Latest / The Eko Lens Podcast / Retinitis Pigmentosa, Advocacy & Assistive Tech with Zoe
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, Kenisha, and every episode we explore how dignity, design, and innovation really intersect to empower the 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 voices who 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 place. This is the Echo Lens. Let's take a closer look. Hey everyone. Welcome back. This episode we have Zoe. I'm so excited to have Zoe here. Zoe is the vice president of the American Council of the Blind Next Generation in Texas. And I met Zoe through my partner that Pat did some similar work when they worked in foster care advocacy and and Zoe's been doing foster care advocacy s for for eighteen or since she was eighteen, excuse me. And she has a bachelor's in criminal justice. And we connected and I just loved hearing about her story and about the things that she was doing. So I definitely invited her to be on the podcast. So welcome, Zoe. We are excited to have a conversation with you today. speaker-1: Yeah. Thank you so much for having me. Yeah. speaker-0: Yeah, and you're from Texas. It's nice and warm down there. ⁓ speaker-1: ⁓ yeah. It's it's been raining a lot lately, but yeah, it's nice and hot. speaker-0: ⁓ so we can you share a little bit about your connection and your personal journey to the blind and low vision community? speaker-1: Yeah, so I've kind of always known that there was something going on with my eyes, but I didn't get diagnosed until 2020. I have went on a trip to Italy in 2019 with my track coach ⁓ from high school. And she was like, You have some depth perception issues going on. Cause I kept missing steps. ⁓ and then she noticed like it was hard for me to see in places that were kind of like ⁓ not well lit. And so ⁓ we went to the eye doctor together actually and they were like, Yeah, you have retinitis pigmentosa. And at that time I'm like, I don't know what that is. But I was just like, it's not doing anything to where it's affecting me right now. So I kind of blew it off. And then I started to have vision loss, significant vision loss, ⁓ twenty twenty two. speaker-0: Wow. Wow. And, you know, ⁓ for those who might try to be trying to connect the dots a little bit right now to as to why your track coach took you and why it was later in life that you experienced ⁓ getting some of that help with your eyes. ⁓ would you be able to explain that a little bit, Chris? You don't have to go too far in depth, but I think it I think it's important for the advocacy part that that, you know, a lot of retinized pigmentosa folks find out much sooner. Especially if you're realizing that you're having some death perception issues or things like that. And it sounds like there wasn't a lot of regular eye care. speaker-1: Right, yeah. So I ⁓ experienced a foster care system in Texas, ⁓ at age thirteen until I aged out at eighteen. So, you know, those years where we probably could have found out what was going on, the medical system, you know, it it is what it is. And I don't even remember having routine vision care like that. It was like, ⁓ you need glasses, okay, you can see okay, you're good. So That was basically it and I didn't find out until I'm twenty four, twenty three. speaker-0: Yeah, that you are having vision issues. It's really interesting 'cause similarly from the background I grew up in, like a lot of that was with bypassed. You know, schools really focus on vision as far as like the glasses and maybe the hearing, but retinized pigmentosa is embedded into the retina that there's not a lot of looking that goes into that because you ⁓ like the eye doctors they have to have those special cameras to look at the retina and take pictures of them. So yeah, similarly when I found out I was, you know thirty late thirties, I was like, whoa, okay. So I just thought I need to wear glasses all this time, right? So I definitely, definitely understand that. So how did you get connected to the American Council of the Blind in the next gen? speaker-1: Yeah. So ⁓ I went to Chris Cole Rehabilitation Center down in Austin, Texas. after, you know, losing a significant amount of vision to the point where I had to learn a lot of blind skills. And ⁓ I went there for about nine, ten months. And I learned about American Council of the Blind and I went to a conference in Houston in twenty twenty four and it was just such a great opportunity to connect. And meet other people who are blind and low vision. And I joined the Austin Council of the Blind chapter. And I was just like, okay, I can dig this. And I was like, I'm wanna get involved. Like I'm wanna be an advocacy. I've advocated on a foster care level and you know, let's shift gears a little bit and take this to blind and low vision, because you know, I'm seeing some gaps. speaker-0: Yeah, there's definitely gaps. Yes. speaker-1: So I was just like, let's get involved. speaker-0: Yeah, tell me a little bit more about you went to a rehabilitation center for nine to ten months. That's a really long time to be away from like school or your home or your family. Like what what did your days look like there? speaker-1: ⁓ goodness. So it was like eight to five. And you had like four different classes that you're doing, like about an hour and a half to almost two hours