberge: It depends what’s going on that day in the news. I think, you know, I always hear about people talk about the youth of today, and I don’t know, I haven’t run across… you know, I’ve run across a lot of nice people. You know, they say they don’t have any respect. And, you know, I know some adults that could work on that, and they’re older than I.
Donna J. Jodhan, LLB, ACSP, MBA: Yes, yes, yes.
Stephen Theberge: I’m kind of scared for the future. I think, you know, there are a lot of things — I don’t know if I’d want to be a kid growing up today, because the world is just so overwhelmed with…
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: You know, it’s like we didn’t have that. We had the news once a day and we didn’t have 24/7. And the social media, it has its advantages, but it’s like just too much. I mean, you really — we need… My dad invented it before social media. Like, let’s have some electronic peace. You turn off the TV and say, you know, just sit here. And it’s like, yeah, you can hear the birds. Or we can still do that, but it’s harder because we’re so distracted. And for what? I don’t know. So I’m hopeful for the kids of today. But then again, I think if people have… you know, I understand there’s a lot of things to be afraid of and to worry about. But I mean, we got through the Cold War, and, you know, we thought the world was coming to an end when we were growing up.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And here we are.
Donna J. Jodhan, LLB, ACSP, MBA: It was a pleasure, Stephen. I really, really enjoyed it. And like I said, if ever you wanted to come back, please get in touch with me and let me know. Okay.
Stephen Theberge: That’d be great. I’d love to talk about my books. I guess that’s the only thing we haven’t talked about. Really?
Donna J. Jodhan, LLB, ACSP, MBA: No, we haven’t, and I’d like to talk about it. So maybe sometime early in the new year, I’ll contact you and you could come back and talk about it.
Stephen Theberge: Sounds good. I can tie it all together for you.
Donna J. Jodhan, LLB, ACSP, MBA: I’ve really enjoyed this interview because this is one of the first interviews where someone is able to talk about the, what I call the good old days, you know.
Stephen Theberge: Good old days.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, the good old days. And I yearn for that sometimes. I say, I wish I could sit on a beach with my book and leave me alone.
Stephen Theberge: Yeah, absolutely. Yeah. I like the old days. We’d be waiting for the next week, and it’s like, last week, as you recall. And it’s like, I missed that. Now it’s like we watch seven episodes of a show.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah.
Stephen Theberge: There’s no — there’s no drama anymore. It’s like it’s no anticipation.
Donna J. Jodhan, LLB, ACSP, MBA: No. So thank you very, very much. And we’ll be in touch with you early in the new year to see if we could arrange another interview with you. How’s that?
Stephen Theberge: Sounds good. Sounds great. Thanks, Donna.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you, Steve. And you take care.
Stephen Theberge: All right. You too.
Donna J. Jodhan, LLB, ACSP, MBA: All right. Bye bye now.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at donnajodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.
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Related
Remarkable World Commentary Episode #105: Interview with Stephen Theberge, Science-Fiction Author and Accessibility Tester
🎙️ Listen to this Podcast.
In this warm, unhurried episode of Remarkable World Commentary, Donna J. Jodhan, LLB, ACSP, MBA talks with Stephen Theberge, a totally blind writer, software builder, and former ADA compliance tester from Attleboro, Massachusetts, about a life spent at the front edge of access technology. He traces the arc from 14 years as a residential student at the Perkins School for the Blind, through a Rhode Island College double major in computer science and English literature that began as an act of stubborn defiance after an advisor told him to switch, to running his own screen-reader business from the late 1980s until the big companies and the shift to graphical interfaces made a one-man operation impossible. Along the way he remembers punch cards and a dispatcher, a Texas Instrument computer that looked like a breadbox, the Covox Speech Thing wired to his own screen reader, and a 1992 WJAR television spot he still keeps.
The second half turns personal and practical. He describes going to the Carroll Center for the Blind in 2014 while still in denial about his vision, learning JAWS and cutting an hour of email down to five minutes, then returning after losing the rest of his sight in 2019, this time calmer, and finally learning Braille, which COVID’s remote schedule gave him the time to do properly. He explains what ADA compliance testing on the MBTA actually looked like: paired with a sighted observer, riding assigned routes, checking stop announcements and ramp deployment against a checklist, and learning that the job is far more gray than black and white. He confirms he stopped that work around 2022. The conversation closes on what he’d tell someone frightened of that transition, surrender the illusion of control, stop trying to be perfect, slow down, and an open invitation to come back and talk about his four novels.
TRANSCRIPT
Podcast Commentator: Greetings. Donna J. Jodhan, LLB, ACSP, and MBA invites you to listen to her bi-weekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills, and expertise in access, technology, and information. As someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.
