Latest / Podcasts By Donna Jodhan / Remarkable World Commentary Episode #105: Interview with Stephen Theberge, Science-Fiction Author and Accessibility Tester
Transcript
- 0:12Podcast Commentator: Greetings, Donna J. Jordan LBAP and MBA invites you to listen to her biweekly
- 0:21podcast, Remarkable World Commentary.
- 0:24Here, Donna shares some of her innermost thoughts,
- 0:27insights, perspectives, and more with her listeners.
- 0:31Donna focuses on topics that directly affect the future of kids,
- 0:35especially kids with disabilities.
- 0:38Donna is a blind advocate, author, sight loss coach,
- 0:42dinner mystery producer, writer, entrepreneur,
- 0:45law graduate, and podcast commentator.
- 0:49She has decades of lived experiences, knowledge,
- 0:53skills, and expertise in access, technology and information.
- 0:58As someone who has been internationally recognized for her work and roles,
- 1:02she just wants to make things better than possible.
- 1:07Donna J. Jodhan, LLB, ACSP, MBA: Hello everyone, and welcome to another episode of The Remarkable World Commentary.
- 1:14I'm Donna J. Jordan. I am a lifelong disability advocate and one who sees the
- 1:21world mainly through sound, touch and stubborn optimism.
- 1:27I am a law graduate. I am an accessibility consultant,
- 1:33an author, a blogger, and a lifelong barrier buster who also
- 1:39happens to be blind. You may know me from a few headline moments,
- 1:45as in November of 2010, I won the landmark charter case that forced
- 1:52the Canadian government to make its websites accessible to every Canadian not just to
- 1:59sight at once. And in July of 2019, I co-led the Accessible Canada Act with more
- 2:07than two dozen disability groups to turn equal access into federal law and most
- 2:15recently, on June the 3rd, 2022, I was greatly humbled by Her Majesty's
- 2:22Platinum Jubilee Award for tireless commitment to removing barriers.
- 2:30When I'm not in a courtroom or in a committee room or in a pottery studio,
- 2:37you'll find me coaching kids with vision loss,
- 2:41producing audio mysteries, or helping tech companies to make their
- 2:46gadgets talk back in plain language.
- 2:51I guess I am a very busy person in many ways and Everything I do circles one
- 3:01goal, that being to turn accessibility from an afterthought into everyday practice.
- 3:09I invite you to think of this show as our shared workbench,
- 3:14where policy meets lived experience and lived experience sparks fresh ideas.
- 3:21Now, before we jump into today's conversation,
- 3:25let me shine a spotlight on today's guest, a change maker whose work is every bit as
- 3:33remarkable as the world that we are trying to build.
- 3:39Now, I am pleased to introduce to you Steve, and I hope I have your last name spelled
- 3:47pronounced correctly. Steve Birch.
- 3:50Welcome to the remarkable world of commentary.
- 3:53I am most privileged and happy to have you.
- 3:57You have a change back.
- 3:59You are a change maker whose work is every bit as remarkable as a world that we are
- 4:04trying to change. So welcome to our podcast.
- 4:10Stephen Theberge: Thanks for having me. I love their stubborn optimism.
- 4:15I can relate to that.
- 4:17Donna J. Jodhan, LLB, ACSP, MBA: I try my best.
- 4:20Stephen Theberge: All we can do.
- 4:21Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So Steve, Stephen, let's welcome you.
- 4:26And let's start at the very beginning.
- 4:30You were born in Lewiston, Maine in 1963 and your family moved to
- 4:40Attleboro. I hope I have this correctly.
- 4:43Yeah, Massachusetts. When you were still an infant,
- 4:47more than 60 years later, Attleboro is still home.
- 4:53What has kept you rooted in that one place for a lifetime.
- 5:01Stephen Theberge: Well, I think because it's of course I have family here and it's not a big city.
- 5:07It's a suburb. And I, I went to school in Providence,
- 5:10Rhode Island when I went to college. So it was very close.
- 5:13And I can take the train to Boston without having to live in Boston.
- 5:16And I just grew up here.
- 5:19And there's a lot of things that I like about a suburb,
- 5:22and it's just feels like home to me.
- 5:26Donna J. Jodhan, LLB, ACSP, MBA: I visited Boston many years ago and I really,
- 5:29really liked it. So I think it's great when when one could stay in one place
- 5:33for so long. Hey.
- 5:35Stephen Theberge: I got lucky. Yeah. I mean, yeah, because moving is never fun,
- 5:39you know? No.
- 5:41Donna J. Jodhan, LLB, ACSP, MBA: No it isn't. Now, you began at the Perkins School for the Blind in Watertown in
- 5:501968 as a Residential student at roughly five years old.
- 5:58And then you stayed until you graduated in 1982.
- 6:04That is 14 years of your childhood.
- 6:09Take our listeners inside that experience.
- 6:13And what did Perkins give you that you still carry with you today?
- 6:20Stephen Theberge: Well, I remember the first night, of course,
- 6:23I I'm sure my parents explained it, but I thought they needed me there.
- 6:28And but I made friends pretty quickly.
- 6:30I still spoke French and I knew enough English to get by.
- 6:35I guess Perkins gave me a lot of critical thinking.
- 6:38That stubborn optimism.
- 6:40I don't know if they like the stubborn as much,
- 6:42but they taught me to persist and to, you know,
- 6:46think for myself and and to not give up on things.
- 6:50And also we learned a lot about different cultures.
- 6:54We had teacher trainees from various cultures and they didn't tolerate any any like racial
- 7:01slurs or anything. So we learned early, even beyond disability,
- 7:05that we had international days.
- 7:07So we'd learn about other cultures. And it just was a natural part of growing up.
- 7:12And it was, you know, once I got over the first hump of being away
- 7:17from home, it just felt like my home.
- 7:19You know, it was I made a lot of friends.
- 7:21I have some friends I still have from that.
