Latest / The Eko Lens Podcast / Living with Retinitis Pigmentosa: Ben's Journey
Transcript
- speaker-0: Welcome to the Echo Lens, the podcast where we view assistive technology through the eyes of lived experience. I'm your host, Dr. Kinesha now, senseless episode. Last episode, I got my doctorate, so now we are Dr. Kenesha. And each week we're gonna explore how dignity, design, and innovation really interact to empower blind and low vision communities. We're not just reviewing tech, we're reframing it. So this is a space for truth. Telling, for honoring the voices that often go unheard, and for challenging the industry to do better. So whether you're a developer, a user, or someone who simply believes in equity, you're in the right spot. And this is the Echo Lens. Let's take a closer look. Well, I'm super excited because this week we have Ben, and I came across Ben on social media, probably one of the groups or something that we're in. And Ben reached out to the Echo Lens and was like, I would really love to be a guest on your show. So I got to talking to Ben, and Ben has done some super awesome stuff in the community. So he has a Ghanaian Canadian multidisciplinary thought leader, a digital creator, an entertainer, and an advocate who's living with Retinized Pigmentosa. So his work really lives at the intersection of music and storytelling and culture, identity, and social impact, all of the things I'm Always talking about and living on my end too, and really shaped by your lived his lived experience as a black man navigating disability and creative creativity. So Ben is the founder of Brightside Scope. Brightside Scope is a platform that's dedicated to empowering racialized individuals and peoples with disability as well. Amplifying marginalized voices through public speaking, digital creation, consulting, workshops, and media appearances. Ben, welcome to the area of having a social work background because I feel like so many of us on this platform who are dealing with a disability went into social work. So ⁓ Ben has a social work background, bachelor of social work, masters of social work, and really brings back. That ⁓ professional insight and lived experience to his work. He's an active member of the National Black Disability Coalition and contributes to a national disability initiative committee. So this committee really helps shape conversations and advocacy efforts at a broader systemic level. Ben, you're also the founder of a Black Blind Men's Group. So you create space for community, connection. and shared lived experiences. So I'm super excited to have you on the podcast, Ben. Your bio is very impressive and we are super excited to learn a bit a little bit from you today. speaker-1: Absolutely. And I hope I hope that I live up to my bio today. I don't make you like these expectations, but thank you, Doctor Kanisha, for having me today. I love the ring of that. I'm excited for you. Yes, thank you so much for having me today. And ⁓ would you like me to share a little bit of my story, I guess? speaker-0: No pressure. Thank you so much. Yeah, so I would first love to hear a little bit of your story and I would love to hear a little bit about your personal journey in your connection to the blind and low vision. speaker-1: Absolutely, absolutely. And I always compare it to a roller coaster, like the ups, the downs, the rounds, the loops, because I actually lived with or I was diagnosed with retinitis pigmentosa at two years old. So with that said, I had the genetic eye condition, but to be honest, I didn't really even identify with being blind or even low vision. I I did utilize the services. I did utilize some of the technology growing up, but it was something where I just couldn't convince myself that, yo, I I belong to the blind low vision community. So a lot of the times, especially growing up in school, I refused to use my technology. I did not know anybody else who was ⁓ low vision. Maybe when I went to camp a couple of times, I met a couple of people, but it just didn't go into my brain. I like to call it you remember Scooby Doo when people would be like, ⁓ it's a dog and Scooby would be like, Where? Like, what dog? You know? So that's that's exactly how it was. People would be like, ⁓ you're you're you're low vision, you're blind I'd be like, Where? What are you talking about? Me? Like speaker-0: Interesting. Yeah. Yeah. So so you knew that you had low vision and blindness, but you chose to identify not to have it almost. Like, do you think that it was that you didn't want to be real or that was your family educated on the topic? Like did they understand what that meant? speaker-1: Good question. Basically coming from Ghanaian parents. So my parents were born in Kumasi, Ghana. And they came to Canada just before I was born. They lived in Europe before that. But came to Canada just before I was born. For a family because back at home even with ⁓ my culture of Ghana, Ghanaian culture, a lot of things are black and white. Like you're either blind or you're not, right? Like like what is going on? How's he catching a football? Or how's he feel like a