Donna J. Jodhan, LLB, ACSP, MBA: Hello everyone, and welcome to another episode of The Remarkable World Commentary. I’m Donna J. Jodhan. I am a lifelong disability advocate and one who sees the world mainly through sound, touch and stubborn optimism. I am a law graduate. I am an accessibility consultant, an author, a blogger, and a lifelong barrier buster who also happens to be blind. You may know me from a few headline moments, as in November of 2010, I won the landmark Charter case that forced the Canadian government to make its websites accessible to every Canadian, not just to sighted ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law. And most recently, on June the 3rd, 2022, I was greatly humbled by Her Majesty’s Platinum Jubilee Award for tireless commitment to removing barriers. When I’m not in a courtroom or in a committee room or in a pottery studio, you’ll find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. I guess I am a very busy person in many ways, and everything I do circles one goal, that being to turn accessibility from an afterthought into everyday practice. I invite you to think of this show as our shared workbench, where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today’s conversation, let me shine a spotlight on today’s guest, a change maker whose work is every bit as remarkable as the world that we are trying to build. Now, I am pleased to introduce to you Steve, and I hope I have your last name pronounced correctly. Steve Theberge. Welcome to the remarkable world of commentary. I am most privileged and happy to have you. You are a change maker whose work is every bit as remarkable as a world that we are trying to change. So welcome to our podcast.
Stephen Theberge: Thanks for having me. I love their stubborn optimism. I can relate to that.
Donna J. Jodhan, LLB, ACSP, MBA: I try my best.
Stephen Theberge: All we can do.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So Steve, Stephen, let’s welcome you. And let’s start at the very beginning. You were born in Lewiston, Maine in 1963, and your family moved to Attleboro — I hope I have this correctly — Massachusetts, when you were still an infant. More than 60 years later, Attleboro is still home. What has kept you rooted in that one place for a lifetime?
Stephen Theberge: Well, I think because, of course, I have family here and it’s not a big city. It’s a suburb. And I went to school in Providence, Rhode Island when I went to college. So it was very close. And I can take the train to Boston without having to live in Boston. And I just grew up here. And there’s a lot of things that I like about a suburb, and it just feels like home to me.
Donna J. Jodhan, LLB, ACSP, MBA: I visited Boston many years ago and I really, really liked it. So I think it’s great when one could stay in one place for so long. Hey.
Stephen Theberge: I got lucky. Yeah. I mean, because moving is never fun, you know?
Donna J. Jodhan, LLB, ACSP, MBA: No, it isn’t. Now, you began at the Perkins School for the Blind in Watertown in 1968 as a residential student at roughly five years old. And then you stayed until you graduated in 1982. That is 14 years of your childhood. Take our listeners inside that experience. And what did Perkins give you that you still carry with you today?
Stephen Theberge: Well, I remember the first night. Of course, I’m sure my parents explained it, but I thought they needed me there. But I made friends pretty quickly. I still spoke French and I knew enough English to get by. I guess Perkins gave me a lot of critical thinking. That stubborn optimism. I don’t know if they like the stubborn as much, but they taught me to persist and to, you know, think for myself and to not give up on things. And also we learned a lot about different cultures. We had teacher trainees from various cultures and they didn’t tolerate any racial slurs or anything. So we learned early, even beyond disability, that we had international days. So we’d learn about other cultures. And it just was a natural part of growing up. And once I got over the first hump of being away from home, it just felt like my home. You know, I made a lot of friends. I have some friends I still have from that.
Donna J. Jodhan, LLB, ACSP, MBA: That sounds really interesting though. I mean, it sounds like a really nice experience for you, right?
Stephen Theberge: Yeah. It was. I mean, I wouldn’t trade it in because at the time it was really for me. I’m not going to get into that debate, but it was the best education because they weren’t ready in the public schools where I was to do blind stuff at the time.
Donna J. Jodhan, LLB, ACSP, MBA: You know, that’s very true. Like in the 60s and 70s, many schools were not ready. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: So, you know, these schools gave us good foundations. And I like to hear stories like that. You know, I want to stay with those Perkins years for a moment, because I think many of our listeners have no idea what residential school life is actually like. You were a little boy away from your parents and your siblings for much of the year. How did your family stay close to you across that distance? And what were those homecomings like?
Stephen Theberge: Yeah, that was an advantage to living closer. I could go home every weekend. There were students that couldn’t go home because they were too far away, so they had to. So the homecomings were nice when I was a little boy. Of course, my mother would make me a chocolate cake on Saturdays. But yeah, as I got older — and I’ve talked to my siblings about this — we kind of like the summers, you know, they had their own friends. So I was kind of alienated. I mean, they did their best, but I wasn’t included in as many things. And I think part of that too — at the time, there wasn’t as much inclusion or talk about, you know, awareness. So, you know, I don’t blame anyone for that, but it could be lonely going home sometimes because, you know, I’m gone nine months out of the year and they have their friends. And I had a few friends in the neighborhood, you know, in the summer, but it was hard to really make friends in that neighborhood. You know, my friends were really at school because I saw them most of the year.
