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In this eye-opening episode of Remarkable World Commentary, Donna J. Jodhan welcomes Chris Schiafone, who recently joined the revived board of Barrier-Free Canada as a director, to walk listeners through what he calls a journey through lived experience: growing up with low vision and extreme light sensitivity, learning to type at three or four and to read braille while he could still see, and losing the rest of his usable sight after high school. Chris explains how remembering what things look like lets him picture the spokes of a wheel or the shape of a pear, why students born blind need a deeper explanation and something to explore by touch, and how one neuroscience professor had his class build a neuron out of candy so that he could learn it by touch, alongside other low-cost materials such as string, clay, pipe cleaners and stencils.
Chris and Donna also talk about the 2019 forum in Halifax where Chris and his brother Brandon told faculty from across the country that nothing is impossible when professors and blind students are willing to work with each other. Chris, now a master’s student in psychology, describes his work in the Centre for Vision Research and the Virtual Reality and Perception Laboratory on learning through the sense of touch, a tactile drawing board from the American Printing House for the Blind and a recent online deafblind conference, while Donna compares his stencils with the cookie cutters she uses in her pottery and asks him to find out whether that professor would come on the show and to help out with Barrier-Free Canada.
TRANSCRIPT
Podcast Commentator: [upbeat music] 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, a lifelong disability advocate, and one who sees the world mainly through sound, touch, and stubborn optimism. I am a law graduate, an accessibility consultant, author, 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 Late 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.
Donna J. Jodhan, LLB, ACSP, MBA: Everything I do circles one goal, and that is 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. And before we jump into today’s conversation, let me shine a quick spotlight on today’s guest, a change maker whose work is as every bit as remarkable as the world that we are trying to build. I am very pleased and privileged to welcome Chris. And I hope I’m getting your last name pronounced correctly. Schiafone?
Chris Schiafone: Schiafone.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, Schiafone. Okay. Sorry about that. Welcome, Chris. We’ve known each other for a few years, and I am delighted to share with our listeners that you have recently joined the revived board of Barrier-Free Canada as a director. So welcome, and let’s going. All right. Chris, welcome to the Remarkable World Commentary.
Chris Schiafone: Thank you so much for having me.
Donna J. Jodhan, LLB, ACSP, MBA: You’re very welcome. You once said that if you wrote a book about your life, you would call it, quote, A Journey Through Lived Experience, unquote. The story of someone who starts out with low vision and ends up totally blind. For listeners meeting you for the first time, would you walk us through that journey, sharing as much as you are comfortable with?
Chris Schiafone: Sure. No problem. So from a very young age, I did have low vision, due to a condition that I have. I had extreme light sensitivity, so I wore dark glasses all the time. Got a lot of comments about, “Hey, cool shades, man,” and all that sort of thing without people knowing exactly what the issue was. That’s okay. As a kid, you kind of look at them like, “Sorry, dude, if you actually understood this.” [laughs] But no, nonetheless, I grew up being able to read large print, doing mathematics using extremely large textbooks. So I would go back and forth between large print and closed-circuit television for reading. Because we never knew the future of my eye condition and what was going to happen, my parents began to teach me how to type at around the age of three or four years old. As you could imagine, a kid at that age does not want to sit at a keyboard going A-S-D-F-G-H-J-K, A-A-A. And I hated it. But what I can say about that is as time went on, I learnt, of course, how to write using bold markers. That’s what I had to use because regular pens did not work for me. I also needed bold-lined paper because the regular lined paper that everyone else uses, the lines were too light and they were hard for me to see. So I had to use that. In high school I used a combination again of large print and closed-circuit television with regular textbook, but in a lot of case, regular textbook. I always preferred to have my reading material with inverted colors, so white letters on a black background. I found that reduced the glare both on the computer and on the closed-circuit television, and I was more comfortable doing things that way. Now we’ll transition from vision to no vision. Shortly after I finished high school, I started having some issues that we didn’t really know about. There was a couple of times where I woke up and was fine when I laid down, but then woke up and couldn’t see for a bit. And the first time it happened, I remember being extremely nervous because I thought, “Oh, no. That’s it. My vision’s gone.” That happened not to be the case. And so over time my vision changed to the point where it is right now, which is light perception vision. I don’t have anything usable anymore. I can’t use the closed-circuit television or anything like that. But I will tell you, the skills that I learnt as a child, how to type. I learnt braille before I lost my vision, both grade one and grade two braille. I know it’s changed now to UEB braille, so what I learnt back then may not be totally relevant, but things have changed. But nonetheless, there wasn’t a ton of transition when I actually lost the remainder of my vision. I think it was more frustration because it was things that I could do before that were so much easier, like glance down on a sheet of paper, as opposed to having to go figure it out on the computer or having to go ask somebody for help with something. I think that was a frustration more than me having to actually adapt to, okay, I didn’t know braille. I can only imagine if I didn’t know braille, I didn’t know how to type, and I didn’t have all those kinds of skills to bring with me, we’ll say, into the transition from partial vision to total vision loss.
Donna J. Jodhan, LLB, ACSP, MBA: I can understand what you’re telling me because I was born with little to none, got a whole whack when I was a teenager through a cornea transplant. I learnt to read and write and do all kinds of things, and then I lost it about 15 to 20 years ago, through a retinal detachment. So I still believe in my braille. Braille saved me when I finally lost most of my vision. A lot of people, I don’t know, they still don’t think that there’s a place for braille, but I do. I do. So I understand what you’re telling our listeners.
Chris Schiafone: Yeah. And I think a lot of it is to do with technological advancements and people’s backgrounds. If they’ve never learnt braille before, they never enjoyed to learn braille, or maybe they were even forced to learn braille, there’s a whole host now of different technologies. For example, audiobooks, Audible, electronic books and different kinds of systems. And unfortunately, I hate to say it, but a lot of the platforms are very different. So what you might find on Audible you wouldn’t find, let’s say, on something like Bookshelf or VitalSource, which is a professional kind of platform where you can go buy textbooks and things like that. So not everything is the same across the board, but where the technology has gone, I’ve seen many people say, the technology is there and maybe they perhaps don’t feel that they need braille. But looking back at it now, all the frustrations, all the I didn’t wanna do it, all why are you making me learn this? I’m very grateful to my parents for having me do this.
Donna J. Jodhan, LLB, ACSP, MBA: All right. So you have said that you feel very fortunate to remember what things look like, so that if someone describes the spokes of a wheel or the shape of a pear, you can picture it. How do those visual memories help you learn today, and what do you think that students who were born blind need that may be different?
Chris Schiafone: That is a very, very loaded question, but a very interesting one.