- 7:25Donna J. Jodhan, LLB, ACSP, MBA: That sounds really interesting though.
- 7:27I mean, and it sounds like a really nice
- 7:28experience for you, right?
- 7:31Stephen Theberge: Yeah. It was, I mean, I, I wouldn't trade it in because at the time
- 7:36it was really for me. I mean, I, I'm not going to get into that debate,
- 7:40but it was the best education because they weren't ready in the public schools where I
- 7:45was to take to do blind stuff at the time.
- 7:51Donna J. Jodhan, LLB, ACSP, MBA: You know, that's very true. Like in the 60s and 70s,
- 7:55many schools were not ready.
- 7:56Right?
- 7:57Stephen Theberge: Yeah.
- 7:58Donna J. Jodhan, LLB, ACSP, MBA: So, you know, these schools gave us good foundations.
- 8:01And I like to I like to hear stories like that.
- 8:04You know, I want to stay with those Perkins years for a moment,
- 8:12because I think many of our listeners have no idea what residential school life is like or
- 8:20actually like. You were a little boy away from your parents and your siblings for much
- 8:28of the year. How did your family stay close to you across that distance?
- 8:36And what were those homecomings like?
- 8:41Stephen Theberge: Yeah, that was an advantage to living closer.
- 8:43I could go home every weekend.
- 8:45There were students that couldn't go home because they were too far away, so they had
- 8:48to. So the homecomings were nice when I was a little boy.
- 8:51Of course, my mother would make me a chocolate cake on Saturdays.
- 8:54But yeah, as I got older and I've talked to my siblings about this we kind of like the
- 9:03summers, you know, they had their own friends. So I was kind of alienated.
- 9:07I mean, they did their best at the but, you know,
- 9:09they didn't, but I wasn't included in as many things.
- 9:12And I think part of that too.
- 9:14And at the time, there wasn't as much like inclusion or talk about,
- 9:19you know, awareness. So you know, I don't blame anyone for that,
- 9:24but it can be, it could be lonely going home sometimes because yeah,
- 9:28you know, I'm like gone nine months out of the year and they have their friends and I
- 9:32had a few friends in the neighborhood, you know,
- 9:35in the summer, but it was hard to really make friends in that neighborhood.
- 9:38You know, my friends were really at school because I saw them most of the year.
- 9:44Donna J. Jodhan, LLB, ACSP, MBA: I guess, you know, it was sort of like a not,
- 9:46not, not exactly a double life, but like two different
- 9:50lives in many ways. Right?
- 9:51Stephen Theberge: Yeah.
- 9:52Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Oh, gosh. In 1987, he graduated from Rhode Island.
- 10:00Island College with not just one, but two bachelor's degrees,
- 10:07one in computer science and one in English literature.
- 10:12Wow. With a focus on creative, technical, and analytical analytical writing.
- 10:20Those are two very different ways of using the mind.
- 10:25Why did you refuse to choose between them and how both.
- 10:33How have both halves served you since.
- 10:39Stephen Theberge: Well, I always love retelling this story because it's a great stubborn optimism story.
- 10:44I was in the beginning when I was in college,
- 10:47I wasn't really. I had some vision, so I was kind of in denial about my.
- 10:53So for the first year in computers, I was doing pretty badly,
- 10:56I. I was one class away from.
- 11:00I had to pass a statistics course and if I didn't,
- 11:04I was out and I, I had to, I was on my second go round and my advisor,
- 11:09I don't know if he did it deliberately or just didn't think.
- 11:13He said, you know, I don't. I think you should find another major.
- 11:17Donna J. Jodhan, LLB, ACSP, MBA: Oh no.
- 11:18Stephen Theberge: And I was like, you know, like English or something.
- 11:21So I went, I went through the college stuff and I was like,
- 11:25hey, I can, I can get a, an English degree and not take all these
- 11:30electives. So I'm going to double major.
- 11:32And so now I thank him for that pushing me.
- 11:35I really think at the time he was like trying to help me and say,
- 11:39go think about doing something else.
- 11:41But I said, I'm going to finish this computer science degree and the writing stuff really
- 11:48to me made a connection between, you know, being a tech person and talking
- 11:54tech and, and being able to communicate, you know,
- 11:58without having that technical talk that people aren't going to understand.
- 12:02And, and just reading, like writing it, it, it helped me with being,
- 12:08wanting to be a writer, you know, taking English classes and learning
- 12:12different kinds of styles of writing.
- 12:15So I, it, some people, it, it really is actually not as strange a
- 12:20mix as it would seem. You know, you would think on the surface they actually
- 12:23complement each other, I think.
- 12:26Donna J. Jodhan, LLB, ACSP, MBA: So you're not sorry that you.
- 12:28Stephen Theberge: Oh no, I probably wouldn't change anything.
- 12:31Yeah. And and that but what really drove me was the anger of saying,
- 12:35you know, how you want me to change majors.
- 12:38And I it was not really a conscious thing at the time.
- 12:41I said, well, okay, I'll just do, I'll just do two majors because it was like,
- 12:47you know, I can take all these electives.
- 12:49That would have been great. But I said, hey, so I don't know how it just happened to
- 12:52fall fall into place. And no, I have no regrets.
- 12:57Donna J. Jodhan, LLB, ACSP, MBA: Why is your advisor surprised or was he?
- 13:00Stephen Theberge: I don't know if my advisor even ever knew.
- 13:03I don't know if they left later or because I didn't really talk to him later on in the.
- 13:07I did because I was pretty much doing all right. You know, I think in the beginning
- 13:10they're they're more. I don't know if he was there when I graduated,
- 13:14but I would have liked to say, yeah, I took your advice.
- 13:17I got two degrees, but.
- 13:19Donna J. Jodhan, LLB, ACSP, MBA: That's okay too.
- 13:20Stephen Theberge: Yeah. Thanks for the. Thanks for
- 13:22the advice. Yeah.
