Latest / The Eko Lens Podcast / Reimagining Access: Ana on Blindness, AI, and Advocacy
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, Kinesha, and each episode we'll explore how dignity, design, and innovation really intersect to empower blind and low vision communities. We're not just reviewing tech, we're reframing it. This is a space for truth telling, for honoring 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 place. This is the Echo Lens. Let's take a closer look. Hey, everyone. This week we have Anna. And we're so excited to have Anna. Anna is a MD. She is a doctor. Dr. Anna. That's what I'm going to call you, Dr. Anna. She has a master's in health management and is currently a MPH candidate at Johns Hopkins, one of the most esteemed universities that we have here in the US. But we're excited because Anna is one of our premier interns right now, one of our initial initiation interns here at Echo Vision Foundation. And she's brought some really, really awesome ideas and focus to Echo Vision. And we're so excited to have you on the podcast today. speaker-1: Well, it's my pleasure, Kanisha. It's my pleasure to be here and it's my pleasure to be here with the audience as well. speaker-0: Yeah, we're definitely excited to hear a little bit about what we're going to talk about today. First, one of the first things I want to talk about is if you can share just a little bit of your personal journey and your connection to the blind and low vision community. speaker-1: Sure, of course. So, I wasn't born blind. I was fully sighted and I didn't even wear glasses until I was 25 years old. I lost my eyesight suddenly from one day to another. When blind, I woke up blind on December 26, 2020 while dealing with cancer. Right now, I'm a four-time cancer survivor. So yeah, just suddenly with chemotherapy, I... went blind. It was a tumor lysis syndrome specifically, but I woke up one blind one day and ever since I've been fully fully blind. No perception of light. speaker-0: ⁓ And I definitely relate with that. were talking a little bit earlier about if those folks haven't caught my episode, the last episode about my story, very similarly woke up not being able to see, but yours is zero visual or zero light perception, you said. So completely dark. Yeah, and that's huge change in someone's life. Like what were some of the things that you experienced like going through that? speaker-1: corrects that Well, I won't deny that the days after I went blind, when I woke up blind, were one of the most frightening and scary days of my life because I wasn't used to it. Not at all. I was used to be waking up by the light of day and all of a sudden I was greeted every morning by darkness. So that was of course scary, very, very scary. But so what always followed that was course of panic attack because I was not used to that reality. But with time and I started to adjust to that new reality. And nowadays I can't say that that list that you read of all the degrees I have. Well, the masters in health management and the master of public health, which I'm a candidate right now, I both did them while being blind. So despite the challenges that I had, it is something that you can adjust to and it's something that you can live with and something that should not be a barrier. It is something that it can bring adversity, but adversity can be overcome. speaker-0: Yeah, and exactly like you said, you completed these degrees completely blind and were able to still showcase the message that you wanted to get out about the changes that you wanted to make in the particular fields that you're working in, right? So how do you take this motivation that you have, right? This overcoming the adversity and how do you take it and keep motivated to continue to do the work that you're doing? speaker-1: That's a question that could take me the whole podcast but of course we're not gonna do the whole podcast about it. But ⁓ I have a personal leadership motto that is blind courage clear vision. is said that... ⁓ speaker-0: that on my vision board. Do you mind if I quote you on my vision board with that? Because I love that. speaker-1: I don't know, we're gonna talk about it. Maybe not yet, I'll give you the green light when you can. But Helen Keller once said that it's pathetic how men who can see may have no vision. And we, people who are blind, are people who have low vision, may in theory not see that well, but it's different from not actually having vision. I think that being able to have a vision throughout my life and even despite blindness is what has gotten me through all of this. And I think that's what's most important for people to know that they have a purpose and that they have goals and that nothing can stop you from reaching those goals if it's not yourself. You are your biggest barrier. So that is what's most important to understand. It's a fight against yourself. So it's in a way a fight you can win. speaker-0: Absolutely. And you know, you have all of your personal experiences that really shape your thinking, shape your journey that you've gone through over the last, you know, almost six years of experiencing this, right? And with that, because you were sighted and then you woke up not sighted, comes having to learn how to maneuver through all of this new assistive technology space that we've been talking about. on our podcast and what our mission really is for here at Echo Vision Foundation. So do you remember your first experience with assistive technology? What did that look like? speaker-1: Of of course I do. It's again something