Donna J. Jodhan, LLB, ACSP, MBA: Sorry. [laughs]
Chris Schiafone: It’s okay. No problem actually. So in my opinion, when you have grown up to even have some vision and you are shown different items… You referred to the spokes of the wheel or the shape of a pear. That is one of many, many, many things that we could use as examples. These are kinds of things that we would pick up visually, we can pick up tactfully. We get to know them over time as we grow up because we see what they look like. Oftentimes those who have a lot of vision may not, or have full vision may not, appreciate or understand or pay attention to certain things, like for example, the shape of what a pear might be or an apple or a tree branch or something like that. But for those who have vision loss, those are very important details. And so now that I’ve lost my vision, I find that a lot of those types of things come by way of visualization. So because I could see it before, I could sort of draw a picture in my mind of what it would look like if you said to me, “I have a bicycle wheel in my hand.” Now, again, spokes of a wheel come in different shapes and sizes and all that sort of thing. But generally speaking, I have the concept because I have been able to see them and I’ve been able to trace them tactfully. For someone who is born without sight, I feel like there has to be a much deeper experience of explanation and a tactile experience for them to actually be able to learn what something means. If I say to you, for example, “This is a C-shaped structure.” And when I say C here, I’m referring to the letter C. If you’ve never seen what the letter C is shaped like, or you’ve never been able to haptically explore through touch the letter C as a stencil or as anything else, what would me saying to you a C-shaped structure actually mean? Where would that leave you?
Donna J. Jodhan, LLB, ACSP, MBA: I think for someone who was born with no vision, it means nothing. For me personally, I had vision before I lost it now. So, like you, whenever you say anything, I can picture it in my mind. But I know that my music teacher once said to me, he said, he called me DJ. He said, “DJ, I don’t even know what the sun looks like.”
Chris Schiafone: And see, that’s a very good example right there of someone who’s never… And I mean, we’re not gonna take him to touch the sun. That one there, that one—
Donna J. Jodhan, LLB, ACSP, MBA: We can’t do that. [laughs]
Chris Schiafone: That one there would rely on very heavily described information. And if somebody could somehow make a tactile version of what the sun looks like and allow him to explore it, then perhaps he can build a bit of a visualization of what the sun is like or what is represented by the sun. And that’s the difference between having some vision, even if you don’t have full vision, and having no vision. That you can have adaptations if you have even limited vision. I’ll give you another example quickly. At the baseball game, I used to go to baseball games when I was young. And even though I couldn’t see what was happening, we could take binoculars, and I could look through the binoculars and watch what was going on on the field. I also could listen auditorily to hear when the bat hit the ball. So right there you have two examples of things that I was able to do as a sighted person. But actually the binoculars as a sighted person I could do. The sound of the hitting of the ball was something that I could hear. So I actually didn’t need to see that. It would be helpful to see where it went when they hit the ball. But nonetheless, you can tell that the bat made contact with the ball.
Donna J. Jodhan, LLB, ACSP, MBA: That reminds me of when I used to go to hockey games in Montreal, and I could see the players going up and down the ice. I could see them skating. I could see the puck. I could see the stick through binoculars, right? So now, whenever I, up for a game, I can visualize it. So I am—not empathize, but I understand where you’re coming from. Yeah.
Chris Schiafone: And I’m sure at the hockey game, the sound of the sticks are a good cue to you as to where the players are collecting for the puck. So there’s many auditory cues that I’ll say can… I’m not gonna say can fully replace the visual part of it, but there’s certain things that we learn over time, going from sight to no sight or going from description to sound, if we never had vision. That we can learn the relationships of these things.
Donna J. Jodhan, LLB, ACSP, MBA: I think we have a lot in common. I see where you’re coming from. All right. You have pointed out that a scientific textbook averages about 11 images for every 1,000 words. Tell us, what was it like to study psychology, statistics, and neuroscience as a totally blind student, and which barriers surprised you the most?
Chris Schiafone: Oh, you hit a very interesting topic here.
Donna J. Jodhan, LLB, ACSP, MBA: Another one, eh? [laughs]
Chris Schiafone: [laughs] It’s okay. It keeps the whole thing interesting, so I’m someone who likes to learn, and I will sometimes pick stuff that’s a little more challenging because I like to think that we cannot be told that we can’t do something until we at least try. It is easy for you to say, “Oh, I can’t do that because of whichever reason,” because the textbook is full of diagrammatic properties. Or it’s easy for someone to say to us, “Oh, I don’t think you can do that because it’s very challenging. There’s a lot of visual images.” But the reality of that is I haven’t tried yet. I know it’s easy to make assumption based on not having vision. But there are so many things out there today that could assist with such things if people are willing and able to work with us. And we are willing to work with them. So some of the barriers that I faced in these courses were, for example, data collection information that were then translated into what they call data visualization, where there’s charts, graphs, and diagrams that outlined results from research papers. Or that resulted from stuff that the professor had done, and they were using them as a learning tool. Oftentimes for that I had sighted help to assist me with that, so that’s kinda how I got through that portion of it. Unfortunately, in some cases, we have wonderful technology out there for people with vision loss, very helpful stuff, makes us independent. Sometimes, though, we need to still ask for assistance, and we shouldn’t be afraid to ask for assistance. It’s just the reality of it. It doesn’t mean that we can’t do it. It just means that we need to find another way to do it. And part of that has to be our own thought process, our own ideas, or… And sometimes it has to be a collective effort on the part of yourself and your faculty or your boss or whoever it is you’re trying to work this problem out with. Is there anything more specific that you wanna know about that?
Donna J. Jodhan, LLB, ACSP, MBA: No, I’m just very intrigued because I think what you’re saying, to me, makes sense. It’s a team effort between you and those helping you, or me and those helping me. And you find workarounds to things. It may not be perfect, but it’s enough to get you going, right?
Chris Schiafone: Yep. And the other thing is too is looking at what kind of tools are available in your toolbox for you to be able to use. You mentioned about neuroscience. One of the things that I have here that I use is a 3D brain model. And it’s in multiple parts. And I could take it apart and feel different components of the brain or different structures of the brain. And actually, the example I gave you earlier about a C-shaped structure, that was a realistic example from a neuroscience textbook. It was describing the corpus callosum, which is the area that goes between the left and the right hemispheres. Basically, that’s how your brain is connected. And so when they described it in the textbook, they said a C-shaped structure. And when I thought about this, I’m thinking, so as someone who’s been sighted before and lost his vision later in life, I totally know what you mean. I can take this model, open it up, find the C-shaped structure, and say, “Oh, there it is.” For someone who’s never had sight, that’s a problem. So this is kind of where my work on this all started. And where it kinda came down to that number of 11.1 images or every thousand words or so was actually part of my undergraduate thesis work. And that’s when I really started taking a look at this and saying, “Okay, how can we represent this information to people that are totally blind that choose to learn it?” Because they should be able to. Just like anybody else, they wanna learn different things, and just because it’s challenging doesn’t mean that they shouldn’t learn or can’t learn or should be told that they should go do something else because this is too complicated.
Donna J. Jodhan, LLB, ACSP, MBA: It’s a very interesting opinion, and I do agree. I mean, no reason why they shouldn’t learn. They just have to use a different approach, right? Okay. I understand that one of your neuroscience professors had your class build a model of a neuron out of candy so that you could learn it by touch. Why do simple, low-cost ideas like that matter so much? And what are other everyday materials have you seen turn a picture into something that a blind student can truly understand?