- 13:25Donna J. Jodhan, LLB, ACSP, MBA: Oh, goodness. Now, here is something I would love you to unpack for our listeners.
- 13:32Okay. You were studying computer science in the early to mid 1980s,
- 13:41long before those screen readers and the, you know,
- 13:46mainstream accessibility we know today.
- 13:51How on earth did you actually do the coursework and what did access look like for
- 13:59a blind college student back then?
- 14:03Stephen Theberge: Well, I did have a friend who went to another school and the text to speech was just start.
- 14:09He was totally blind. He would not have made it without text to speech.
- 14:12Now, I was fortunate at that time to have some vision.
- 14:16I used a closed circuit television or they used to call it a visual text.
- 14:20Yes, especially with the English.
- 14:21There was a lot of reading and learning how to type.
- 14:25So it was like I didn't always have to see what was on the screen.
- 14:29Of course it was. It was a struggle, but it was definitely a struggle.
- 14:33And I know some people would know it would notice.
- 14:35Like I had my face an inch away from the screen.
- 14:38I don't know, I guess I was very Determined.
- 14:42But no, they didn't really have.
- 14:44Even I was there even really before the internet.
- 14:48I mean, they they it wasn't they didn't even PCs were just starting.
- 14:53And so it was totally like on the edge of just everything was starting.
- 14:58And that was exciting to me because it was like the timing was awesome because I could
- 15:04see things were hitting, you know, the PC came out and yeah,
- 15:09we didn't talk about accessibility at all in those days,
- 15:12but they did have some, some rudimentary text to speech.
- 15:16And I know in the beginning they had a whole bunch of different options.
- 15:19And, you know, and finally the certain companies made it like,
- 15:22you know, jaws and of course, the Apple computers.
- 15:25But back then it was it was like the Wild West,
- 15:28you know, but when I was in school, we didn't even the personal computers weren't
- 15:33a common thing. I had a Texas instrument computer in my house,
- 15:37and it was like one of the first ones.
- 15:40You know, it had nothing.
- 15:41It had 32 K ram and you know, it looked like a breadbox.
- 15:45And you put this big card in there for expansion memory expansion.
- 15:48And it was one sided 90 K floppy disk.
- 15:52Donna J. Jodhan, LLB, ACSP, MBA: Right.
- 15:53Stephen Theberge: It was it was a totally but it was I guess that was just to me it was exciting.
- 15:58So I, I really loved being in that field at the time.
- 16:03Donna J. Jodhan, LLB, ACSP, MBA: And I guess we've come such a long way right from that.
- 16:06Stephen Theberge: Unreal. Yeah.
- 16:07Donna J. Jodhan, LLB, ACSP, MBA: It's unreal. Like, I mean, if you talk to today's generation about what
- 16:11you just described, they would they wouldn't know what we talked.
- 16:14Stephen Theberge: Yeah. I remember I'd, I'd run the, I'd bring the punch cards to
- 16:18the dispatcher.
- 16:19Donna J. Jodhan, LLB, ACSP, MBA: And.
- 16:19Stephen Theberge: Yeah. And then I would go and have coffee and come back and pick up my readout.
- 16:23It was like totally different.
- 16:25And then finally they got terminals in the college.
- 16:28So you didn't have to do the punch cards anymore.
- 16:30But we never got to see the computer in the basement.
- 16:34It was like a magical Wizard of Oz thing.
- 16:37It's like, don't don't you don't you can't see that.
- 16:40Donna J. Jodhan, LLB, ACSP, MBA: Yeah. It reminds me of the very first Kurzweil machine.
- 16:44I don't know if you're familiar. Oh, yes. That was so big.
- 16:47Stephen Theberge: Yeah, it had all these keys on it, and it was unreal.
- 16:51Yeah. Yeah. Those were exciting times.
- 16:53Growing up, it was like, really the it just everything opened up and
- 16:58it was an exciting time for me to be in computers.
- 17:02Donna J. Jodhan, LLB, ACSP, MBA: Wow. Now, from the late 1980s through to the beginning of the new
- 17:11millennium, you started and ran your own business building software for blind and
- 17:20visually impaired people.
- 17:22Tell us about that venture in your own words,
- 17:27and what did you build and what were you trying to solve?
- 17:32Stephen Theberge: Well, at the time I was concerned about the cost of,
- 17:37you know, because there was like everything was expensive.
- 17:40Yeah. And I, I did come up with an alternative.
- 17:44And I actually was able to test it when I did have surgery in 94.
- 17:48I had no vision. And I said, oh, this really works,
- 17:50you know, because I could see a little. And it was really the hardest part was really
- 17:56getting the word out. Like I said, there were, there were companies and text to
- 18:02speech, you know, different devices out there were a whole bunch of them.
- 18:07I had a whole, whole catalog of all kinds of.
- 18:10And that's when it was like the Wild West, like I said earlier.
- 18:13So at the time, it was really exciting.
- 18:15And so by the time the early 2000 hit computers changed.
- 18:23The big companies and standards are good, I think,
- 18:26I think we need like things settled down and the big companies kind of took over.
- 18:31So it really wasn't possible for me as an individual to keep developing a screen
- 18:36reader. But I had a good run at it.
- 18:40I mean, it was exciting to get to talk to people overseas and,
- 18:45you know, emails and online.
- 18:48The world was so different than it was, you know?
- 18:51Donna J. Jodhan, LLB, ACSP, MBA: Yeah, yeah, yeah. How many years did you stay in that area?
- 18:57Stephen Theberge: Probably a good five. 5 to 10.
- 19:00Really? Yeah. I think I think in the 2000 came.
- 19:04Even the software changed where I couldn't really do it visually anymore because it was
- 19:10all GUI and there wasn't access tools.
- 19:13Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 19:13Stephen Theberge: Yeah. I commend anyone that's doing software development today,
- 19:16which I'm not really doing anymore.