you can never forget and you will never forget. My first experience as I told you, I woke up blind and I was dealing with cancer. So when I woke up, a lot of things were going through my head and my loss of sight wasn't the only medical condition I had at the time. But I remember that my brother, after I went blind, came into my room, my hospital room and told me a few hours after, of course. that if you could have my phone and I was like yes of course take it I don't need it anymore it's of no use for me and he was like no that's not true and I was like what? and he was like I went on the web and I researched and there's a feature in settings that's called voiceover and I think I know how to tweak it and how to use it and I'm gonna teach you how to click and I was like What? And he was like, yeah. And that's when he introduced to me too, how to click on the voiceover and how to use a rotor. I was way too weak to actually navigate that phone back then in its entirety and to discover all the features that voiceover has. But at least he taught me how to click just in case if I needed to call him. my mom or my dad. And that's the first time I encountered or I greeted for the first time assistive technology. It wasn't a K, it wasn't a white cane because I was staying in bed. But it was with voiceover and that's the first time and from then on, it was mostly me navigating YouTube tutorials to self teach me the skills I have today. for assistive technology mostly. I can't say that it was entirely on my own. No, as you can see, my brother first taught me and I had other experiences and other people helping me. But most of what I know today, I learned through YouTube tutorials. speaker-0: Yeah, YouTube, I've definitely learned a lot of things on YouTube and also TikTok and things of that sort as well, because tell me a little bit about your access to services in your area. And I know that we've talked about this recently in the past couple of weeks, and we ended up resorting to going to YouTube and TikTok because we weren't getting that resource access from our medical providers or whatever it may be or. You were just talking earlier about even the resource access at school, right? That an interesting fact, you can expand on this a little bit too, is that you said, you know, in your MPH program, you're the first blind person to go through it in like 30 years, and they don't know how to make that accessible for everybody, right? So what are some of the things that you're going through in that aspect with learning other assistive technology or looking at technology in a different way? speaker-1: Well, I think it's a learning curve for everybody to the extent of my knowledge and to the extent of the knowledge of one of the professors that is a long standing professor at the school. I am the only blind person to be there in the last at least 35 years. So I think there has been a learning curve for many people. People have been very welcoming and very understanding, but I think that we blind people. have the responsibility to push boundaries of inclusion. That is something that almost everywhere we go, we have to push those barriers of inclusion. And that is actually what makes us, makes our life in a way challenging, but also it makes us pioneers, which is an experience that not everybody has. And that's what I think makes us more resourceful. And that is a skill that we blind people hold over other people that don't have any type of disability because we grow to be resourceful in order to re-enter or enter society or reinsert ourselves in society. So that is a skill. that can be underestimated that we have that I think should not be underestimated because it's quite the skill. And in my country and for Costa Rica, there is, which is another question that you asked, Ganesha. In Costa Rica, we have one Institute to help the blind, to educate the blind. It's called a Helen Keller Institute, but it Virtually offers no assistance to people over 18 years old, pretty much, after you finish high school. I say virtually because the legal framework states that that institute should cover all ages. But in practice, that is not the case. So if you go blind in Costa Rica after you finish high school, You're not going to receive any sort of assistance. You can register in the national council of people with disabilities, but that's just to keep a register and maybe to give you certain stuff as a disabled person. But it's not about education. It's not about training. It's not about presenting you and introducing you to assistive technology. Something that in the United States, I'm not going to say it works perfectly, not at all. But here you at least have lighthouses, which for some people have not been a good experience or not a good experience. But for some people it might. In Costa Rica, we don't even have that option. speaker-0: Yeah. And folks that don't know what a lighthouse is, it's like a place that you can go for like hands-on experience, daily orientation and mobility training. I know folks can, you can go there for a couple of weeks, months. There's all different types of programs and they help with job placement. And we have, we have things similar to that in Michigan too. They're called something a little bit different, but yeah, yeah. And what you're saying is after you're, pretty much out of luck after you're 18 in Costa Rica, which is wild. especially for those who, like ourselves, have lost sight in young adulthood. Hmm. Wow. Well, from a technology perspective, in your lived experience of daily life, what is one assistive