Chris Schiafone: So the story about the neuron, the candy neuron pictures is kind of interesting. I had a very, I’ll say wonderful neuroscience professor in undergrad. She did everything she possibly could to make sure I was included in the class and that things were as adapted to me as possible. As part of this, she was trying to teach us the structure, like the anatomical structure of the neuron. And knowing that I couldn’t see it, and us not having three-dimensional models available at the moment that I could observe, she decided to turn that into a class activity where we took craft supplies basically and candy, just like little candies like that you’d buy at the bulk food store or whatever the case. And the task was to come up with a raised line graphic made from candy that represented a neuron that I could feel as she had the information up on the board for the sighted students. So we were all doing this as a team, and it was all a learning process, but basically what she did was she had the information, her slides and stuff up on the board, and she gave us a practical activity that I could do that really was, I guess, so that I can learn. But as I’m learning as I go through my research and we talk about people learning differently, she probably helped more than just me in that class. So it was a very fruitful activity to undertake. It was a lot of fun, ’cause we were trying to sit here with Nerds candies and trying to figure out how to make neurons and different things like that. So it was quite interesting. As far as other low-cost items like you’re talking about, that’s a good question, because a lot of anatomical models can be very expensive, especially depending on the level of detail. I did one session, during the pandemic actually, where people just found things around their house, whether it be string, whether it be, oh, I don’t recall. Paper, construction paper, whatever it is, stuff that they had around the house. And there was instructions sent out to them, and we got together on Zoom in a group and we had them basically make this model out of household items. Unfortunately again, that was during the pandemic. But one thing that the person who was heading the workshop did, and she was at the time a person training for her master’s in inclusive design. She had each person describe to me what they used and how they made their neuron based on the picture that they were given, because I wouldn’t be able to see it on the screen, right? Again. So she got them thinking about a couple of things there. Number one, how could we use low-cost home like things, regular things that we have at home to take and, maybe even stuff that would’ve been thrown in the garbage, and use them for assistance in learning. In this case it was the neuron, but it could have been many other things also that they could have done with it. Other things are things that you can maybe buy from, I would say like a Michaels art supply store or something. So if you can get some clay, some pipe cleaners, some wooden dowel type of things. Depending on what it is you’re trying to make, those are lower cost items that as long as you have a good idea of what it is that you’re trying to put together, you could potentially do that and use it as a tactile means for someone who has vision loss. Especially if it’s something that is a timely project. In other words, the lecture’s in three days and you need to get something. I mean, the models are by far the best, because they’re as realistic as possible. But again, the models are very high cost. There is time with manufacturing them. Sometimes the models come from Germany. There’s a company in Germany that makes anatomical models. They’re very good. But that means then that they have to manufacture it and they have to send it to Canada, to the company that’s here, and then you purchase them, and then it goes from there. So, in a nutshell, that’s kind of how this process has worked in my experience. Other people might have other ideas, but this has been my experience.
Donna J. Jodhan, LLB, ACSP, MBA: As a potter, and I’ve been doing pottery for quite a few years now, I use cookie cutters as part of my models. I also use dishes, bowls, and salad plates and everything to make my own pottery. So I think there’s similarities here that I think I understand. Yeah.
Chris Schiafone: Well, one of the things that I’m gonna be exploring with soon here is I bought a tactile drawing board.
Donna J. Jodhan, LLB, ACSP, MBA: Ah. Is that the BrailleDoodle?
Chris Schiafone: No. Well, what this is is it’s a device that you buy through… The only place I’ve seen it is the American Printing House for the Blind. And it is essentially a board that has a felt kind of piece in the middle of it. And it comes with a special paper, and you clip the paper into the board so that it stays put. And it comes with a stylus that looks exactly like a pen. And you can draw on this, and then what happens is when you draw on it, it comes up as a raised line graphic. So then what I did was I went out and purchased a number of—actually from Amazon, they have a kit with shape stencils. All different shapes, all different sizes. And I’m gonna explore doing 2D shapes and 3D shapes. 2D shapes using the drawing kit and 3D, possibly with a 3D printer or some other device to do that. So that’s another way of doing it that I’m looking to explore.
Donna J. Jodhan, LLB, ACSP, MBA: So in essence you have a drawing kit from the American Printing House for the Blind. And then you went on Amazon and you bought yourself a kit of stencils. Very interesting. No, I mean it. Because see, what I do, I go on Amazon and I purchase cookie cutters in the shapes of what I want. Right now I am developing a Canadiana line of things. Like, you have dishes with maple leaves, you have dishes with, or pieces with different Canadiana things like a beaver, a snow goose. Things like that. So this is very interesting. Very interesting.
Chris Schiafone: And see, the cookie cutters, when you look at a cookie cutter versus a stencil, they probably would interact together differently haptically while you’re doing these tasks because the stencils are just sort of plastic with the shapes of different sizes cutting out of them. There’s not much in between the top of the stencil and the paper line. Whereas with a cookie cutter, a lot of times they’re a little bit thicker. They’re a little bit higher off. So you sort of have a different kind of… You have the edge on the paper. But it’s also higher off the paper at the top, and the manipulation of whatever tool, whether it’s a paintbrush or the stylus or whatever that you’re trying, the manipulation of that tool is gonna be different because of the tool that you’re using to trace the shapes.
Donna J. Jodhan, LLB, ACSP, MBA: And I work with clay, so then it’s a different medium that I’m working in.
Chris Schiafone: One day I will have you teach me. [laughs]
Donna J. Jodhan, LLB, ACSP, MBA: [laughs] Oh, you will have to teach me, too. [laughs]
Chris Schiafone: Well, there you go. We all learn together, right?
Donna J. Jodhan, LLB, ACSP, MBA: Oh, yes. Why not? All right. So you and your brother, Brandon, who is also blind, have presented together, including a 2019 forum in Halifax on understanding the needs of disabled students. What has it meant to share this path with a sibling, and what did you most want faculty from across the country to take away from that session?
Chris Schiafone: So I’ll start with the first part of the question. To present with a sibling was very interesting. He and I have lots of conversations about different kinds of topics, whether it be stuff to do with accessibility, whether it be stuff to do with education. We have very different interests, but we can have very similar discussions, if that makes sense. And it was great to be able to have the two of us work there, and that whole setup was thanks to my department head of psychology in my undergrad and his faculty where he was training at the time. It was my first presentation nationally. It was his first presentation nationally. My department head of psychology at the time was extremely supportive of my work. He totally understood what it was I wanted to do. He was into teaching me about how to write abstracts and do things. And, as I may talk about later, I’m at the point now where I’m not just writing those abstracts, I’m actually reviewing those abstracts. So, but back to 2019, that was our first shot. We drove across the country from Toronto to Nova Scotia.
Donna J. Jodhan, LLB, ACSP, MBA: Okay. Keep it up.
Chris Schiafone: Thanks to my father, by the way. He is the one that drove. I wouldn’t drive. I don’t think that’d be a good idea if I drove. What do you think?
Donna J. Jodhan, LLB, ACSP, MBA: I don’t think so, no. I would be off the street. If I knew you were coming down the street, I’d be gone.
Chris Schiafone: I’d love it, but I don’t think that’d be a good idea, so we—
Donna J. Jodhan, LLB, ACSP, MBA: No, not right now.