basketball? Or how's he running around like a chicken with his head cut off? And you're telling us that he he can't see. So it was very confusing. And just like any parent, no one's expecting the kid to have a disability. And a lot of parents are not prepared for it. Right. So even with that said, I was never really educated I was handed a cane and I did use the services, but it was just like I refused to really accept it. I was in denial and I think at one point my my family was in denial because we never speak about it, right? And any time I would make a mistake, they'd be like, ⁓ You're tired, you're tired. So with that in my mind, like I hated being different and then even add this layer, Kenisha. And this is something you probably understand as well, is the fact that, yo, as a black man, like to be like I'm blind, you know what I mean? And to have that vulnerability of having a disability 'cause you always have that layer of ignorance or you have that layer that you can't comprehend, then add disability onto that. So it just makes it me as a person extra sec insecure, you know what I mean? Yeah. speaker-0: Yeah. So it sounds like your family didn't really accept a little bit that blindness is a spectrum. That it isn't just black and white, right? That there's all different types of blindness and you can have this much vision at this time and a different amount of vision at another time. Okay. Very interesting. Very interesting. For those who don't know, I think we've had a couple of guests who have had ret retinized pigmentosa, but retinized pigmentosa pretty much eats away at your retina, right? ⁓ and leaves you with central vision. So what what vision do you currently have? speaker-1: So right now I'm a cane user and a screen reader user. So basically I could still see, but as the years got on, it is a little bit a little bit foggy. Yeah. Sometimes there's distortions in front of my eyes. But for the most part, I could see like outlines of people. Sometimes if it's a good day, I could see faces and noses and a little bit of people's mouths. If I put my palm in the right setting of light, I could see like the lines in my palms. Yeah. So even with that said, like growing up it was night blindness. A lot of night blindness it would have to be certain amount of light for me to be able to see properly. And then distance you could throw out the window. I can't see past light. speaker-0: Yeah, yeah, my distance is awful as well. No, no. Interesting. And another thing I was going to ask too is, you know, because that changed over time, right? When did you come to the realization or the acceptance of your blindness? speaker-1: Exactly. Yeah, no what's like losing vision, it was gradual. And I am so happy for today where I am in accepting it because there was times that even I would tear up talking about my vision. Like it was so hard to even be real with people and say, like, I'm I'm low vision, right? It was also that fear of with RP, it is a possibility of going fully blind, right? And in a way that that does still kinda ⁓ does still to kinda get to me, but then at the same time I know like I'm riding the wave, right? Like you just never know what's out the technology or even just like supports, right? Yeah. So I find that it took me I feel like I fully accepted it after I started working at the school for the blind and also I went to something called young leaders and in Canada I it's by Fighting Blindness Canada and they get young people together and I saw like it was people who were DJs, people who are journalists, people who are accountants and just there was even a person who is a model as well and I was like, Whoa, okay. ⁓ these people are are doing their thing over the years just being connected with other people who are really just just cool people using their canes and I was like, yo know what? I think it it helps me more. So I find the more you accept something, the more people gravitate to you, right? And the more easy life gets. Even such a journey and even as I made mention with my parents not feeling comfortable, they took this journey with me as well. And they they really support me as well. And they really support myself whatever I need with like my journey and they're very, very proud of me for sure for everything I've accomplished. speaker-0: Well, you've definitely accomplished a lot. That's no feat for sure. And ⁓ I love hearing that, you know, you came to acceptance like using your cane and things like that. I'm still in that uneasy like I was using it so much when I couldn't drive. So I have if you missed a couple of episodes, I have these special eScoop glasses, they're called, and they were made specifically to be able to correct my vision just enough to drive during the day. And only with no weather, but I still should be using my cane, like when I go into stores with fres fluorescent lights, pretty much dusk until dawn the next morning. All of these different things. And I I was I was doing it all the time. And then I was like, why am I doing this now that I have these glasses? But no, I I need to go back to doing it because it's not really getting anywhere. I'm always running into things or tripping or falling or whatever it may be and it would it would make my life a lot easier. So I I I need to come to that realization too, Ben, that it's it's okay to use our system devices to be able to help us. Even if folks are staring at us thinking that, but you can see a little bit, it's okay. Like, no, but that's the point. We don't want to strain what we have, you know, trying to get around and prove prove a speaker-1: And it is it boggles my mind how comfortable I get around with a cane. People around me, they see me go downstairs and actually a funny story. I remember when I first started using my cane a around my friends, like that I grew up with, right? 