Donna J. Jodhan, LLB, ACSP, MBA: I guess, you know, it was sort of like — not exactly a double life, but like two different lives in many ways. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Oh, gosh. In 1987, you graduated from Rhode Island College with not just one, but two bachelor’s degrees, one in computer science and one in English literature. Wow. With a focus on creative, technical, and analytical writing. Those are two very different ways of using the mind. Why did you refuse to choose between them, and how have both halves served you since?
Stephen Theberge: Well, I always love retelling this story because it’s a great stubborn optimism story. In the beginning, when I was in college, I had some vision, so I was kind of in denial about my… So for the first year in computers, I was doing pretty badly. I was one class away from — I had to pass a statistics course, and if I didn’t, I was out. And I was on my second go round, and my advisor — I don’t know if he did it deliberately or just didn’t think — he said, you know, I think you should find another major.
Donna J. Jodhan, LLB, ACSP, MBA: Oh no.
Stephen Theberge: And I was like, you know, like English or something. So I went through the college stuff and I was like, hey, I can get an English degree and not take all these electives. So I’m going to double major. And so now I thank him for that, pushing me. I really think at the time he was trying to help me and say, go think about doing something else. But I said, I’m going to finish this computer science degree. And the writing stuff really, to me, made a connection between, you know, being a tech person and talking tech, and being able to communicate without having that technical talk that people aren’t going to understand. And just reading, like writing, it helped me with wanting to be a writer, you know, taking English classes and learning different kinds of styles of writing. So, some people — it really is actually not as strange a mix as it would seem. You know, you would think on the surface. They actually complement each other, I think.
Donna J. Jodhan, LLB, ACSP, MBA: So you’re not sorry that you…
Stephen Theberge: Oh no, I probably wouldn’t change anything. Yeah. But what really drove me was the anger of saying, you know, how you want me to change majors. And it was not really a conscious thing at the time. I said, well, okay, I’ll just do two majors, because it was like, you know, I can take all these electives. That would have been great. But I said, hey — so I don’t know, it just happened to fall into place. And no, I have no regrets.
Donna J. Jodhan, LLB, ACSP, MBA: Why is your advisor surprised or was he?
Stephen Theberge: I don’t know if my advisor even ever knew. I don’t know if they left later, or — because I didn’t really talk to him later on in the… I did, because I was pretty much doing all right. You know, I think in the beginning they’re more… I don’t know if he was there when I graduated, but I would have liked to say, yeah, I took your advice. I got two degrees, but…
Donna J. Jodhan, LLB, ACSP, MBA: That’s okay too.
Stephen Theberge: Yeah. Thanks for the advice. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, goodness. Now, here is something I would love you to unpack for our listeners. Okay. You were studying computer science in the early to mid 1980s, long before those screen readers and the mainstream accessibility we know today. How on earth did you actually do the coursework, and what did access look like for a blind college student back then?
Stephen Theberge: Well, I did have a friend who went to another school, and the text to speech was just starting. He was totally blind. He would not have made it without text to speech. Now, I was fortunate at that time to have some vision. I used a closed circuit television — or they used to call it a VisualTek. Yes, especially with the English, there was a lot of reading and learning how to type. So it was like I didn’t always have to see what was on the screen. Of course it was a struggle, but it was definitely a struggle. And I know some people would notice, like I had my face an inch away from the screen. I don’t know, I guess I was very determined. But no, they didn’t really have — I was there even really before the internet. I mean, it wasn’t — PCs were just starting. And so it was totally like on the edge of — just everything was starting. And that was exciting to me, because the timing was awesome, because I could see things were hitting, you know, the PC came out. And yeah, we didn’t talk about accessibility at all in those days, but they did have some rudimentary text to speech. And I know in the beginning they had a whole bunch of different options. And, you know, finally certain companies made it, like, you know, JAWS and of course the Apple computers. But back then it was like the Wild West, you know. But when I was in school, the personal computers weren’t a common thing. I had a Texas Instrument computer in my house, and it was like one of the first ones. You know, it had nothing. It had 32K RAM and, you know, it looked like a breadbox. And you put this big card in there for expansion — memory expansion. And it was one-sided, 90K floppy disk.
Donna J. Jodhan, LLB, ACSP, MBA: Right.
Stephen Theberge: It was totally — but I guess, to me it was exciting. So I really loved being in that field at the time.
Donna J. Jodhan, LLB, ACSP, MBA: And I guess we’ve come such a long way, right, from that.