Chris Schiafone: We all packed up and off we went. And the day that we arrived, we were the first presentation the next morning. So we had to make sure that we made it on time, which, with really good planning, it’s no problem, but you just kinda hope that along the way all is good. So at the time what we were looking to do was… And this kind of goes off of what I said earlier about people working with us and doing things in different ways and learning. Really, our message to the faculty across the country was quite simple, is that, yes, there are challenges. Yes, you may have never, ever worked with a blind student before. But as long as you’re willing to work with us, and we’re willing to work with you, nothing is impossible. And that was the message that we were trying to deliver. We were giving examples of ways that people can work, how… Tell them about how we read textbooks with screen readers. Educating them on alternative text for images. Really outlining the challenges that we face as students who are blind trying to learn topics that had very high level of visual material. And that was basically what we were there to do. We were there to sort of build a space to give people the opportunity to ask us questions if they’re feeling uncomfortable about anything, and to really understand that when we’re in the class, it’s gonna be challenging, but it’s also an opportunity to sort of embrace a difference. And the faculty member we were talking about earlier that had us making the candy neurons was a beautiful example of that. She thought of that all herself. That wasn’t me saying anything. She saw what my challenges were. She knew what my challenges were. She knew what she had to teach. She knew what my challenge was going to be with that. And when she walked up to me with a bag of candy and said, “We’re gonna be making neurons,” I’m like, “What? What are you—”
Donna J. Jodhan, LLB, ACSP, MBA: What are you talking about, right?
Chris Schiafone: Yeah, like, “What are you doing here?”
Donna J. Jodhan, LLB, ACSP, MBA: Where are you coming from, candy?
Chris Schiafone: Yeah. But that was very ambitious. It was all her idea. We didn’t talk it out. We didn’t do anything. And that, to me, is an example of a faculty member who really wants to make sure that I’m included in the class, understands my challenges, and wants me to be successful. And just—
Donna J. Jodhan, LLB, ACSP, MBA: We need more people like that.
Chris Schiafone: Just as a side note, she’s been so supportive of everything, right up to the point of me now being a graduate student.
Donna J. Jodhan, LLB, ACSP, MBA: I’d like to interview this lady. I mean it. Bring her on, please. I mean, we need more people like this lady, who is not afraid to go out there and explore the world with someone like us.
Chris Schiafone: Yep, and she was definitely willing to do that.
Donna J. Jodhan, LLB, ACSP, MBA: You think she would be interested in an interview?
Chris Schiafone: Oh, I could have a chat with her.
Donna J. Jodhan, LLB, ACSP, MBA: Please. So the clock is starting to wind down, and I mentioned at the beginning that I’m awfully privileged to have you join the board of Barrier-Free Canada. Tell us, Chris, what’s in your cards for the immediate future? What are you thinking of? Where are you going?
Chris Schiafone: With Barrier-Free Canada, you’re asking? Sorry.
Donna J. Jodhan, LLB, ACSP, MBA: With anything. Tell us. Besides the bag of candy. Where are you going? Tell our listeners what you have up your sleeve for the immediate, say, next three to five years. Tell us.
Chris Schiafone: Well, currently right now I’m working on my master’s degree in psychology. Brain, Behavior and Cognitive Science is my specialization. I’m also working in the Centre for Vision Research, which I know you thought was rather interesting. Again, I have been very privileged to find a professor who works in—our lab is called the Virtual Reality and Perception Laboratory. And he, again, has been completely instrumental in ensuring that I get in there and get the opportunity to do what I’m setting out to do, and that things are set in place so that I could study there just like my other colleagues. So I’ve been set out on that path again. I’m now in my second year. I just started. I don’t know yet, but possibly PhD. But my work all centers around accessibility. Giving people who have vision loss and different learning needs the opportunity to have a different avenue to learning. So that not everything is just pick up the textbook and read. Or we expect you to know this, or go find the alt text, or whatever the case. My goal is to be able to have people be able to learn science, whether it be brain science or whatever the case, in a way that works for them. And a lot of that stems off to different things. I’m starting to learn about what’s called the cutaneous pathway, the sense of touch and how that works and how touch is translated from the time we put our finger on something to the time that it’s processed in the brain. I’m learning a lot about vision stuff. Some of it may be stuff that is outside of my realm of what I do, but nonetheless, life is a learning journey. And just because you set out on doing one thing or two things, that could be your focus, but that doesn’t mean that’s the only thing you’re gonna learn. And that’s my thing, to always continue learning. You will never stop learning.
Donna J. Jodhan, LLB, ACSP, MBA: No, no. Nobody would. Yeah.
Chris Schiafone: But having access to the materials and to the things that you need to have that learning opportunity is the conversation here. How can I have a 3D-printed model or a 3D-printed shape and be able to match that with a two-dimensional shape? What does that mean? What does that look like? How do you understand it? What works for you? If you’re a person who has a condition where your sense of touch is impacted, what do we need to do so that you can be successful in the world of touch?
Donna J. Jodhan, LLB, ACSP, MBA: Very true.
Chris Schiafone: And there’s a lot of conversation these days about the senses. The sense of vision is, of course, very, very highly looked at. It’s been studied for years. It’s still being studied, and they say that it’s probably the one sense that people will use the most. But the sense of touch is becoming now more of an area of study. It’s definitely not as big as vision, but we’re starting to learn that there’s different things that are picked up through our sense of touch that are either enhanced or do not get picked up in the sense of vision, as our sight. So that’s kind of what I’m working on for now. That’s what I’m hoping to keep working on, ’cause I’m very interested in this. There is an international group of people that work on this. I just attended the UK deafblind conference, which was a conference that happened online, and most of it was working with people who are deafblind. Lots of stuff about the sense of touch, lots of stuff about policy, and I got to learn differences even between here and the UK in the way that they have stuff set up for deafblind people, and it’s very encouraging.
Donna J. Jodhan, LLB, ACSP, MBA: This has been a very, very interesting interview for me personally, an eye-opener in many ways. It’s causing me to really sit back and think, how do I function, and how have I been able to function? And I urge you to stay in that field, but I also urge you to help out with Barrier-Free Canada. So you have two things I’m tasking you with. So I look forward to hearing whether your professor would want to be an interviewee, and I look forward to working with you. I think it’s going to be very, very interesting.
Chris Schiafone: Sounds great. I look forward to it also, and I think collectively, we could work together and make something really great happen.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So Chris Schiafone, am I pronouncing it there?
Chris Schiafone: There you go. You’re good.
Donna J. Jodhan, LLB, ACSP, MBA: Schiafone. Like, not Skyyphone, Schiafone.
Chris Schiafone: No, no. Hey, you should listen how screen readers pronounce it. They all pronounce it differently, and it’s all wrong. [laughs]
Donna J. Jodhan, LLB, ACSP, MBA: I know. Oh, Lord. Thank you very, very much. I really—
Chris Schiafone: Thank you also.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, and we will be in touch again soon.
Chris Schiafone: Thank you. All the best to you.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Thanks, Chris. Take care now.
Chris Schiafone: Bye now.
Donna J. Jodhan, LLB, ACSP, MBA: Bye-bye.
Podcast Commentator: [upbeat music] 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 #121: Interview with Chris Schiafone, MA Student, Department of Psychology, York University
🌐 Also available in: Français
🎙️ Listen to this Podcast.