- 19:19But it wasn't really possible for me to do it anymore because it was,
- 19:24you know, so visual and there was just no way I could,
- 19:28I could keep up. And, and again, the big companies,
- 19:31you know, jaws was really exploding and.
- 19:34Which is good. I mean, you know, a lot of people criticize it,
- 19:37but we we do need standards.
- 19:39And so now we have Nvda, jaws and VoiceOver pretty much of the basics
- 19:45for most people.
- 19:48Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is a good history lesson for anyone listening who is of the younger generation,
- 19:53you know, because they have no clue where we all started and where we are today.
- 20:00They just think, well, you know, it just happened magically.
- 20:02Stephen Theberge: But and computers are slow dial up.
- 20:05Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I mean, dial up.
- 20:07Stephen Theberge: I remember Napster would you'd be like eight hours to download an album and now today,
- 20:12today it takes like 10s to up, you know, 2 or 3 minutes to update my phone
- 20:18and it's like, we're impatient.
- 20:20We get we get so spoiled.
- 20:23Donna J. Jodhan, LLB, ACSP, MBA: And we didn't have YouTube in those days.
- 20:25No MP3's and all the players.
- 20:30My God, I could go on and on, but let's keep going here.
- 20:34Something you have said about those years really stayed with me.
- 20:40And this is that the promise of access and the actual affordability of access were two
- 20:50entirely different things.
- 20:53Our community still lives with that gap today.
- 20:57What did you see back then and how much of it has really changed?
- 21:05Stephen Theberge: Well, back then it was like, you know, open.
- 21:08It was open, you know, free for all the development was out.
- 21:12Like I said, I, I couldn't name the synthesizers that were out there.
- 21:17Yeah, yeah. I remember I used the Covox speech thing,
- 21:20I think it was called it was a speaker.
- 21:22And that's what I used for my screen reader. But there was so many options for,
- 21:26you know, like text to speech.
- 21:29I, I know people criticize And.
- 21:33But really the iPhone really is that it's expensive,
- 21:37but it's like it is a computer.
- 21:38And if you get enough training on it, it really is access for all.
- 21:44And you're not paying extra like you do, you know,
- 21:46you buy a PC and then you go buy jaws.
- 21:49I do like the fact that jaws has the subscription.
- 21:52I know a lot of people complain about that, but that really helped me because I know that
- 21:57VOC rehab wasn't going to pay for it the rest of my life,
- 21:59which I don't need them to anymore.
- 22:01And, you know, a hundred a year, it's a lot,
- 22:03but it's not like $600 at once.
- 22:08I mean, so I think, you know, there's a lot of criticisms to go around.
- 22:13And, you know, I, you read all the time online about some people are very negative
- 22:18and there's fair criticism.
- 22:20You know, I, you could probably have a whole show just on that.
- 22:23But yeah.
- 22:25Donna J. Jodhan, LLB, ACSP, MBA: Yeah, people tend to criticize more than look at,
- 22:27you know, the glass being half full as opposed to half empty.
- 22:30And I, you know, I try to tell them, you know,
- 22:32come on, folks, grow up, you know.
- 22:35Stephen Theberge: Well, if they remember what it used to be like,
- 22:37it was like no access almost, you know?
- 22:40Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah. And then, you know, like we've come from did you know
- 22:45Braille in those days?
- 22:47Stephen Theberge: No, that that was an interesting now, I remember I had asked to learn Braille,
- 22:52and I guess one of the teachers said, oh, you won't have to worry about that. Your
- 22:56prognosis is now, I think if I had one, you know,
- 22:58I just didn't question as much back then if if I had told my parents,
- 23:02they might have advocated for me to get Braille.
- 23:04So I learned it later in life and I wish I had learned it.
- 23:09But then again, I don't know, maybe I wouldn't have really been that
- 23:14interested in it. You know, because the mind,
- 23:16you know, you go to your vision, it's just a natural thing.
- 23:20And so it might not have, you know, it's easy to look back and say,
- 23:23I should, I should have taken I, I think it would have been nice if I had the
- 23:27opportunity, but I'm getting along pretty well with the Braille now.
- 23:32Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I think a lot of people misjudge Braille,
- 23:35but I know for me, I, I really, you know, embrace it.
- 23:38I really appreciate it.
- 23:40Stephen Theberge: Well, they always say we have. Technology and it's like,
- 23:42bingo, you can use a Braille display and it's expanded.
- 23:48It's it's not dying. It's like it's not Braille books anymore.
- 23:52And you know, you can do things in any language.
- 23:57And it's really, I think it opens the world.
- 24:00And another reason I like to you know, talking about the glass half full or half
- 24:06empty, it's like if I ever did lose my hearing,
- 24:09Braille would be the only way I could communicate with the outside world.
- 24:13Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I never thought of that.
- 24:14But you're right. Very true.
- 24:18What became of that software in the end?
- 24:22I ask because I think of our community, you know,
- 24:28loses its own technological history.
- 24:31Very quickly, tools that mattered, you know,
- 24:37enormously to the people who use them.
- 24:40Simply stop running to one day and then nobody writes it down.
- 24:49Stephen Theberge: Yeah. It basically became obsolete because of course they had dos back
- 24:54in the day. So that.
- 24:55Donna J. Jodhan, LLB, ACSP, MBA: Oh, yeah.
- 24:57Stephen Theberge: I actually knew somebody about ten years ago that was still using DOS.
- 25:01And of course, all they can do is email.
- 25:03And I said, if your computer ever does break down,
- 25:06you're going to have no choice. You're going to have to go to windows. But yeah,
- 25:10it just became obsolete because like I said, I couldn't keep up with developing it.
- 25:15And you know, and then and then software, the tools,
- 25:20software tools started getting more expensive.
- 25:23So it was, it was financially getting out of reach where I could keep up.
- 25:26And it was like everything started being done by teams and there was just no way I could
- 25:32keep up with that.