tool that really has made a very big, meaningful difference in your life or in work? What's something that is really meaningful to you when it comes to assistive tech? speaker-1: Exactly. I think what I use the most in assistive tech is an iPad with a magic keyboard. That's what I use the most. And the reason behind this being my favorite tool is that it is used in the same way that you use an iPhone. So it takes the same skills, the same training. At the same time, you get the magic keyboard, which is real comfortable. And you can easily use it if you have learned how to type either before or while being blind. So I can type even when I was sighted without even looking at the keyboard. So I still, I still retain that skill. So that's useful. Despite that, despite saying all that I have said. iPads and well, we have mostly iPads but software. updates of the iPads can be really annoying. my case, every time normally there is an iPad software update, your settings of voiceover suddenly reset. And even your voice of voiceover changes, everything resets. So I know that sometimes there's a software update because my iPad usually start speaking with another voice and I'm like, no, there's a software update. And with that software update comes a lot of glitches. For example, the last software update of my iPad glitched it in a way that when I use notes, which is an app, ⁓ Apple, that's why I use it because it's usually more accessible. It is not navigating sentence by sentence or word by word or character by character. It just simply does not let me. navigate at all. just lets me write. So I can't delete the words, but I can't go back to one of the words that I wrote in the middle of a paragraph and correct it. So it is really annoying that it's extremely annoying. it is extremely annoying. So I had to, since I was in the middle of my MPH, I had to force myself into developing more skills in a MacBook in order to face that problem. Because well, who's going to tell the Apple developers that they, their update created a glitch on voiceover. So it was not going to be switched or improved from like in the middle of the night. So well. That's what I was telling you about being resourceful. So I had to grab my MacBook and well, again, back to the same point at the very beginning. There will be adversity, but you just have to overcome it. And that's the philosophy. Just overcoming that adversity and that in a way can make us stronger if we face it in the right way. speaker-0: love this and talking about using these things, I'm still learning how to use some of those things too. And I agree that every time an update is done, it does make things a little bit more difficult. So we stay really deeply connected to community and collective progress with this work too, working with the blind and low vision community. And what do you think right now just from? obviously being a part of the community, but also with the work we've been doing over the past couple of months with the beautiful project and just all the learning y'all have been doing as interns. Like what is some of the most important conversations that need to be had right now in the blind and low vision community? Like what is something that we're not focusing on that we should really be honing in? speaker-1: Well, that's a difficult question. Very difficult question. I think that the blind community should be more represented within the technological world, but more in a higher points or higher hierarchies within the tech world. Because even though We people don't notice it. As I said, at the very beginning, we are really resourceful. And to put an example of what I mean, there's this amazing, completely outstanding blind person whose name is Sanford Greenberg. He went blind in 1961 and he, back then, He was studying in Columbia. had a full scholarship. He went back to Columbia in 1961. It was an analogical world. And he graduated despite all the adversity that you can imagine of being fully blind in 1961. And afterward, he went to Harvard Law School and he faced adversity. a lot of adversity with all the books that he had to read. He couldn't read them at the speed a sighted person could. So he sat down with people that develop softwares and stuff and created the compressed reading, it patents the compressed reading, which is what sighted people use every day when they decide to play speed 1.5, 2.0. speaker-0: ⁓ Yes, on like audio books and even my podcast I listen to at 1.25 at least or 1.3. It's really... Wow, I did not know that. speaker-1: Exactly. Yes, he eventually patented the software and sold it. And it's today what Audible uses. So for the audiobooks and all that stuff, it's the same software. So the one that he created. So that's what I'm telling you, that we can be really resourceful. Sanford Greenberg was extremely resourceful. He's my inspiration as a black person. And so I think the tech world, cutting away. underestimate blind people so I think blind people should be on the higher spheres of technology because we are resourceful. We've learned how to live life without eyes which is something everybody else needs and we don't and that resourcefulness makes us more creative so I think we should be at the higher spheres of technology because I think We could invent stuff that can easily be used by the sighted and a very, very small bridge could actually link it for the blind people. So I think society is underestimating us and is underestimating the creativity that our disability has forced us to have. So I think that's one of the biggest. think so if you're