'Cause before I could tell the a little bit of the discomfort with me using it. And I was in Jamaica for a wedding and and my buddy was kinda like, ⁓ put that away, like I never seen you use it, like, what are you using that for, right? speaker-0: Mm. ⁓ my gosh, I feel this. Yes. speaker-1: I remember like we're going down a flight of stairs and I use my cane like you use it and he saw and was just like, Whoa, okay, keep using that, keep using that, keep going Yeah. It was just so because just I guess the way I usually go down it's like so ⁓ so much trepidation, right? So just that comfort. He's like, Yeah, yeah, use that for now. speaker-0: Yeah. ⁓ my gosh. That reminds me too. I was with a group of girlfriends and we went out like dancing and I was like, Do I bring my cane? Do I not? And they're like, Don't bring your cane. We don't want to see like, you know, they don't want to be around the girl with the cane at the club. Right. So I was like, Okay, but maybe I should because I really can't see anything that we're doing and you want me to go in the dark and dance and stuff. So no, I get that. So Ben, you say you work at a school for the blind? speaker-1: Not anymore. I used to. speaker-0: Okay. Okay. Tell us about working at the school for the blind. speaker-1: Yeah, absolutely. I feel it definitely opened my heart up to to the students, right? The one thing a funny story about when I first started. When I first started, I was like, ⁓ I'm gonna work at a school and I'd be so inspiring to these really great kids who who wanna be ⁓ the best they can be and they can follow my lead, like get education and and Just be amazing and I can't wait for to work with these good kids. I'm gonna be like the role model, right? Mm-hmm. I get there and I was in ⁓ because it it's actually almost like a boarding school. So if they're too far out, they end up sleeping at the school for the week. And I used to work in the units, so it's almost a combination of like a camp counselor, like a support home, almost a teacher, like just all that combined, right? So I had grade nines and ⁓ my gosh, they just got in so much trouble. Yeah. And I remember my first year, just because I wasn't expecting it, they made my life like really tough. Like and I was like, what? I thought they would be like angels, but you know what? They were just like regular teenagers. And that really opened my eyes. pun intended, the fact that in society always think like, okay, someone's blind, low vision, they live with a disability, they're well behaved, they don't they're not interested in in certain certain hobbies or certain aspects. But no, it's just like any other kid. Just you have low vision blindness attached to you, right? And even like just growing up, I felt that I had to disassociate blindness to have other hobbies or to make a statement to others that I have other interests, right? speaker-0: Yeah. speaker-1: It really opened my eyes to it. I had a blast. Some great skills. It's some great connections. And it's so it's almost like it it's weird because sometimes I see my students all grown up and I'm like, damn, I think I'm getting older and like how you have a mustache now, a beard. What's going on, man? speaker-0: Ben, I wanna talk a little bit about technology from your perspective of lived experience in everyday life. And I would love to know because you did talk about how when you were younger that you would use the services and maybe use the devices that were given to you, things like that. But wanna what is one assistive tool now that like has made this meaningful difference in your life and in your work? Something that like you really depend on, besides your cane. speaker-1: Am I allowed to say like mobile apps or do I have to Yeah. So I feel like the the safe answer, the most diplomatic answer to to say is Jaws. But no more that's that's a boring answer. That's a boy. speaker-0: Yeah, absolutely. Yeah. But boring hey, it's not boring. I use fusion, which is Jaws and the zoom the zooming together, so I get it. speaker-1: Yeah. No what? Jaws I feel like is the default. But no what? I will say like be my eyes and Ira and I'll group them all together. And it just feels like out of I'm I'm thirty s actually I just turned thirty eight. I almost said thirty seven. Yeah, thank you, thank you, thank you. So I am ⁓ thirty eight. speaker-0: You just had a birthday, happy birthday. speaker-1: And I