- 25:35Donna J. Jodhan, LLB, ACSP, MBA: So basically, you were forced to really
- 25:37change course, right?
- 25:38Stephen Theberge: Yeah.
- 25:39Donna J. Jodhan, LLB, ACSP, MBA: Okay. Among the materials that you share publicly,
- 25:45you have kept a television appearance from WJAR channel ten,
- 25:54right, dated February 8th, 1998.
- 26:01Right. That is 34 years ago.
- 26:07What was that that moment like?
- 26:10And what does it mean to you that you have held on to it all this time?
- 26:18Stephen Theberge: Well, at the time it was my first appearance on TV showing a screen reader.
- 26:24And I just thought, you know, this could be the beginning of something big.
- 26:29It wasn't. I mean, it's kind of forgotten and it's just a nostalgic.
- 26:33But it was it was just the excitement of the times.
- 26:36It was like, wow, we actually got got noticed because,
- 26:40you know, I was sending press releases and it was,
- 26:43it was like the only station that said, oh, well,
- 26:46we'll send someone over and interview you. So it was like,
- 26:49because I did it all myself, you know, sending this stuff out and you know
- 26:54that anyone even answered me.
- 26:55It was amazing because like, there was that was the only station that
- 27:00said, you know, nobody else. And so it was, it was exciting.
- 27:03I thought maybe this could be the beginning of something really big.
- 27:08So I was a big dreamer.
- 27:10And, you know, I don't have any regrets, but I thought, man,
- 27:12this is going to be great.
- 27:14Donna J. Jodhan, LLB, ACSP, MBA: Yeah. But sometimes, you know, if you believe you can
- 27:17achieve. Right?
- 27:18Stephen Theberge: Yeah. Oh, yeah.
- 27:20Donna J. Jodhan, LLB, ACSP, MBA: And this is what, you know, I'm presently working on to teach to kids
- 27:24preparing to leave high school and young adults,
- 27:27if you believe you can achieve.
- 27:28But you've got to have the dream first of all. Right?
- 27:31Stephen Theberge: Yeah.
- 27:32Donna J. Jodhan, LLB, ACSP, MBA: You know, sounds like you you were a big
- 27:35dreamer. Sorry. Go ahead.
- 27:36Stephen Theberge: It's a matter of saying, you know, and it does sound corny.
- 27:40If at first you don't succeed, try, try again.
- 27:42But it's so true. There's that stubborn optimism again.
- 27:46Yeah. Yeah.
- 27:47Donna J. Jodhan, LLB, ACSP, MBA: No. You're right, you're right.
- 27:50In 2014, you went to the Carroll Center for the blind for Vision Rehabilitation,
- 28:00to learn to, you know, compensate for vision that was getting worse
- 28:06and to get current with assistive technology.
- 28:11What made you decide that it was time to go?
- 28:18Stephen Theberge: Well, I couldn't live in denial anymore about my vision loss.
- 28:21And the doctors knew that they didn't have a date,
- 28:27that I was losing my vision.
- 28:28There was no there was nothing they could do about it.
- 28:32And when I got to the assessment at the chiral center,
- 28:35it was a two week assessment.
- 28:37And, you know, they said, okay, what do you how do you do email?
- 28:40And, you know, I have my face literally almost on the screen.
- 28:44Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 28:45Stephen Theberge: And they say, you gotta learn jaws.
- 28:47And I'll tell you from taking an hour to read emails to have it done in five minutes with
- 28:53jaws, I said, yeah, I'm in.
- 28:55You know, and, and, and then other techniques,
- 28:57daily techniques, blindness, non-visual skills.
- 29:01I, I never thought about it.
- 29:03You know, they didn't really talk about that at Perkins,
- 29:05but Perkins wasn't really it was more academic learning.
- 29:09You know, people learn Braille. They. I had large print,
- 29:12but I didn't really. They didn't talk about losing vision or vision loss at Perkins.
- 29:17We we lived with it. You know, there were blind people.
- 29:20But it wasn't a conscious thing.
- 29:22And I think a lot of the low vision, it's like the denial.
- 29:27But when you start bumping into things, I ran into a branch and it knocked my glasses
- 29:31off and I had it was like it was a week away.
- 29:33I said, yeah, I think it's time to go.
- 29:37Donna J. Jodhan, LLB, ACSP, MBA: So you felt a bit of pain before you said time to go.
- 29:41Right? Yeah. And that's always the case with most people.
- 29:44They don't want to admit that they can't see or they're losing it.
- 29:47I guess maybe it's pride.
- 29:49Maybe it's, it's not concern but
- 29:52fear. Right.
- 29:54Stephen Theberge: Yeah.
- 29:54Donna J. Jodhan, LLB, ACSP, MBA: So it's a bit of everything.
- 29:58And then 2019, you lost the remainder of your vision and you returned to the Carroll Center
- 30:07for what you have described as a refresher in honing your,
- 30:14you know, non-visual skills.
- 30:19And Steven, you were already experienced, capable blind man by then.
- 30:26What is it like to go back and be a student again at that stage of your life?
- 30:34And what would you say to someone who is frightened of exactly that
- 30:41transition right now?
- 30:44Stephen Theberge: Well, I would say I was fortunate.
- 30:46Like when I did lose my vision, I was, you know,
- 30:48I had I said, I'm going to need some momentum.
- 30:51You know, I'm kind of rusty.
- 30:52You know, I was using my cane since 2014.
- 30:56But and I remember I went home that day.
- 30:59I came home, I was at traveling and it took me an hour to get home when it's normally
- 31:05should take 25 minutes.
- 31:07I mean, I did it. So I said, okay, I'm going to get some on one O and M,
- 31:11you know, but then they were like, maybe you should go back to the Carroll
- 31:16Center. And I was like, I said, no, I, I don't want to take,
- 31:21out time from work and all that.