In this eye-opening episode of Remarkable World Commentary, Donna J. Jodhan welcomes Chris Schiafone, who recently joined the revived board of Barrier-Free Canada as a director, to walk listeners through what he calls a journey through lived experience: growing up with low vision and extreme light sensitivity, learning to type at three or four and to read braille while he could still see, and losing the rest of his usable sight after high school. Chris explains how remembering what things look like lets him picture the spokes of a wheel or the shape of a pear, why students born blind need a deeper explanation and something to explore by touch, and how one neuroscience professor had his class build a neuron out of candy so that he could learn it by touch, alongside other low-cost materials such as string, clay, pipe cleaners and stencils.
Chris and Donna also talk about the 2019 forum in Halifax where Chris and his brother Brandon told faculty from across the country that nothing is impossible when professors and blind students are willing to work with each other. Chris, now a master’s student in psychology, describes his work in the Centre for Vision Research and the Virtual Reality and Perception Laboratory on learning through the sense of touch, a tactile drawing board from the American Printing House for the Blind and a recent online deafblind conference, while Donna compares his stencils with the cookie cutters she uses in her pottery and asks him to find out whether that professor would come on the show and to help out with Barrier-Free Canada.
TRANSCRIPT
Podcast Commentator: [upbeat music] 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, a lifelong disability advocate, and one who sees the world mainly through sound, touch, and stubborn optimism. I am a law graduate, an accessibility consultant, author, 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 Late 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.
Donna J. Jodhan, LLB, ACSP, MBA: Everything I do circles one goal, and that is 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. And before we jump into today’s conversation, let me shine a quick spotlight on today’s guest, a change maker whose work is as every bit as remarkable as the world that we are trying to build. I am very pleased and privileged to welcome Chris. And I hope I’m getting your last name pronounced correctly. Schiafone?
Chris Schiafone: Schiafone.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, Schiafone. Okay. Sorry about that. Welcome, Chris. We’ve known each other for a few years, and I am delighted to share with our listeners that you have recently joined the revived board of Barrier-Free Canada as a director. So welcome, and let’s going. All right. Chris, welcome to the Remarkable World Commentary.
Chris Schiafone: Thank you so much for having me.
Donna J. Jodhan, LLB, ACSP, MBA: You’re very welcome. You once said that if you wrote a book about your life, you would call it, quote, A Journey Through Lived Experience, unquote. The story of someone who starts out with low vision and ends up totally blind. For listeners meeting you for the first time, would you walk us through that journey, sharing as much as you are comfortable with?
Chris Schiafone: Sure. No problem. So from a very young age, I did have low vision, due to a condition that I have. I had extreme light sensitivity, so I wore dark glasses all the time. Got a lot of comments about, “Hey, cool shades, man,” and all that sort of thing without people knowing exactly what the issue was. That’s okay. As a kid, you kind of look at them like, “Sorry, dude, if you actually understood this.” [laughs] But no, nonetheless, I grew up being able to read large print, doing mathematics using extremely large textbooks. So I would go back and forth between large print and closed-circuit television for reading. Because we never knew the future of my eye condition and what was going to happen, my parents began to teach me how to type at around the age of three or four years old. As you could imagine, a kid at that age does not want to sit at a keyboard going A-S-D-F-G-H-J-K, A-A-A. And I hated it. But what I can say about that is as time went on, I learnt, of course, how to write using bold markers. That’s what I had to use because regular pens did not work for me. I also needed bold-lined paper because the regular lined paper that everyone else uses, the lines were too light and they were hard for me to see. So I had to use that. In high school I used a combination again of large print and closed-circuit television with regular textbook, but in a lot of case, regular textbook. I always preferred to have my reading material with inverted colors, so white letters on a black background. I found that reduced the glare both on the computer and on the closed-circuit television, and I was more comfortable doing things that way. Now we’ll transition from vision to no vision. Shortly after I finished high school, I started having some issues that we didn’t really know about. There was a couple of times where I woke up and was fine when I laid down, but then woke up and couldn’t see for a bit. And the first time it happened, I remember being extremely nervous because I thought, “Oh, no. That’s it. My vision’s gone.” That happened not to be the case. And so over time my vision changed to the point where it is right now, which is light perception vision. I don’t have anything usable anymore. I can’t use the closed-circuit television or anything like that. But I will tell you, the skills that I learnt as a child, how to type. I learnt braille before I lost my vision, both grade one and grade two braille. I know it’s changed now to UEB braille, so what I learnt back then may not be totally relevant, but things have changed. But nonetheless, there wasn’t a ton of transition when I actually lost the remainder of my vision. I think it was more frustration because it was things that I could do before that were so much easier, like glance down on a sheet of paper, as opposed to having to go figure it out on the computer or having to go ask somebody for help with something. I think that was a frustration more than me having to actually adapt to, okay, I didn’t know braille. I can only imagine if I didn’t know braille, I didn’t know how to type, and I didn’t have all those kinds of skills to bring with me, we’ll say, into the transition from partial vision to total vision loss.
Donna J. Jodhan, LLB, ACSP, MBA: I can understand what you’re telling me because I was born with little to none, got a whole whack when I was a teenager through a cornea transplant. I learnt to read and write and do all kinds of things, and then I lost it about 15 to 20 years ago, through a retinal detachment. So I still believe in my braille. Braille saved me when I finally lost most of my vision. A lot of people, I don’t know, they still don’t think that there’s a place for braille, but I do. I do. So I understand what you’re telling our listeners.
Chris Schiafone: Yeah. And I think a lot of it is to do with technological advancements and people’s backgrounds. If they’ve never learnt braille before, they never enjoyed to learn braille, or maybe they were even forced to learn braille, there’s a whole host now of different technologies. For example, audiobooks, Audible, electronic books and different kinds of systems. And unfortunately, I hate to say it, but a lot of the platforms are very different. So what you might find on Audible you wouldn’t find, let’s say, on something like Bookshelf or VitalSource, which is a professional kind of platform where you can go buy textbooks and things like that. So not everything is the same across the board, but where the technology has gone, I’ve seen many people say, the technology is there and maybe they perhaps don’t feel that they need braille. But looking back at it now, all the frustrations, all the I didn’t wanna do it, all why are you making me learn this? I’m very grateful to my parents for having me do this.
Donna J. Jodhan, LLB, ACSP, MBA: All right. So you have said that you feel very fortunate to remember what things look like, so that if someone describes the spokes of a wheel or the shape of a pear, you can picture it. How do those visual memories help you learn today, and what do you think that students who were born blind need that may be different?
Chris Schiafone: That is a very, very loaded question, but a very interesting one.