Stephen Theberge: Unreal. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: It’s unreal. Like, I mean, if you talk to today’s generation about what you just described, they wouldn’t know what we talked.
Stephen Theberge: Yeah. I remember I’d bring the punch cards to the dispatcher.
Donna J. Jodhan, LLB, ACSP, MBA: And.
Stephen Theberge: Yeah. And then I would go and have coffee and come back and pick up my readout. It was like totally different. And then finally they got terminals in the college. So you didn’t have to do the punch cards anymore. But we never got to see the computer in the basement. It was like a magical Wizard of Oz thing. It’s like, don’t — you can’t see that.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. It reminds me of the very first Kurzweil machine. I don’t know if you’re familiar. That was so big.
Stephen Theberge: Yeah, it had all these keys on it, and it was unreal. Yeah. Those were exciting times. Growing up, it was like — it just everything opened up, and it was an exciting time for me to be in computers.
Donna J. Jodhan, LLB, ACSP, MBA: Wow. Now, from the late 1980s through to the beginning of the new millennium, you started and ran your own business building software for blind and visually impaired people. Tell us about that venture in your own words, and what did you build and what were you trying to solve?
Stephen Theberge: Well, at the time I was concerned about the cost, you know, because everything was expensive. Yeah. And I did come up with an alternative. And I actually was able to test it when I did have surgery in 94. I had no vision. And I said, oh, this really works, you know, because I could see a little. And the hardest part was really getting the word out. Like I said, there were companies and text to speech, you know, different devices out there — there were a whole bunch of them. I had a whole catalog of all kinds of… And that’s when it was like the Wild West, like I said earlier. So at the time, it was really exciting. And so by the time the early 2000 hit, computers changed. The big companies and standards are good, I think — I think we need, like, things settled down, and the big companies kind of took over. So it really wasn’t possible for me as an individual to keep developing a screen reader. But I had a good run at it. I mean, it was exciting to get to talk to people overseas and, you know, emails and online. The world was so different than it was, you know?
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, yeah, yeah. How many years did you stay in that area?
Stephen Theberge: Probably a good five. Five to 10. Really? Yeah. I think in the 2000 came. Even the software changed where I couldn’t really do it visually anymore because it was all GUI and there wasn’t access tools.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: Yeah. I commend anyone that’s doing software development today, which I’m not really doing anymore. But it wasn’t really possible for me to do it anymore because it was, you know, so visual and there was just no way I could keep up. And again, the big companies — you know, JAWS was really exploding. Which is good. I mean, you know, a lot of people criticize it, but we do need standards. And so now we have NVDA, JAWS and VoiceOver pretty much of the basics for most people.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is a good history lesson for anyone listening who is of the younger generation, you know, because they have no clue where we all started and where we are today. They just think, well, you know, it just happened magically.
Stephen Theberge: But — and computers are slow. Dial up.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I mean, dial up.
Stephen Theberge: I remember Napster — you’d be like eight hours to download an album, and now today it takes like 10 seconds to up… you know, two or three minutes to update my phone, and it’s like, we’re impatient. We get so spoiled.
Donna J. Jodhan, LLB, ACSP, MBA: And we didn’t have YouTube in those days. No MP3s and all the players. My God, I could go on and on, but let’s keep going here. Something you have said about those years really stayed with me. And this is that the promise of access and the actual affordability of access were two entirely different things. Our community still lives with that gap today. What did you see back then and how much of it has really changed?
Stephen Theberge: Well, back then it was like, you know, open. It was open, you know, free for all — the development was out. Like I said, I couldn’t name the synthesizers that were out there. Yeah, yeah. I remember I used the Covox Speech Thing, I think it was called. It was a speaker, and that’s what I used for my screen reader. But there was so many options for, you know, like text to speech. I know people criticize… But really the iPhone really is — it’s expensive, but it is a computer. And if you get enough training on it, it really is access for all. And you’re not paying extra like you do, you know, you buy a PC and then you go buy JAWS. I do like the fact that JAWS has the subscription. I know a lot of people complain about that, but that really helped me, because I know that Voc Rehab wasn’t going to pay for it the rest of my life, which I don’t need them to anymore. And, you know, a hundred a year, it’s a lot, but it’s not like $600 at once. I mean, so I think, you know, there’s a lot of criticisms to go around. And, you know, you read all the time online about — some people are very negative, and there’s fair criticism. You know, you could probably have a whole show just on that. But yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, people tend to criticize more than look at, you know, the glass being half full as opposed to half empty. And I try to tell them, you know, come on, folks, grow up, you know.
Stephen Theberge: Well, if they remember what it used to be like, it was like no access almost, you know?
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah. And then, you know, like we’ve come from — did you know Braille in those days?