each. and you know, you're going over orientation and mobility, and then you're learning daily life skills, whether it's learning how to put bump dots on your stove and washer and dryer, and then another class was Braille. You know, they they teach Braille there as well. And then like there was a like a neglective class that kind of helps you build up your confidence. and then like throughout the whole nine months, you know, you switch to different class in technology where you learn how to l use Jaws. you learn how to use voiceover if you're an iPhone user or I don't know what it is for Android. Sorry, Android people. But ⁓ you know, you learn all these different skills and it was It was definitely interesting, I would say, just like being away from family and adjusting to how different people react. Like there's so many different reactions just with family and strangers and people who are blind in low vision too. They were very like accepting. And it felt good to know that, you know, I'm not alone in this. I really appreciated the camaraderie ⁓ that I got to experience at Chris Cole. speaker-0: Yeah, that sounds amazing. I've I've never experienced going away somewhere for that, just a lot of learning on my own right now that I've been doing. But so for you, because it was so I feel like you w learned so much in sh such a short period of time. What was like your first experience with assistive technology and and what do you rely on? speaker-1: ⁓ I mostly use voiceover and Jaws. I need to start using other technologies that I've had, but like I've had other things, but with me losing more and more vision, I'm needing something and I'm needing different things than I originally got. ⁓ so I need to do like another assessment to see what I need now. Since since my vision has changed. But ⁓ speaker-0: Real thing, vision can change. Yeah. Like you can wake up one day in your vision. Like exactly. Or you slowly change over time. So there's different things to help at different times. I'm still learning like what I need at like whatever day. Okay. speaker-1: I mean 'cause what I needed two years ago, I had way more vision than I do now. And I'm like, yeah, none of these things are gonna work. Like I was using Fusion and the magnifier and I'm like, No, I can barely see one letter at a time now. So, you know, I'm like, mm, I think I need something more audio based now. And learning those things was definitely different and it's still like a challenge now that I'm back in school, I'm getting my masters in clinical mental health counseling. Thank you. Learning how to advocate and ask for different accommodations is another piece to being a blind and low vision person that I don't think is emphasized a lot as well. speaker-0: Congratulations. Could you give the listeners a couple of ideas of some of the accommodations that you've asked for for school? Because I think that that's something that's glossed over a lot. ⁓ and not even necessarily like like you said, like high school or but but like college, you're in grad school. Like what accommodations are you getting for your vision? speaker-1: Yes. So I get extended time on my papers just because it takes so much more time figuring out if Jaws can read this source, read this book, and it's it's craziness. It takes a little bit more time reading the different sources that I have to have for my papers. And I have to have like eight to ten different sources. And so that's one thing. I work a lot heavily with the writing center just because Of the type of format that I have to write in is APA seven. I was given, you know, JAWS commands to go and make sure that it's formatted and edited correctly. But there's still kind of some areas where you can't really tell if there's a gap here, if there's a space here. ⁓ speaker-0: Yeah, yeah. speaker-1: In extra period. It's capitalized. All the things. So I definitely have to spend a lot of time with the writing center and, you know, explaining. I like to just stick to one tutor because having multiple tutors and explaining to them, like, hey, this is what I need, it can be a lot. And I'm just like, okay, if I have one tutor who gets what I'm asking for, that helps. Working collaborative collaboratively with The library and the disability services is something I strongly recommend. As well as like having audio descriptions for videos, even being a bit more specific on exactly what is needed for assignments. Like I know that like my screen reader was jumping over certain instructions. Like it wasn't capturing all the instructions. So I had to have my professor like write out a full description of what was actually being asked. So it's it's kind of like you have to play with it a little bit to figure out what exactly you need. ⁓ 'cause I use Canvas as my student portal. And so it's kind of like figuring out, okay, is it is your screen reader jumping over this? Is it is it reading this? Is it capturing this? You kind of gotta work with it. You gotta work with it. But that's kind of like some of the things that I've had to ask for accommodations for. speaker-0: Well, that's stuff that a lot of folks take for granted, right? Like so if there was like a tool or technology that existed, especially with school and the work that you're doing, the advocacy work, like what tool or tech do you think like you would want