Donna J. Jodhan, LLB, ACSP, MBA: Sorry. [laughs]
Chris Schiafone: It’s okay. No problem actually. So in my opinion, when you have grown up to even have some vision and you are shown different items… You referred to the spokes of the wheel or the shape of a pear. That is one of many, many, many things that we could use as examples. These are kinds of things that we would pick up visually, we can pick up tactfully. We get to know them over time as we grow up because we see what they look like. Oftentimes those who have a lot of vision may not, or have full vision may not, appreciate or understand or pay attention to certain things, like for example, the shape of what a pear might be or an apple or a tree branch or something like that. But for those who have vision loss, those are very important details. And so now that I’ve lost my vision, I find that a lot of those types of things come by way of visualization. So because I could see it before, I could sort of draw a picture in my mind of what it would look like if you said to me, “I have a bicycle wheel in my hand.” Now, again, spokes of a wheel come in different shapes and sizes and all that sort of thing. But generally speaking, I have the concept because I have been able to see them and I’ve been able to trace them tactfully. For someone who is born without sight, I feel like there has to be a much deeper experience of explanation and a tactile experience for them to actually be able to learn what something means. If I say to you, for example, “This is a C-shaped structure.” And when I say C here, I’m referring to the letter C. If you’ve never seen what the letter C is shaped like, or you’ve never been able to haptically explore through touch the letter C as a stencil or as anything else, what would me saying to you a C-shaped structure actually mean? Where would that leave you?
Donna J. Jodhan, LLB, ACSP, MBA: I think for someone who was born with no vision, it means nothing. For me personally, I had vision before I lost it now. So, like you, whenever you say anything, I can picture it in my mind. But I know that my music teacher once said to me, he said, he called me DJ. He said, “DJ, I don’t even know what the sun looks like.”
Chris Schiafone: And see, that’s a very good example right there of someone who’s never… And I mean, we’re not gonna take him to touch the sun. That one there, that one—
Donna J. Jodhan, LLB, ACSP, MBA: We can’t do that. [laughs]
Chris Schiafone: That one there would rely on very heavily described information. And if somebody could somehow make a tactile version of what the sun looks like and allow him to explore it, then perhaps he can build a bit of a visualization of what the sun is like or what is represented by the sun. And that’s the difference between having some vision, even if you don’t have full vision, and having no vision. That you can have adaptations if you have even limited vision. I’ll give you another example quickly. At the baseball game, I used to go to baseball games when I was young. And even though I couldn’t see what was happening, we could take binoculars, and I could look through the binoculars and watch what was going on on the field. I also could listen auditorily to hear when the bat hit the ball. So right there you have two examples of things that I was able to do as a sighted person. But actually the binoculars as a sighted person I could do. The sound of the hitting of the ball was something that I could hear. So I actually didn’t need to see that. It would be helpful to see where it went when they hit the ball. But nonetheless, you can tell that the bat made contact with the ball.
Donna J. Jodhan, LLB, ACSP, MBA: That reminds me of when I used to go to hockey games in Montreal, and I could see the players going up and down the ice. I could see them skating. I could see the puck. I could see the stick through binoculars, right? So now, whenever I, up for a game, I can visualize it. So I am—not empathize, but I understand where you’re coming from. Yeah.
Chris Schiafone: And I’m sure at the hockey game, the sound of the sticks are a good cue to you as to where the players are collecting for the puck. So there’s many auditory cues that I’ll say can… I’m not gonna say can fully replace the visual part of it, but there’s certain things that we learn over time, going from sight to no sight or going from description to sound, if we never had vision. That we can learn the relationships of these things.
Donna J. Jodhan, LLB, ACSP, MBA: I think we have a lot in common. I see where you’re coming from. All right. You have pointed out that a scientific textbook averages about 11 images for every 1,000 words. Tell us, what was it like to study psychology, statistics, and neuroscience as a totally blind student, and which barriers surprised you the most?
Chris Schiafone: Oh, you hit a very interesting topic here.
Donna J. Jodhan, LLB, ACSP, MBA: Another one, eh? [laughs]
Chris Schiafone: [laughs] It’s okay. It keeps the whole thing interesting, so I’m someone who likes to learn, and I will sometimes pick stuff that’s a little more challenging because I like to think that we cannot be told that we can’t do something until we at least try. It is easy for you to say, “Oh, I can’t do that because of whichever reason,” because the textbook is full of diagrammatic properties. Or it’s easy for someone to say to us, “Oh, I don’t think you can do that because it’s very challenging. There’s a lot of visual images.” But the reality of that is I haven’t tried yet. I know it’s easy to make assumption based on not having vision. But there are so many things out there today that could assist with such things if people are willing and able to work with us. And we are willing to work with them. So some of the barriers that I faced in these courses were, for example, data collection information that were then translated into what they call data visualization, where there’s charts, graphs, and diagrams that outlined results from research papers. Or that resulted from stuff that the professor had done, and they were using them as a learning tool. Oftentimes for that I had sighted help to assist me with that, so that’s kinda how I got through that portion of it. Unfortunately, in some cases, we have wonderful technology out there for people with vision loss, very helpful stuff, makes us independent. Sometimes, though, we need to still ask for assistance, and we shouldn’t be afraid to ask for assistance. It’s just the reality of it. It doesn’t mean that we can’t do it. It just means that we need to find another way to do it. And part of that has to be our own thought process, our own ideas, or… And sometimes it has to be a collective effort on the part of yourself and your faculty or your boss or whoever it is you’re trying to work this problem out with. Is there anything more specific that you wanna know about that?
Donna J. Jodhan, LLB, ACSP, MBA: No, I’m just very intrigued because I think what you’re saying, to me, makes sense. It’s a team effort between you and those helping you, or me and those helping me. And you find workarounds to things. It may not be perfect, but it’s enough to get you going, right?
Chris Schiafone: Yep. And the other thing is too is looking at what kind of tools are available in your toolbox for you to be able to use. You mentioned about neuroscience. One of the things that I have here that I use is a 3D brain model. And it’s in multiple parts. And I could take it apart and feel different components of the brain or different structures of the brain. And actually, the example I gave you earlier about a C-shaped structure, that was a realistic example from a neuroscience textbook. It was describing the corpus callosum, which is the area that goes between the left and the right hemispheres. Basically, that’s how your brain is connected. And so when they described it in the textbook, they said a C-shaped structure. And when I thought about this, I’m thinking, so as someone who’s been sighted before and lost his vision later in life, I totally know what you mean. I can take this model, open it up, find the C-shaped structure, and say, “Oh, there it is.” For someone who’s never had sight, that’s a problem. So this is kind of where my work on this all started. And where it kinda came down to that number of 11.1 images or every thousand words or so was actually part of my undergraduate thesis work. And that’s when I really started taking a look at this and saying, “Okay, how can we represent this information to people that are totally blind that choose to learn it?” Because they should be able to. Just like anybody else, they wanna learn different things, and just because it’s challenging doesn’t mean that they shouldn’t learn or can’t learn or should be told that they should go do something else because this is too complicated.
Donna J. Jodhan, LLB, ACSP, MBA: It’s a very interesting opinion, and I do agree. I mean, no reason why they shouldn’t learn. They just have to use a different approach, right? Okay. I understand that one of your neuroscience professors had your class build a model of a neuron out of candy so that you could learn it by touch. Why do simple, low-cost ideas like that matter so much? And what are other everyday materials have you seen turn a picture into something that a blind student can truly understand?