Stephen Theberge: No, that was an interesting — now, I remember I had asked to learn Braille, and I guess one of the teachers said, oh, you won’t have to worry about that, your prognosis is… Now, I think if I had one, you know, I just didn’t question as much back then. If I had told my parents, they might have advocated for me to get Braille. So I learned it later in life and I wish I had learned it. But then again, I don’t know, maybe I wouldn’t have really been that interested in it. You know, because the mind, you know, you go to your vision, it’s just a natural thing. And so it might not have… You know, it’s easy to look back and say, I should have taken — I think it would have been nice if I had the opportunity, but I’m getting along pretty well with the Braille now.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I think a lot of people misjudge Braille, but I know for me, I really, you know, embrace it. I really appreciate it.
Stephen Theberge: Well, they always say we have technology, and it’s like, bingo, you can use a Braille display and it’s expanded. It’s not dying. It’s like it’s not Braille books anymore. And you know, you can do things in any language. And it’s really — I think it opens the world. And another reason I like, you know, talking about the glass half full or half empty — it’s like if I ever did lose my hearing, Braille would be the only way I could communicate with the outside world.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I never thought of that. But you’re right. Very true. What became of that software in the end? I ask because I think our community, you know, loses its own technological history very quickly. Tools that mattered, you know, enormously to the people who use them simply stop running one day, and then nobody writes it down.
Stephen Theberge: Yeah. It basically became obsolete because, of course, they had DOS back in the day. So that…
Donna J. Jodhan, LLB, ACSP, MBA: Oh, yeah.
Stephen Theberge: I actually knew somebody about ten years ago that was still using DOS. And of course, all they can do is email. And I said, if your computer ever does break down, you’re going to have no choice. You’re going to have to go to Windows. But yeah, it just became obsolete because, like I said, I couldn’t keep up with developing it. And then software — the tools, software tools started getting more expensive. So it was financially getting out of reach where I could keep up. And it was like everything started being done by teams, and there was just no way I could keep up with that.
Donna J. Jodhan, LLB, ACSP, MBA: So basically, you were forced to really change course, right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: Okay. Among the materials that you share publicly, you have kept a television appearance from WJAR Channel 10, right, dated February 28th, 1992. Right. That is 34 years ago. What was that moment like? And what does it mean to you that you have held on to it all this time?
Stephen Theberge: Well, at the time it was my first appearance on TV showing a screen reader. And I just thought, you know, this could be the beginning of something big. It wasn’t. I mean, it’s kind of forgotten and it’s just a nostalgic… But it was just the excitement of the times. It was like, wow, we actually got noticed, because, you know, I was sending press releases and it was like the only station that said, oh, well, we’ll send someone over and interview you. So it was like — because I did it all myself, you know, sending this stuff out — and, you know, that anyone even answered me, it was amazing. Because that was the only station that said, you know — nobody else. And so it was exciting. I thought maybe this could be the beginning of something really big. So I was a big dreamer. And, you know, I don’t have any regrets, but I thought, man, this is going to be great.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. But sometimes, you know, if you believe you can achieve. Right?
Stephen Theberge: Yeah. Oh, yeah.
Donna J. Jodhan, LLB, ACSP, MBA: And this is what, you know, I’m presently working on to teach to kids preparing to leave high school and young adults, if you believe you can achieve. But you’ve got to have the dream first of all. Right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: You know, sounds like you were a big dreamer. Sorry. Go ahead.
Stephen Theberge: It’s a matter of saying, you know, and it does sound corny. If at first you don’t succeed, try, try again. But it’s so true. There’s that stubborn optimism again. Yeah. Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: No. You’re right, you’re right. In 2014, you went to the Carroll Center for the Blind for vision rehabilitation, to learn to, you know, compensate for vision that was getting worse and to get current with assistive technology. What made you decide that it was time to go?
Stephen Theberge: Well, I couldn’t live in denial anymore about my vision loss. And the doctors knew that — they didn’t have a date, that I was losing my vision. There was nothing they could do about it. And when I got to the assessment at the Carroll Center, it was a two-week assessment. And, you know, they said, okay, how do you do email? And, you know, I have my face literally almost on the screen.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And they say, you gotta learn JAWS. And I’ll tell you, from taking an hour to read emails to have it done in five minutes with JAWS, I said, yeah, I’m in. You know, and then other techniques, daily techniques, blindness, non-visual skills — I never thought about it. You know, they didn’t really talk about that at Perkins, but Perkins wasn’t really — it was more academic learning. You know, people learn Braille. They… I had large print, but I didn’t really… They didn’t talk about losing vision or vision loss at Perkins. We lived with it. You know, there were blind people. But it wasn’t a conscious thing. And I think a lot of the low vision, it’s like the denial. But when you start bumping into things — I ran into a branch and it knocked my glasses off, and I had… it was like it was a week away. I said, yeah, I think it’s time to go.