- 31:23The work, they were great when my work was at the Mbta.
- 31:28They were like, yeah, you take take your time,
- 31:30you know, we'll still be here.
- 31:32So so the fear, I think the first time there was a lot going on in my life,
- 31:38I was grieving. I, I was a nervous wreck.
- 31:42I was, I was so I did learn a lot, but the second time I was like,
- 31:46oh, I got this. And it was just so smooth.
- 31:49And I said, I wish I had had that.
- 31:51So the first time and it's people say, well,
- 31:56you're so courageous, but I think it's just sometimes you just have
- 32:00to surrender whatever that whatever you define as surrender and say,
- 32:04I'm not in control. So and I, I lost my vision at the end of August in
- 32:102019. And then of course, I had to stop going in because Covid,
- 32:15Covid hit. So I was doing a lot of remote, which was.
- 32:17Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 32:18Stephen Theberge: So, but to me, Covid was like, yeah, it's too bad we can't go out.
- 32:22But it was like, you know, people always like to think they're in
- 32:25control. So I was like, well, I wasn't in control before Covid.
- 32:29So to me, Covid wasn't a big deal.
- 32:31It's like, well, I'm still going to learn skills.
- 32:34I can do it from home.
- 32:36And I would have never learned Braille.
- 32:38I had more time at home one on one, which I would have never got in person at the
- 32:42at the center, you know, because it would have been 12 weeks.
- 32:45Time's up. So they they really stretched it out.
- 32:49So I was more like the second time I said, yeah,
- 32:53I really want to learn Braille grade two.
- 32:56And I was, you know, it's, it's that motivation and it's not giving up
- 33:02in the fear. Yeah. It's, it's hard to say, don't be afraid,
- 33:06but you kind of have to find that mindset where you're just going to push through it.
- 33:11It's not that you're not afraid, but you just say, well,
- 33:14I'm going to do my best and, and stop beating yourself up.
- 33:17Like that was another thing. I was always trying too hard to be perfect,
- 33:22and there was a teacher there that she was actually teaching special ed,
- 33:30and she was losing her vision and she was like,
- 33:33you know, I didn't just slow down and enjoy, enjoy it with what you're doing here.
- 33:37And it's like, I never forgot it.
- 33:39It's like, slow down. Yeah, take your time.
- 33:41There's no rush. It's no race.
- 33:43Do your best. And because I was like the assessment,
- 33:47I was like, I just want to get through this. You know, it's like you're going to be here
- 33:51the same amount of time. You may as well enjoy it as much as you can enjoy
- 33:55something like that.
- 33:57Donna J. Jodhan, LLB, ACSP, MBA: I think it has to do a lot with maturity, confidence in who you are and to know that
- 34:03you want to do it. I mean, a lot of people are definitely afraid,
- 34:07especially when they're losing their vision, right?
- 34:09Stephen Theberge: Yeah.
- 34:10Donna J. Jodhan, LLB, ACSP, MBA: But, you know, I think this is a great story.
- 34:13You know, now you work with Jaws on windows and with voice over on
- 34:23iOS. You have used an assistive technology across more decades than almost anyone
- 34:33listening to this now.
- 34:35When you sit down at a computer today, what feels genuinely miraculous compared to
- 34:44where you started and what still frustrates you?
- 34:50Stephen Theberge: I think the biggest thing when I if I hadn't gone to the Carroll Center and learned jaws,
- 34:57I would have never written my first book.
- 34:59I was starting to write my first book, but it wasn't going to happen either.
- 35:02I'd have to have someone read it to me, or so jaws gave me that liberation.
- 35:07And yeah, what's frustrating sometimes is when things don't work the way they're
- 35:12supposed to, or it's not speaking or.
- 35:15Donna J. Jodhan, LLB, ACSP, MBA: Right, right.
- 35:17Stephen Theberge: Websites of course. So there are a lot of frustrating things.
- 35:23I could probably make a big list, but it's just like things don't work the way
- 35:28they're supposed to and you have to.
- 35:30That's one thing I'm glad I, you know, a lot of people,
- 35:33it's like, you know, they don't have that troubleshooting background that I had.
- 35:36So I'm not going to give up.
- 35:38But I understand where people are frustrated because it's like,
- 35:42it shouldn't be that difficult.
- 35:44And it's a lot better than it used to be.
- 35:46But there's still a lot of things that have to be worked on.
- 35:50Donna J. Jodhan, LLB, ACSP, MBA: And then you have, you know, like adaptive technology,
- 35:53not keeping up with the changes, and then it breaks and they say,
- 35:57oh God, where do I get the training?
- 36:00Who is going to help me out?
- 36:01And you still have a lot of people who are afraid of,
- 36:05of our technology, right?
- 36:07Yeah. But it's not as bad as, say, maybe 2 or 3 years ago.
- 36:11I mean, I have a technician who's really not afraid.
- 36:13He takes the bull by the horns.
- 36:14But you still have people who say this thing talks.
- 36:17I don't know what to do.
- 36:18Right.
- 36:19Stephen Theberge: Yeah. It's different. It's a different tolerance.
- 36:23I mean, I know somebody, they self-taught themselves.
- 36:27They never went to a training center. They find all their life they got jaws and just
- 36:32pretty much went through the menus.
- 36:34And, you know, you can do it that way.
- 36:36It's going to take time and persistence. But,
- 36:39you know, but, you know, some people say, well,
- 36:41I get confused in the menus and it's like, I get it.
- 36:44But it's, you know, everyone has a different,
- 36:47different set of, you know, what they can, what they're going to
- 36:50tolerate. But I mean, she taught herself French Braille and we do
- 36:54French stuff together.
- 36:55It's really cool.
- 36:57Donna J. Jodhan, LLB, ACSP, MBA: Yeah. I heard about French Braille.
- 37:01Stephen Theberge: Yeah. They, I guess the old days that, oh, that's a whole other issue with the USB.