Chris Schiafone: So the story about the neuron, the candy neuron pictures is kind of interesting. I had a very, I’ll say wonderful neuroscience professor in undergrad. She did everything she possibly could to make sure I was included in the class and that things were as adapted to me as possible. As part of this, she was trying to teach us the structure, like the anatomical structure of the neuron. And knowing that I couldn’t see it, and us not having three-dimensional models available at the moment that I could observe, she decided to turn that into a class activity where we took craft supplies basically and candy, just like little candies like that you’d buy at the bulk food store or whatever the case. And the task was to come up with a raised line graphic made from candy that represented a neuron that I could feel as she had the information up on the board for the sighted students. So we were all doing this as a team, and it was all a learning process, but basically what she did was she had the information, her slides and stuff up on the board, and she gave us a practical activity that I could do that really was, I guess, so that I can learn. But as I’m learning as I go through my research and we talk about people learning differently, she probably helped more than just me in that class. So it was a very fruitful activity to undertake. It was a lot of fun, ’cause we were trying to sit here with Nerds candies and trying to figure out how to make neurons and different things like that. So it was quite interesting. As far as other low-cost items like you’re talking about, that’s a good question, because a lot of anatomical models can be very expensive, especially depending on the level of detail. I did one session, during the pandemic actually, where people just found things around their house, whether it be string, whether it be, oh, I don’t recall. Paper, construction paper, whatever it is, stuff that they had around the house. And there was instructions sent out to them, and we got together on Zoom in a group and we had them basically make this model out of household items. Unfortunately again, that was during the pandemic. But one thing that the person who was heading the workshop did, and she was at the time a person training for her master’s in inclusive design. She had each person describe to me what they used and how they made their neuron based on the picture that they were given, because I wouldn’t be able to see it on the screen, right? Again. So she got them thinking about a couple of things there. Number one, how could we use low-cost home like things, regular things that we have at home to take and, maybe even stuff that would’ve been thrown in the garbage, and use them for assistance in learning. In this case it was the neuron, but it could have been many other things also that they could have done with it. Other things are things that you can maybe buy from, I would say like a Michaels art supply store or something. So if you can get some clay, some pipe cleaners, some wooden dowel type of things. Depending on what it is you’re trying to make, those are lower cost items that as long as you have a good idea of what it is that you’re trying to put together, you could potentially do that and use it as a tactile means for someone who has vision loss. Especially if it’s something that is a timely project. In other words, the lecture’s in three days and you need to get something. I mean, the models are by far the best, because they’re as realistic as possible. But again, the models are very high cost. There is time with manufacturing them. Sometimes the models come from Germany. There’s a company in Germany that makes anatomical models. They’re very good. But that means then that they have to manufacture it and they have to send it to Canada, to the company that’s here, and then you purchase them, and then it goes from there. So, in a nutshell, that’s kind of how this process has worked in my experience. Other people might have other ideas, but this has been my experience.
Donna J. Jodhan, LLB, ACSP, MBA: As a potter, and I’ve been doing pottery for quite a few years now, I use cookie cutters as part of my models. I also use dishes, bowls, and salad plates and everything to make my own pottery. So I think there’s similarities here that I think I understand. Yeah.
Chris Schiafone: Well, one of the things that I’m gonna be exploring with soon here is I bought a tactile drawing board.
Donna J. Jodhan, LLB, ACSP, MBA: Ah. Is that the BrailleDoodle?
Chris Schiafone: No. Well, what this is is it’s a device that you buy through… The only place I’ve seen it is the American Printing House for the Blind. And it is essentially a board that has a felt kind of piece in the middle of it. And it comes with a special paper, and you clip the paper into the board so that it stays put. And it comes with a stylus that looks exactly like a pen. And you can draw on this, and then what happens is when you draw on it, it comes up as a raised line graphic. So then what I did was I went out and purchased a number of—actually from Amazon, they have a kit with shape stencils. All different shapes, all different sizes. And I’m gonna explore doing 2D shapes and 3D shapes. 2D shapes using the drawing kit and 3D, possibly with a 3D printer or some other device to do that. So that’s another way of doing it that I’m looking to explore.
Donna J. Jodhan, LLB, ACSP, MBA: So in essence you have a drawing kit from the American Printing House for the Blind. And then you went on Amazon and you bought yourself a kit of stencils. Very interesting. No, I mean it. Because see, what I do, I go on Amazon and I purchase cookie cutters in the shapes of what I want. Right now I am developing a Canadiana line of things. Like, you have dishes with maple leaves, you have dishes with, or pieces with different Canadiana things like a beaver, a snow goose. Things like that. So this is very interesting. Very interesting.
Chris Schiafone: And see, the cookie cutters, when you look at a cookie cutter versus a stencil, they probably would interact together differently haptically while you’re doing these tasks because the stencils are just sort of plastic with the shapes of different sizes cutting out of them. There’s not much in between the top of the stencil and the paper line. Whereas with a cookie cutter, a lot of times they’re a little bit thicker. They’re a little bit higher off. So you sort of have a different kind of… You have the edge on the paper. But it’s also higher off the paper at the top, and the manipulation of whatever tool, whether it’s a paintbrush or the stylus or whatever that you’re trying, the manipulation of that tool is gonna be different because of the tool that you’re using to trace the shapes.
Donna J. Jodhan, LLB, ACSP, MBA: And I work with clay, so then it’s a different medium that I’m working in.
Chris Schiafone: One day I will have you teach me. [laughs]
Donna J. Jodhan, LLB, ACSP, MBA: [laughs] Oh, you will have to teach me, too. [laughs]
Chris Schiafone: Well, there you go. We all learn together, right?
Donna J. Jodhan, LLB, ACSP, MBA: Oh, yes. Why not? All right. So you and your brother, Brandon, who is also blind, have presented together, including a 2019 forum in Halifax on understanding the needs of disabled students. What has it meant to share this path with a sibling, and what did you most want faculty from across the country to take away from that session?
Chris Schiafone: So I’ll start with the first part of the question. To present with a sibling was very interesting. He and I have lots of conversations about different kinds of topics, whether it be stuff to do with accessibility, whether it be stuff to do with education. We have very different interests, but we can have very similar discussions, if that makes sense. And it was great to be able to have the two of us work there, and that whole setup was thanks to my department head of psychology in my undergrad and his faculty where he was training at the time. It was my first presentation nationally. It was his first presentation nationally. My department head of psychology at the time was extremely supportive of my work. He totally understood what it was I wanted to do. He was into teaching me about how to write abstracts and do things. And, as I may talk about later, I’m at the point now where I’m not just writing those abstracts, I’m actually reviewing those abstracts. So, but back to 2019, that was our first shot. We drove across the country from Toronto to Nova Scotia.
Donna J. Jodhan, LLB, ACSP, MBA: Okay. Keep it up.
Chris Schiafone: Thanks to my father, by the way. He is the one that drove. I wouldn’t drive. I don’t think that’d be a good idea if I drove. What do you think?
Donna J. Jodhan, LLB, ACSP, MBA: I don’t think so, no. I would be off the street. If I knew you were coming down the street, I’d be gone.
Chris Schiafone: I’d love it, but I don’t think that’d be a good idea, so we—
Donna J. Jodhan, LLB, ACSP, MBA: No, not right now.