Donna J. Jodhan, LLB, ACSP, MBA: So you felt a bit of pain before you said time to go. Right? Yeah. And that’s always the case with most people. They don’t want to admit that they can’t see or they’re losing it. I guess maybe it’s pride. Maybe it’s not concern but fear. Right.
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: So it’s a bit of everything. And then 2019, you lost the remainder of your vision and you returned to the Carroll Center for what you have described as a refresher in honing your, you know, non-visual skills. And Stephen, you were already experienced, capable blind man by then. What is it like to go back and be a student again at that stage of your life? And what would you say to someone who is frightened of exactly that transition right now?
Stephen Theberge: Well, I would say I was fortunate. Like when I did lose my vision, I said, I’m going to need some momentum. You know, I’m kind of rusty. I was using my cane since 2014. But I remember I went home that day — I came home, I was traveling, and it took me an hour to get home when it normally should take 25 minutes. I mean, I did it. So I said, okay, I’m going to get some one-on-one O and M, you know. But then they were like, maybe you should go back to the Carroll Center. And I said, no, I don’t want to take out time from work and all that. The work — they were great. When my work was at the MBTA, they were like, yeah, you take your time, you know, we’ll still be here. So the fear — I think the first time there was a lot going on in my life, I was grieving. I was a nervous wreck. I did learn a lot, but the second time I was like, oh, I got this. And it was just so smooth. And I said, I wish I had had that the first time. And people say, well, you’re so courageous, but I think sometimes you just have to surrender — whatever you define as surrender — and say, I’m not in control. So, and I lost my vision at the end of August in 2019. And then of course I had to stop going in because COVID hit. So I was doing a lot of remote, which was…
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: So, but to me, COVID was like, yeah, it’s too bad we can’t go out. But it was like, you know, people always like to think they’re in control. So I was like, well, I wasn’t in control before COVID. So to me, COVID wasn’t a big deal. It’s like, well, I’m still going to learn skills. I can do it from home. And I would have never learned Braille. I had more time at home, one on one, which I would have never got in person at the center, you know, because it would have been 12 weeks. Time’s up. So they really stretched it out. So I was more like — the second time I said, yeah, I really want to learn Braille grade two. And it’s that motivation, and it’s not giving up in the fear. Yeah, it’s hard to say don’t be afraid, but you kind of have to find that mindset where you’re just going to push through it. It’s not that you’re not afraid, but you just say, well, I’m going to do my best, and stop beating yourself up. Like, that was another thing — I was always trying too hard to be perfect. And there was a teacher there, she was actually teaching special ed, and she was losing her vision, and she was like, you know, [unclear 00:33:33] just slow down and enjoy — enjoy it, what you’re doing here. And it’s like, I never forgot it. It’s like, slow down. Yeah, take your time. There’s no rush. It’s no race. Do your best. And because I was like — the assessment, I was like, I just want to get through this. You know, it’s like you’re going to be here the same amount of time. You may as well enjoy it as much as you can enjoy something like that.
Donna J. Jodhan, LLB, ACSP, MBA: I think it has to do a lot with maturity, confidence in who you are and to know that you want to do it. I mean, a lot of people are definitely afraid, especially when they’re losing their vision, right?
Stephen Theberge: Yeah.
Donna J. Jodhan, LLB, ACSP, MBA: But, you know, I think this is a great story. You know, now you work with JAWS on Windows and with VoiceOver on iOS. You have used an assistive technology across more decades than almost anyone listening to this now. When you sit down at a computer today, what feels genuinely miraculous compared to where you started and what still frustrates you?
Stephen Theberge: I think the biggest thing — if I hadn’t gone to the Carroll Center and learned JAWS, I would have never written my first book. I was starting to write my first book, but it wasn’t going to happen either. I’d have to have someone read it to me. So JAWS gave me that liberation. And yeah, what’s frustrating sometimes is when things don’t work the way they’re supposed to, or it’s not speaking, or…
Donna J. Jodhan, LLB, ACSP, MBA: Right, right.
Stephen Theberge: Websites, of course. So there are a lot of frustrating things. I could probably make a big list, but it’s just like things don’t work the way they’re supposed to and you have to… That’s one thing I’m glad — you know, a lot of people, it’s like, they don’t have that troubleshooting background that I had. So I’m not going to give up. But I understand where people are frustrated, because it’s like, it shouldn’t be that difficult. And it’s a lot better than it used to be. But there’s still a lot of things that have to be worked on.