remember even like growing up and just imagine, wouldn't it be cool to like hear me at Winners and just be like, I wanna read the tags, right? And I used to have like this manual magnifier that read the tags with for when I was working at Winners or when I was working at the movie theaters. And it's so mind blowing that now you have just an app, you call someone almost like a FaceTime, boom, they help you out with a quick task. Same with IRA. And even like, okay, I'm cheating now. Because I'm gonna bring out other apps. Like even things like Orion where you drop something on the floor and you just type it in, search for this and then scan, and it helps you find it. As growing up, so many times where I drop a lip chop and I'll be like, Yup, it's gone to the abyss. I'm not even gonna try Or drop like coins or or earring or like a ring or something and it's just like it's gone to the abyss. Why am I gonna try to go down and find it and at the time not being K ne user, people be like, What's wrong with this guy? Like, it's right there, you know? speaker-0: Yeah, have you got to try PickyBot yet? Mm-hmm. So Martine is one of our one of our partners for the Echo Vision Foundation. And he really introduced us to PickyBot. And yeah, we love it. And Martine loves loves when he hears that folks are using it. speaker-1: Pixie Bot. That is l so hold up, is it Picky Bar or Pixie Bar? speaker-0: So he said it's picky bot. ⁓ speaker-1: ⁓ so I think ⁓ it's you know I'm speaker-0: He said it was something else actually, but if you listen to back to episode two, I think and but the voiceover calls it Picky Bot, so that's what we go with. speaker-1: Yeah, so I'm blaming on my voiceover. That's not my fault. I'm not ignorant. It's all my voiceover's fault. speaker-0: Interesting. That's really interesting, Martine, if you're listening. It's the voiceovers and and that folks are using around the world are calling it different. That's really quite interesting. So okay, so you're using those every day right now, right? ⁓ I do you use any like other devices? Like are you an AI glasses user? Are you ⁓ have you gotten into any of that yet? speaker-1: I use a list. Like I honestly, even as a young kid and I I'm kinda like being hypocritical to what my story, maybe it was an assistive technology, but I always like like computers and technology. It's not assistive technology back in the day, but I love exploring like new gadgets. Like I love the fact that yeah I have my metas and like get to try them out. I love like I said, Orion, Oko is pretty lit. Yeah, just see different aspects, right? Like even like AI now, like I love incorporating that to assist of ⁓ to having things adapted, right? So yeah, like I just love it all. Like, feed me more, you know? speaker-0: Yeah, yeah. I'm definitely learning how to use it better. ⁓ I just got a pair of AI glasses. I had or I got meta, like meta gen two. I haven't really been able to use them yet because I can't see out of them, which I know that blind folks do use it. That's the reason why, but I still have a little bit of vision, so I'm trying to get my script put in there. So I I just turned that in last week to be able to wait for my script to get in. But I'm hoping that I can try it out more in the next couple of weeks. Well this is really awesome. So is there something like a technology that if you could like redesign a product or make an everyday product to make it more accessible, what do you think you would change or what what is missing from the blind and low vision community? speaker-1: Okay, so y'all let me roll out my receipt list of what we should do. Something I would I would really like is this is just coming to my mind first. I actually bought a gimbal and it's a flow A gimbal. And what's that? So basically you put your phone on it and it's like a selfie stick plus a ⁓ plus a tripod. Okay. And with that it follows you, right? So when you're moving around you're always in frame. Okay. speaker-0: Like it like the top moves or like it rolls around if you're speaker-1: ⁓ So I found ⁓ with it I actually saw it on I don't though shout outs to ⁓ Serena, Blindy Girl. I don't know if she was ever on an episode. But I saw it ⁓ from Blindy Girl and I got it it It is a lot to I don't know, it's a lot to figure out. And I really wish it was just turn on and you're good to go, right? So I almost feel like it would be nice to have something like that. You turn on it on, it follows you around. And the one thing I find when it comes to like technology and gadgets, ⁓ having that understanding from support, technical support, on like, okay, I can't see it. Like they're like, go look at the red button, right? So something like that where you have like a selfie stick gimbal that you turn on, boom, it just it just follows you. You sync it, boom. Another thing that it would be pretty cool, and I think it's out there, but I wish it was more developed, where it would be a cane that like can sort of guide you, right? speaker-0: Yeah. Like almost like an AI cane. I think we've talked a little bit. Yeah. Like almost like Gen two meta AI cane. I don't know. Wouldn't that