a blind person or a low vision person and you're hearing this podcast. Believe me, if you're just became blind or if you're just beginning to deal with low vision, time will show you that you will become, I'm sure a bit very creative, very resourceful. Well, I'm just going to tell you that and I'm going to let time be my judge, but I'm sure you're going to be smarter. more creative, more resourceful because it's the way you overcome that adversity. speaker-0: Yeah, that's so powerful, Anna. Thank you so much for that. And then, you know, one other thing I'm thinking as we close here, and I would love to hear your hopes for looking forward. What really gives you hope after we're hearing about where we wish we were more involved and, you know, we wish we had access to some of these higher spaces that don't take into account some of the things that we really need to be able to be successful? What gives you hope about future? the future of accessibility or assistive technology. What does give you hope with some of the things that we're seeing right now? speaker-1: I what gives me hope, I'm a believer, as I again said, I'm a believer that the stuff that are built for the sighted are the stuff that are more marketable, that are going to become cheaper. And I think it's that technology that with a small bridge can be of real use for the blind. And my perfect example of that is AI. AI wasn't designed for the blind. It was designed for the sighted. And live videos eventually are going to be for the sighted. But what's the bridge between using that for the sighted and then using that for the blind? Nothing. Just a click on a picture that will probably describe to you better what you see. just because by just clicking on it, it knows that you're blind and it knows it has to describe a little bit more. So I think the secret is always to cling on to what sighted people have because they're a bigger market and that's going to make it cheaper. But with a small tiny bridge, make that accessible for the blind. So AI is of course for me, a big hope. Because sighted people are going to depend on that a lot and are going to want it. So that is going to bring the prices down and that's going to change our world because they were going to want to have live videos just for them to be able to describe what they have and give them more information of what they see and et cetera, et cetera, et cetera. And that process is going to be completely life changing. also think as a medical doctor, as a scientist and having spoken. with Sanford Greenberg, who is the chairman of the Wilmer Institute and is leading the research on ⁓ cure for blindness, different types of cure for blindness, acquired blindness. I think we can dream of a world where blindness is no longer among us in the next 100 years for sure, 50 years I think so, and 30 years maybe, yes maybe. so I think that maybe in our lifetime we could eventually, of course depending on the pathology, people could regain sight and could regain perception of light, which is ultimately amazing and completely mind-blowing. speaker-0: A miracle. speaker-1: We've been dealing with for millenniums. thinking that a possible solution could be out there in the next 30 years, in the next 40 years, in the next 50 years, that's completely mind-blowing. So for now, we have in the near future AI, but maybe in a longer future, we might have perception of light even. So I think that is fascinating and that is a reason to not give up and to keep on being creative and keep on being amazing, amazing blind people and low vision people because believe me, it will make you a little bit smarter. speaker-0: Oh my goodness, I've learned so much from you, Anna, just like today and obviously since you started your internship with us, just like everything you brought to the table, so amazing. And you know, something that stuck out to me that you said is, you know, that we might be able to give back this light perception in the next 30, 40, 50 years. I would say, right, that our... We are looking at that in spaces already. We're seeing some of that work being done with retina transplants or eye transplants or whatever some of those may be that are actually giving folks some of their sight back, which is really interesting. I'm not a candidate for any of that, but for those who are, that's really cool. But I've learned a ton, and I'm super excited to see where your research is going. Anna is really working on some research with us here at the Echo. a vision foundation and our beautiful project and all things tech that we are doing in bridging that gap. we're definitely looking forward to continuing our partnership and work with you, Anna. And thanks for being on the podcast today and sharing your story because, you know, as a fellow blind and low vision person, it's not easy to get out there and share with everyone some vulnerable parts of yourself. speaker-1: Thank you for having me, Kenesha. And of course, we, blind people and low vision people need to stick together. Absolutely. And well, the more the merrier. And it was my pleasure and my honor to be here with you. speaker-0: Thank you, thank you. Well, thanks, Anna, for joining us on the Echo Lens, where we view assistive tech through the eyes of lived experience. if today's conversation sparked something in you, you can share it, rate it, and keep the dialogue going. And to learn more about the beautiful project or to support our work, you can visit ecovisionfoundation.org. And until next time, stay curious, stay connected, and keep seeing with love. Thanks, everyone.