Donna J. Jodhan, LLB, ACSP, MBA: And then you have, you know, like adaptive technology, not keeping up with the changes, and then it breaks and they say, oh God, where do I get the training? Who is going to help me out? And you still have a lot of people who are afraid of our technology, right? Yeah. But it’s not as bad as, say, maybe two or three years ago. I mean, I have a technician who’s really not afraid. He takes the bull by the horns. But you still have people who say this thing talks. I don’t know what to do. Right.
Stephen Theberge: Yeah. It’s different. It’s a different tolerance. I mean, I know somebody, they self-taught themselves. They never went to a training center. They [unclear 00:36:27] all their life. They got JAWS and just pretty much went through the menus. And, you know, you can do it that way. It’s going to take time and persistence. But, you know, some people say, well, I get confused in the menus, and it’s like, I get it. But, you know, everyone has a different set of, you know, what they’re going to tolerate. But I mean, she taught herself French Braille and we do French stuff together. It’s really cool.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I heard about French Braille.
Stephen Theberge: Yeah. They — I guess the old days, that… Oh, that’s a whole other issue with the UEB. And you get all kinds of opinions on that. And it’s like, well…
Donna J. Jodhan, LLB, ACSP, MBA: [unclear 00:37:10] my Braille, and yeah.
Stephen Theberge: [unclear 00:37:13] has always been changing. It’s not like it just changed overnight. It’s a big change, I get it. And that was what I was grateful for in vision rehab — is learning the old and the new, which I didn’t think you’d be in the old contracted. Yeah, there’s differences, but they were like, you should really learn both, because the old Braille isn’t going away. There’s going to be a lot of old stuff around.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And to me, I cannot… I mean, writing it might be different. I probably should do more writing, but I can pretty much read UEB and the other older Braille without much difficulty. I like the old Braille, I do. A lot of people say… I like the old. I like the [unclear 00:37:50] and, you know, and into the and things like that. That’s kind of neat, which they don’t do when you leave.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is really — I think would be really great for our listeners to know a lot about, you know, like you’ve come a long way history wise, to me. Yeah. No. Folks, starting to wind down. But here’s a question for you. Let’s talk about transit, because this is where your advocacy became a job. You have worked as an ADA compliance tester for the Massachusetts Bay Transportation Authority. Tell our listeners what that work actually involves, and bring us up to date on where things stand for you with the MBTA today.
Stephen Theberge: Well, basically what they do is they pair a disabled person with an observer who usually — they have perfect sight. They do a lot of documentation with things I couldn’t read, like the bus number, and it’s all documented, the route. They give you a route and you… I used to say I was an undercover, but I wasn’t really a cop. But it was basically saying, are they doing the stop announcements? There’s a whole checklist of things. And sometimes they say, ask them to deploy the ramp.
Donna J. Jodhan, LLB, ACSP, MBA: Okay.
Stephen Theberge: And things like — which I don’t usually use — but it’s testing all the systems. And you have to know, like, if the stop announcements aren’t working, what are they supposed to do? They’re supposed to announce the major connections, and there’s a whole checklist. And then if there are violations, it’s more educating, you know. I mean, if someone chronically has issues with that, they will fire them. But they want to educate, because it all came about from Boston Center for Independent Living. There was a class action lawsuit.
Donna J. Jodhan, LLB, ACSP, MBA: Okay.
Stephen Theberge: And they’re still committed to it. I think pretty much the lawsuit is resolved. And they didn’t really do it for financial. They just said, we want this to be accessible. And there’s a whole video on how it started and the history of it. So I was part of that, you know, running the system. And what we would do at the end, especially if there were violations, is like, is this a flagrant violation? And we had to be on the same page. So it was like, you know, I had to write my own words. I could say, oh, I agree with [Scott? 00:40:31], you know what he says — I know, you got to write up what happened. So we had to have a consensus. And I learned a valuable lesson. One day I made a bad assumption. There was a bus driver and I could tell he had an accent. And I asked him, you know, do you stop at so and so? And apparently — the observer said later, oh, he nodded. So it’s kind of — there’s a lot of gray. There’s a lot of gray in that job. Because I said it must be a language barrier. And he said, no, he understood you. He nodded. I said, obviously that’s not going to help you, you can’t see. But so these things are not always black and white. And he said, well, we’ll write it down, what happened, but we’re not going to call it a violation. It’s like, it’s very, very gray, because you don’t want to sit there and say, these are all the rules. And, you know, there are things that are more important than others. I can’t remember specifics. You know, some things are more serious than others. Like, missing your stop is probably more important than whether he nodded or not. And so I think the bus driver did say, you know what, that we were at that stop. So it’s all these things to put together and things to remember.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And no two — you know, it’s not a boring job, because it’s very rare you have two days that are the same. It’s all, you know, the routes. You start, you kind of learn, because there are certain problem areas that you’re going to do over again, you know, maybe. But it’s like it’s never the same. You know, just when you think you’ve seen and heard it all, something comes up that you never thought about. So it was exciting. I’m not doing it anymore, but I think I stopped in ’22. But yeah, I enjoyed it. And that was the best. You know, I know we were talking about Perkins and they were talking about open house. They used to have the kids, you know, sit around, and they’d bring people in, and it was like an exhibit. And someone said last night, every day is an open house for us blind. You know, we have to perform every day. So it was really interesting. I met a lot of nice people, a lot of interesting people. And yeah, you meet some people that aren’t so nice, but I thought it was great just getting out and with good exercise, you know, because I’d be walking a lot.