be awesome? speaker-1: Yeah. That would be amazing. And no one even ⁓ with that said, like they do have I think it's the glide and but the problem is it looks like to me, it looks like one of remember those kids with the pushbackings with the little copper in it? speaker-0: Yep, the little pop Yes, the little bullet popper. speaker-1: Yeah, it looks it just looks too abrasive. People are like, ⁓ look at Ben taking his vacuum cleaner for a walk, you know? speaker-0: Yes, understandable. Yeah. How can we make it more friendly and user friendly and also like not be getting all the looks, right? speaker-1: Right. Yeah. And one more thing actually that I'm like, damn what they should they should figure out? Like going to a store like a a Walmart or a department store and actually having the cart that leads you, like a AI cart, right? That would be amazing. If you want to go to a certain department, it leads you there and then it stops in that department and it stops in front of where you're looking for. You could check it, you could use your other technology to speaker-0: ⁓ that would be cool. speaker-1: To check it, put it in the cut and it just takes you, you know I mean speaker-0: That'd be really cool. I know that they have what something similar for like you can get the robot to door do your DoorDash delivery and stuff. Why can't we do that in the grocery store? Wow. Well, I wanna hear for our listeners as as we're thinking about the next generation. Like what is like one of the most important needs or conversations that are missing in the blind and low vision community today? What is what is something that you would ⁓ like wish more people understood about the blind and lob vision community. speaker-1: Yeah. So I'm gonna say two answers and from two perspectives. So I'm gonna say from the blind low vision community, what I would like to see is even from my community, I'd like to see more patients with the non sighted non ⁓ well not non sighted, but the sighted or people who are not blind or low vision, right? Because something that I am seeing, especially with advocacy, is almost like us versus them, right? Mm-hmm. And ⁓ this person said over there. That's horrendous and not giving people like a chance, right? Like and it's sort of sometimes and I I've done this sometimes, I've done this in the past, where sort of like my blindness is the only issue and no one else has an issue, right? Like so if someone does something like, yo, they should know because it's blind in low vision, but then at the same time you never know what that person's going through. Or exactly the feelings of that other person. Maybe they're nervous. Maybe they don't know what to do. Maybe they haven't came across the amount of times where I talk to people and they're like, I want to just come say hi to you, but I'm I wasn't too sure like should I like they kind of bump you or whatever. So just even to have that patience that you know what? Like people don't know. And it's not necessarily people being malicious or people looking at us as less than, right? Like just to know that okay, we can can build allyship and such. And then on the other side of the coin for the cited community, I would like people to know that we do more. You know what I mean? And and take away those stereotypes and be it's okay to come and chat with a person who's blind or low vision, right? You don't have to feel scared or like you're walking on eggshells and know that they may have Same values and hobbies, just like anybody else, right? So also something I'd like to see is not always having a discussion on everything that's blind and low vision. You could talk to me about sports. You could talk about T B shows. You could talk to me about like what skiing, or I don't ski, but like basketball, like it doesn't always have to be a conversation about my eyes. Yeah. speaker-0: Yes, yes. Well, right before this, what were we both talking about? I literally just said, we're gonna go see the Michael Jackson movie this weekend. Like two blind folks talking about going to the movies to watch the movie. So definitely there's room. We're doing all of the same things that all the cited folks are doing, right? Yeah. Well, Ben, this conversation has been super insightful. Thank you for coming on today and sharing your story with us. Thank you for making space. speaker-1: Yeah, speaker-0: You know, to be able to be vulnerable 'cause it's it's hard to do that and especially to do it on a national platform podcast. So thanks so much. speaker-1: Thank you for having me, Doctor Kinesha. And yeah, hopefully I'm invited again. Yay. speaker-0: Yeah, let's Yeah, we're definitely gonna invite Ben back for some conversation. So Ben, thanks for joining us on the Echo Lens where we view assistive technology through the eyes of lived experience. If today's conversation sparks something in you, you can share it, you can rate it, and keep the dialogue going. To learn more about the beautiful project or to support our work, you can visit Echovision Foundation dot org. Until next time, stay curious, stay connected, and Keep seeing with love. Bye everyone.