Chris Schiafone: We all packed up and off we went. And the day that we arrived, we were the first presentation the next morning. So we had to make sure that we made it on time, which, with really good planning, it’s no problem, but you just kinda hope that along the way all is good. So at the time what we were looking to do was… And this kind of goes off of what I said earlier about people working with us and doing things in different ways and learning. Really, our message to the faculty across the country was quite simple, is that, yes, there are challenges. Yes, you may have never, ever worked with a blind student before. But as long as you’re willing to work with us, and we’re willing to work with you, nothing is impossible. And that was the message that we were trying to deliver. We were giving examples of ways that people can work, how… Tell them about how we read textbooks with screen readers. Educating them on alternative text for images. Really outlining the challenges that we face as students who are blind trying to learn topics that had very high level of visual material. And that was basically what we were there to do. We were there to sort of build a space to give people the opportunity to ask us questions if they’re feeling uncomfortable about anything, and to really understand that when we’re in the class, it’s gonna be challenging, but it’s also an opportunity to sort of embrace a difference. And the faculty member we were talking about earlier that had us making the candy neurons was a beautiful example of that. She thought of that all herself. That wasn’t me saying anything. She saw what my challenges were. She knew what my challenges were. She knew what she had to teach. She knew what my challenge was going to be with that. And when she walked up to me with a bag of candy and said, “We’re gonna be making neurons,” I’m like, “What? What are you—”
Donna J. Jodhan, LLB, ACSP, MBA: What are you talking about, right?
Chris Schiafone: Yeah, like, “What are you doing here?”
Donna J. Jodhan, LLB, ACSP, MBA: Where are you coming from, candy?
Chris Schiafone: Yeah. But that was very ambitious. It was all her idea. We didn’t talk it out. We didn’t do anything. And that, to me, is an example of a faculty member who really wants to make sure that I’m included in the class, understands my challenges, and wants me to be successful. And just—
Donna J. Jodhan, LLB, ACSP, MBA: We need more people like that.
Chris Schiafone: Just as a side note, she’s been so supportive of everything, right up to the point of me now being a graduate student.
Donna J. Jodhan, LLB, ACSP, MBA: I’d like to interview this lady. I mean it. Bring her on, please. I mean, we need more people like this lady, who is not afraid to go out there and explore the world with someone like us.
Chris Schiafone: Yep, and she was definitely willing to do that.
Donna J. Jodhan, LLB, ACSP, MBA: You think she would be interested in an interview?
Chris Schiafone: Oh, I could have a chat with her.
Donna J. Jodhan, LLB, ACSP, MBA: Please. So the clock is starting to wind down, and I mentioned at the beginning that I’m awfully privileged to have you join the board of Barrier-Free Canada. Tell us, Chris, what’s in your cards for the immediate future? What are you thinking of? Where are you going?
Chris Schiafone: With Barrier-Free Canada, you’re asking? Sorry.
Donna J. Jodhan, LLB, ACSP, MBA: With anything. Tell us. Besides the bag of candy. Where are you going? Tell our listeners what you have up your sleeve for the immediate, say, next three to five years. Tell us.
Chris Schiafone: Well, currently right now I’m working on my master’s degree in psychology. Brain, Behavior and Cognitive Science is my specialization. I’m also working in the Centre for Vision Research, which I know you thought was rather interesting. Again, I have been very privileged to find a professor who works in—our lab is called the Virtual Reality and Perception Laboratory. And he, again, has been completely instrumental in ensuring that I get in there and get the opportunity to do what I’m setting out to do, and that things are set in place so that I could study there just like my other colleagues. So I’ve been set out on that path again. I’m now in my second year. I just started. I don’t know yet, but possibly PhD. But my work all centers around accessibility. Giving people who have vision loss and different learning needs the opportunity to have a different avenue to learning. So that not everything is just pick up the textbook and read. Or we expect you to know this, or go find the alt text, or whatever the case. My goal is to be able to have people be able to learn science, whether it be brain science or whatever the case, in a way that works for them. And a lot of that stems off to different things. I’m starting to learn about what’s called the cutaneous pathway, the sense of touch and how that works and how touch is translated from the time we put our finger on something to the time that it’s processed in the brain. I’m learning a lot about vision stuff. Some of it may be stuff that is outside of my realm of what I do, but nonetheless, life is a learning journey. And just because you set out on doing one thing or two things, that could be your focus, but that doesn’t mean that’s the only thing you’re gonna learn. And that’s my thing, to always continue learning. You will never stop learning.
Donna J. Jodhan, LLB, ACSP, MBA: No, no. Nobody would. Yeah.
Chris Schiafone: But having access to the materials and to the things that you need to have that learning opportunity is the conversation here. How can I have a 3D-printed model or a 3D-printed shape and be able to match that with a two-dimensional shape? What does that mean? What does that look like? How do you understand it? What works for you? If you’re a person who has a condition where your sense of touch is impacted, what do we need to do so that you can be successful in the world of touch?
Donna J. Jodhan, LLB, ACSP, MBA: Very true.
Chris Schiafone: And there’s a lot of conversation these days about the senses. The sense of vision is, of course, very, very highly looked at. It’s been studied for years. It’s still being studied, and they say that it’s probably the one sense that people will use the most. But the sense of touch is becoming now more of an area of study. It’s definitely not as big as vision, but we’re starting to learn that there’s different things that are picked up through our sense of touch that are either enhanced or do not get picked up in the sense of vision, as our sight. So that’s kind of what I’m working on for now. That’s what I’m hoping to keep working on, ’cause I’m very interested in this. There is an international group of people that work on this. I just attended the UK deafblind conference, which was a conference that happened online, and most of it was working with people who are deafblind. Lots of stuff about the sense of touch, lots of stuff about policy, and I got to learn differences even between here and the UK in the way that they have stuff set up for deafblind people, and it’s very encouraging.
Donna J. Jodhan, LLB, ACSP, MBA: This has been a very, very interesting interview for me personally, an eye-opener in many ways. It’s causing me to really sit back and think, how do I function, and how have I been able to function? And I urge you to stay in that field, but I also urge you to help out with Barrier-Free Canada. So you have two things I’m tasking you with. So I look forward to hearing whether your professor would want to be an interviewee, and I look forward to working with you. I think it’s going to be very, very interesting.
Chris Schiafone: Sounds great. I look forward to it also, and I think collectively, we could work together and make something really great happen.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. So Chris Schiafone, am I pronouncing it there?
Chris Schiafone: There you go. You’re good.
Donna J. Jodhan, LLB, ACSP, MBA: Schiafone. Like, not Skyyphone, Schiafone.
Chris Schiafone: No, no. Hey, you should listen how screen readers pronounce it. They all pronounce it differently, and it’s all wrong. [laughs]
Donna J. Jodhan, LLB, ACSP, MBA: I know. Oh, Lord. Thank you very, very much. I really—
Chris Schiafone: Thank you also.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, and we will be in touch again soon.
Chris Schiafone: Thank you. All the best to you.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Thanks, Chris. Take care now.
Chris Schiafone: Bye now.
Donna J. Jodhan, LLB, ACSP, MBA: Bye-bye.
Podcast Commentator: [upbeat music] 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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