- 37:05And you get all kinds of opinions on that.
- 37:08And it's like, well.
- 37:10Donna J. Jodhan, LLB, ACSP, MBA: I'm my Braille and yeah.
- 37:13Stephen Theberge: God has always been changing.
- 37:15It's not like it just changed overnight.
- 37:17It's a big change, I get it.
- 37:19When and that was what I was grateful for in vision.
- 37:22Rehab is learning the old and the new, which I didn't think you'd be in the old
- 37:27contracted. Yeah, there's differences, but they were like,
- 37:30you should really learn both because the old Braille isn't going away.
- 37:34There's going to be a lot of old stuff around.
- 37:36Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 37:37Stephen Theberge: And to me, I cannot. I mean, writing it might be different.
- 37:40I probably should do more writing, but I can pretty much read UEB and the other
- 37:45older Braille without much difficulty.
- 37:48I liked. I like the old Braille I do.
- 37:50A lot of people say I like the old. I like the snuggling and,
- 37:53you know, and into the and things like that.
- 37:56That's kind of neat, which they don't do when you leave.
- 38:01Donna J. Jodhan, LLB, ACSP, MBA: Boy, this is really, I think would be really great for our listeners to know a lot about,
- 38:06you know, like you've come a long way history wise to me.
- 38:10Yeah. No. Folks starting to wind down.
- 38:15But here's a question for you.
- 38:16Let's talk about transit, because this is where your advocacy became a
- 38:23job. You have worked as an A D a compliance tester for the Massachusetts Bay
- 38:33Transportation Authority.
- 38:37Tell our listeners what that work actually involves and bring us up to date on where
- 38:46things stand for you with the MBTA today.
- 38:53Stephen Theberge: Well, basically what they do is they pair a disabled person with with an observer who
- 39:00usually they have perfect sight.
- 39:02They do a lot of documentation with things I couldn't read, like the bus number,
- 39:05and it's all documented the route they give you a route and you.
- 39:10I used to say I was an undercover, but I wasn't really a cop.
- 39:14But it was basically saying, do do we.
- 39:17Are they doing the stop and nonsense?
- 39:19There's a whole checklist of things.
- 39:20And sometimes they say, ask them to deploy the ramp.
- 39:23Donna J. Jodhan, LLB, ACSP, MBA: Okay.
- 39:24Stephen Theberge: And things like, which I don't usually use, but it's testing all the systems.
- 39:28And you have to know, like if the, if the stop announcements aren't
- 39:32working, what are they? What are they supposed to do?
- 39:34They're supposed to announce the major connections and there's a whole checklist.
- 39:39And then if there are violations, it's more educating,
- 39:43you know, that. I mean, if someone's chronically has issues with with
- 39:47with that, they will fire them.
- 39:50But they want to educate because it all came about from Boston Center for Independent
- 39:55Living. There was a class action lawsuit.
- 39:58Donna J. Jodhan, LLB, ACSP, MBA: Okay.
- 39:59Stephen Theberge: And, and they're still committed to it. I think pretty much the lawsuit is resolved.
- 40:03And they didn't really do it for financial.
- 40:06They just said, we want this to be accessible.
- 40:08And there's, there's a there's a whole video on how it started in the history of it.
- 40:12So I was part of that, you know, running the system and,
- 40:15and, you know, and what we would do at the end is especially if there were violations,
- 40:21is like, is this a, a flagrant violation?
- 40:25And you, we had to be on the same page.
- 40:28So it was like, you know, I had to write my own words.
- 40:31I could say, oh, I agree with Scott. You know what he says? I know you got to write up what
- 40:34happened. So you we had to have a consensus like,
- 40:38and I learned a valuable lesson.
- 40:39One day I made a bad assumption.
- 40:42There was a bus driver and he, he could I could tell he had an accent.
- 40:47He was. And I asked him, you know, do you stop at so and so?
- 40:52And apparently my. The observer said later, oh.
- 40:55He nodded. So it's like it's kind of a there's a lot of gray.
- 40:59There's a lot of gray in that job, so I.
- 41:01Because I said it must be a language barrier.
- 41:03And he said, no, he understood you.
- 41:05He nodded. I said it. Obviously that's not going to help you.
- 41:09You can't see. But so these things are not always black and white.
- 41:13And he said, well, I'll we'll write it down what happened?
- 41:17But we're not going to call it a violation.
- 41:19It's like, it's very, very gray because you don't want to sit there
- 41:25and say, these are all the rules.
- 41:26And, you know, there are things that are, you know,
- 41:30important, more important than others.
- 41:32I can't remember specifics.
- 41:33You know, some things are more serious than others.
- 41:36Like like missing your stop is probably more important than whether he nodded or not.
- 41:41And so I think, I think the bus driver did say,
- 41:45you know what, that we were at that stop.
- 41:48So it's all these things to put together and things to remember.
- 41:53Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 41:55Stephen Theberge: And and no. Two, you know, you can, you know,
- 41:58it's not a boring job because it's very rare.
- 42:01You have two days that are the same. It's all,
- 42:03you know, the routes you start, you kind of learn because there are certain
- 42:06problems, areas that you're going to do over again.
- 42:09You know, maybe, but it's like it's never the same.
- 42:13You know, just when you think you've seen and heard it all,
- 42:18something comes up that you never thought about.
- 42:20So it was exciting. I'm not doing it anymore,
- 42:24but I think I stopped in 22.
- 42:26But yeah, it was, I enjoyed it because and, and that was the best.
- 42:32You know, I know we were talking about Perkins and they were talking about open
- 42:36house. They used to have the kids, you know,
- 42:39sit around and they'd bring people in and, and they were like,
- 42:42it was like an exhibit.
- 42:44And someone said last night, every day is an open house for us blind.
- 42:48You know, we have to perform every day.
- 42:50So it was really interesting.
- 42:51I met a lot of nice people, a lot of interesting people.