Donna J. Jodhan, LLB, ACSP, MBA: I can hear in your voice that you really, really enjoyed it.
Stephen Theberge: The passion. Because I think, you know, we have so many transportation issues. I don’t know how… I know you were talking about Canada, and I’d be interested to compare notes on that. Like, what’s the transportation and accessibility on websites? And yeah, so to me, you know, that’s one of the main things of independence. And yeah, it’s nice to get a ride, but it’s nice to say I’m going to go to… And that’s another reason — you were saying, you know, I can go anywhere. I can go to Boston. It’s only an hour away. It’s a little time commuting. But then I can come home and it’s nice and quiet, you know? That’s why I like living here.
Donna J. Jodhan, LLB, ACSP, MBA: I love your attitude. And I think, you know, we’re to the end of your interview, but I would invite you to come back, you know, one day, not too long in the future to talk more about this. I’ve truly enjoyed, you know, your descriptions of Perkins and the Carroll Center and, you know, everything that you’ve done. I think it’s great. And I know that our listeners would truly appreciate and enjoy this interview. So I want to thank you for having taken the time to be with us today. And please, if ever you wanted to come back and talk about, you know, your authorship, what you’ve written, what are you doing? But tell me in just a short minute or so, what do you think the future is for our kids?
Stephen Theberge: It depends what’s going on that day in the news. I think, you know, I always hear about people talk about the youth of today, and I don’t know, I haven’t run across… you know, I’ve run across a lot of nice people. You know, they say they don’t have any respect. And, you know, I know some adults that could work on that, and they’re older than I.
Donna J. Jodhan, LLB, ACSP, MBA: Yes, yes, yes.
Stephen Theberge: I’m kind of scared for the future. I think, you know, there are a lot of things — I don’t know if I’d want to be a kid growing up today, because the world is just so overwhelmed with…
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: You know, it’s like we didn’t have that. We had the news once a day and we didn’t have 24/7. And the social media, it has its advantages, but it’s like just too much. I mean, you really — we need… My dad invented it before social media. Like, let’s have some electronic peace. You turn off the TV and say, you know, just sit here. And it’s like, yeah, you can hear the birds. Or we can still do that, but it’s harder because we’re so distracted. And for what? I don’t know. So I’m hopeful for the kids of today. But then again, I think if people have… you know, I understand there’s a lot of things to be afraid of and to worry about. But I mean, we got through the Cold War, and, you know, we thought the world was coming to an end when we were growing up.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
Stephen Theberge: And here we are.
Donna J. Jodhan, LLB, ACSP, MBA: It was a pleasure, Stephen. I really, really enjoyed it. And like I said, if ever you wanted to come back, please get in touch with me and let me know. Okay.
Stephen Theberge: That’d be great. I’d love to talk about my books. I guess that’s the only thing we haven’t talked about. Really?
Donna J. Jodhan, LLB, ACSP, MBA: No, we haven’t, and I’d like to talk about it. So maybe sometime early in the new year, I’ll contact you and you could come back and talk about it.
Stephen Theberge: Sounds good. I can tie it all together for you.
Donna J. Jodhan, LLB, ACSP, MBA: I’ve really enjoyed this interview because this is one of the first interviews where someone is able to talk about the, what I call the good old days, you know.
Stephen Theberge: Good old days.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, the good old days. And I yearn for that sometimes. I say, I wish I could sit on a beach with my book and leave me alone.
Stephen Theberge: Yeah, absolutely. Yeah. I like the old days. We’d be waiting for the next week, and it’s like, last week, as you recall. And it’s like, I missed that. Now it’s like we watch seven episodes of a show.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah.
Stephen Theberge: There’s no — there’s no drama anymore. It’s like it’s no anticipation.
Donna J. Jodhan, LLB, ACSP, MBA: No. So thank you very, very much. And we’ll be in touch with you early in the new year to see if we could arrange another interview with you. How’s that?
Stephen Theberge: Sounds good. Sounds great. Thanks, Donna.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you, Steve. And you take care.
Stephen Theberge: All right. You too.
Donna J. Jodhan, LLB, ACSP, MBA: All right. Bye bye now.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at donnajodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.
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