or something that you wish worked better? speaker-1: I don't know if this exists and it probably does, and I just don't know about it. But I wish that there was like some type of assistant I can have to go through and get all of the assignments and like put reminders for these assignments and when I need to do them and how much time I need per assignment. ⁓ my goodness. Like an organizer type thing that's accessible. speaker-0: Yeah, it's ri that's accessible, right? Because there are some things out there like that, like ⁓ like Monday dot com and I know there's ⁓ some other ones that I've looked into, but they are not accessible for blind and low vision folks. So if like AI could combine with something like that, if there's some amazing developers out there that wouldn't work wouldn't want to work on that, let us know because that would be a huge, a huge life changer, right? Like if we could get something like that. speaker-1: Mm-hmm. speaker-0: So like what gives you hope about the future of accessibility or accessi ⁓ assistive technology? Do you do you see things that or or or are you still in that like learning phase? What do you think? speaker-1: I'm still in learning phase, but what does give me hope is being in the next generation of ACB and seeing other people who are around my age. Cause a lot of times, you know, there's a lot of older folks in the community. In the blind note. But there are people, right. And, you know, there's more people around my age, and they're on fire. They're like, you're going through that. I use this to help with this, this, and that. And we're really like being creative about different ways that we can help each other and make things better for ourselves and for those who are experiencing blindness. And so that kind of gives me hope. And how like unselfish we are. Like I haven't come across anybody who's just like, no, I'm not gonna help you or no, we don't want to collaborate. Like everyone's kind of just Yeah. You know, like everyone's like, we know what you're dealing with. Let's try to figure it out the best way we can. And I really appreciate the heart that's within the community. speaker-0: Yeah, tell us a little bit more about that part of the American B ⁓ the is it the American Blind Council, correct? Tell us a little bit more about the work that y'all are doing because I got ⁓ I was fortunate enough to hop on a meeting with y'all like last week. And it was really cool to hear about some of the things that y'all were doing, the lobbying, some of the the legislator work and stuff. I yeah, I'd I think listeners would love to hear a little bit more about what what is your group doing right now. In terms of of advocacy work. speaker-1: Yes, so there's a lot of things that's happening. There's ⁓ fabricating on section five ⁓ four. I'm not doing it personally, so I don't have all the details of what's actually happening, but we are working on that on a state level and collaborating with other coalitions, ⁓ on a national level to combat that and what's going on with that. We are just like pushing for more funding. We're holding conferences, in September and in July actually. there's a few things going on. speaker-0: Don't don't forget about us. Invite us. We wanna come. speaker-1: Absolutely, absolutely. But yeah, there's a lot of like networking and fellowship that we really push for. And I know like there's a thing called the DC Leadership Conference that our president and one of the directors just came from back in March. And I believe that happens every year. So that you that's another part of advocacy. And ⁓ we have some some mighty hitters on our team. I'm not gonna lie. Shout out to Anthony Chase. Just a gentleman. speaker-0: ⁓ yeah. I had a conversation with them and I was like, You definitely need to come on and talk about all the legislative work that you're on because it is awesome. speaker-1: He's very involved and ⁓ he wants to come on the podcast and so Yeah, let's do But yeah, like we're we're we have some ideas, you know, to push more, ⁓ and get more people involved and and you know, bring more awareness to the table. So Yeah. Yeah. Keep your eyes open. speaker-0: On our episode with Zoe, it looks like unfortunately the last couple of minutes cut out. And in that conversation, we were talking about her partnership and how helpful her partner is. And she was talking about the message she wanted to leave with the audience about, you know, leaning into yourself and growing and learning and trusting in all of that. Like letting go of the things that you you can't control, right? So I resonate with that so much. And Zoe's work and the work that she's doing with the state of Texas and, you know, the advocacy work that they're doing for blind, low vision folks is is so, so impactful. So I wanted to come back and make sure that we we were able to wrap up that conversation because it looks like some of it got cut off a little bit. So Thank you for joining us on the Echo Lens, where we view assistive technology through the eyes of lived experience. And if today's conversation sparks something in you, you can share it, rate it, and keep the dialogue going. To learn more about the beautiful project or to support our work, you can visit us at echovisionfoundation.org. Until next time, stay curious, stay connected, and keep seeing with love.