- 42:54And yeah, you meet some people that aren't so nice,
- 42:57but I thought it was great just getting out and with good exercise,
- 43:01you know, because I'd be, you know, walking a lot.
- 43:05Donna J. Jodhan, LLB, ACSP, MBA: I can hear in your voice that you really, really enjoyed it.
- 43:09Stephen Theberge: The passion. Because I think, you know, we have such so many transportation
- 43:15issues. I don't know how.
- 43:17I know you were talking about Canada, and I'd be interested to compare notes on
- 43:22that. Like what's the transportation and accessibility on websites?
- 43:26And yeah, so it's to me, it's, you know, that's one of the main things
- 43:32of independence. And yeah, it's nice to get a ride,
- 43:36but it's nice to say I'm going to go to.
- 43:38And that's another reason you were saying, you know, I can go anywhere.
- 43:42I can go to Boston. It's only an hour away.
- 43:45It's a little time commuting.
- 43:47But and then I can come home and it's nice and quiet,
- 43:50you know? That's why I like living here.
- 43:54Donna J. Jodhan, LLB, ACSP, MBA: I love your attitude. And I think, you know,
- 43:56we're to the end of your interview, but I would invite you to come back,
- 44:02you know, one day, not too long in the future to talk more about this.
- 44:06I've truly enjoyed, you know your descriptions of Perkins and the Carroll
- 44:11Center and, you know, everything that you've done,
- 44:15I think it's great. And I know that our listeners would truly appreciate and enjoy
- 44:20this interview. So I want to thank you for having taken the time to be with us today.
- 44:26And please, if ever you wanted to come back and talk about,
- 44:30you know, your authorship, what you've written,
- 44:33what are you doing? But tell me in, in, in just a short minute or so,
- 44:40what do you think the future is for our kids?
- 44:44Stephen Theberge: It depends what's going on that day in the news,
- 44:47I think, you know, I always hear about people talk about the youth of today and I don't
- 44:54know, I haven't, I haven't run across you know,
- 44:59I've run across a lot of nice people, you know,
- 45:01they say they don't have any respect. And, you know,
- 45:04I know some adults that could work on that and they're older than I.
- 45:07Donna J. Jodhan, LLB, ACSP, MBA: Yes, yes, yes.
- 45:08Stephen Theberge: I, I, I'm kind of scared for the future.
- 45:10I think you know, there are a lot of things I wouldn't,
- 45:13I don't know if I'd want to be a kid growing up today because the world is just so
- 45:18overwhelmed with.
- 45:20Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 45:21Stephen Theberge: You know, it's like we didn't have that. We we had the news once a day and we didn't have
- 45:2724 over seven. And the social media it has its advantages,
- 45:32but it's like just too much.
- 45:35I mean, you really we need.
- 45:36My dad was invented it before social media.
- 45:40Like let's have some electronic piece.
- 45:42You turn off the TV and say, you know, just sit here and it's like,
- 45:45yeah, you can hear the birds or you can, we can still do that,
- 45:48but it's harder because we're so distracted and I don't.
- 45:52And for what? I don't know.
- 45:54So I'm, I'm hopeful for the kids of today.
- 45:57But but then again, it, it, I think if people have,
- 46:03you know, I understand there's a lot of things to be afraid of and to worry about.
- 46:07But I mean, we got through the Cold War and the,
- 46:11you know, we thought the world was coming to an end when we were growing up.
- 46:13Donna J. Jodhan, LLB, ACSP, MBA: Yeah.
- 46:14Stephen Theberge: And here we are.
- 46:17Donna J. Jodhan, LLB, ACSP, MBA: It was a pleasure, Stephen.
- 46:19I really, really enjoyed it.
- 46:20And like I said, if ever you wanted to come back,
- 46:23please get in touch with me and
- 46:25let me know. Okay.
- 46:26Stephen Theberge: That'd be great. I'd love to talk about my books.
- 46:29I guess that's the only thing we haven't talked about. Really?
- 46:32Donna J. Jodhan, LLB, ACSP, MBA: No, we haven't, and I'd like to talk about it.
- 46:34So maybe sometime early in the new year, I'll contact you and you could come
- 46:39back and talk about it.
- 46:40Stephen Theberge: Sounds good. I can tie it all together for you.
- 46:43Donna J. Jodhan, LLB, ACSP, MBA: I've really enjoyed this interview because this is one of the first interviews where
- 46:47someone is able to talk about the, what I call the good
- 46:51old days, you know.
- 46:52Stephen Theberge: Good old days.
- 46:53Donna J. Jodhan, LLB, ACSP, MBA: Yeah, the good old days.
- 46:55And I yearn for that. Sometimes.
- 46:57I say, I wish I could sit on a beach with my book and leave me alone.
- 47:01Stephen Theberge: Yeah, absolutely. Yeah.
- 47:04I like the old days. We'd be waiting for the next week,
- 47:07and it's like last week, as you recall.
- 47:09And it's like, I'm, I missed that now it's like we,
- 47:12we watch seven episodes of a show.
- 47:15Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Yeah.
- 47:17Stephen Theberge: There's no, there's. No drama anymore.
- 47:20It's like it's no anticipation.
- 47:22Donna J. Jodhan, LLB, ACSP, MBA: No. So thank you very, very much.
- 47:25And we'll be in touch with you early in the new year to see if we could arrange another
- 47:30interview with you. How's that?
- 47:32Stephen Theberge: Sounds good. Sounds great.
- 47:33Thanks, Donna.
- 47:34Donna J. Jodhan, LLB, ACSP, MBA: Thank you. Steve. And you take care.
- 47:36Stephen Theberge: All right. You too.
- 47:37Donna J. Jodhan, LLB, ACSP, MBA: All right. Bye bye. Now.
- 47:43Podcast Commentator: Donna wants to hear from you and invites you to write to her at donna@gmail.com.
- 47:49Until next time.