Latest / The Eko Lens Podcast / Navigating Vision Loss: Kenisha's Story
Transcript
- speaker-0: Welcome to the EchoLens, the podcast where we view assistive technology through the eyes of lived experience. the chair of the Ecovision Foundation Board and guest host for the day, Yorgos. And each week we explore how dignity, design, and innovation 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 the voices that often go unheard, and for challenging the industry to do better. Wherever you're a developer, a user, or someone who simply believes in equity, you're in the right place. This is the ECHOlands. Let's take a closer look. Today, we have something different in store for you. Kenisha, who is our usual host, will be sharing her story with us. Kenisha serves as the Director of Community Engagement for ECHO Vision Foundation, where she leads strategic partnerships, ad hoc casi initiatives, and inclusive programming to advance accessibility and empowerment for individuals who are blind or visually impaired. She represents from the state of Michigan, where connection to this work is both professionally and deeply personal. She began to experience significant and permanent vision loss, which most recently has ultimately led to legal blindness and extreme low vision. Navigating her new normal has transformed how she experiences the world and strengthened her commitment to advocacy, accessibility, and community engagement. Beyond her work at Ecovision Foundation, Kenesha is a nationally recognized DEI leader with more than 15 years of experience. Kenisha has guided government agencies, nonprofits, and organizations through cultural transformation, leadership development, and equity-centered change. She is the founder of Kenisha Kuhn Consulting, author of the acclaimed memoir, And Then She Persisted, and the PhD candidate whose research explores evidence-based coaching and cultural responsiveness in child welfare and human services. Through her work with Echo Vision Foundation, Kinesha continues her lifelong mission to build inclusive communities where every voice is seen, heard, and valued, while championing accessibility, belonging, and systemic advocacy for all. Welcome, Kinesha. Excited to have you on the other side of the lens today. speaker-1: I know, I'm so used to being the host. I'm like, okay, I will not be the one in charge today. You're going to run the show. And I'm excited for that. And we're excited to get like a little bit of a different view from y'all today. speaker-0: Yeah, absolutely. And I mean, just spout it off. I just listed off a very impressive resume, very impressive schedule, but I feel like it all started with a bit of a more personal story. So could you share with us your personal connection to the blinds and visually impaired community and how it's led you to where you are today? speaker-1: Yeah. So it's really interesting because it sort of came out of nowhere. I've always had vision issues. I started wearing glasses when I was 10. And I remember like every year having to get new ones and that I was told it was like a stigmatism and nothing too wild. But also I never went to an actual, I don't know, like optometrist or ophthalmologist outside of like Pearl Vision or America's Best, know, those car wash type of ⁓ eye doctors, I say, because they get you in and they get you out. So a couple of years ago, I was laying down and I was like watching TV and I like closed my left eye and I was like, huh, like that's weird. Some of this is like blurred out a little bit. I just thought, okay, well, it's time to make. appointment to get some new glasses and I ended up going to the ⁓ optometrist or ophthalmologist excuse me they are different I think it's the number of schooling and how in depth they can get with the testing and stuff but ⁓ I went and he was running all these tests and I was failing all of the the vision field tests where you have to like click the button for your peripheral And I kept failing everything and they're like, you know, we want to take a deeper look at your retina. So they had this special camera there and they took a picture of my retina and he was like instantly very, very concerned. He said, like your retina is. The one side, we could see the healthy cells, but on my right side, there was no healthy cells really. It was very, you could see the prominent dead cell or vision loss. So he recommended that I went to a retina specialist and I started my journey at the retina specialist in 2024. And through them, I found out At first we thought that I had retinitis pigmentosa, which is a disease that takes your outer vision, your night vision, and then slowly, maybe eventually your central vision. And because I am experiencing that, I have no peripheral on my right side, and then on my left side, I have a little bit of peripheral left. So it was similarly ⁓ mimicking retinitis pigmentosa, but... to find out if you have that for sure, you have to take genetic testing. So I was able to do some genetic testing and it came out that I didn't have retinitis pigmentosa, but I had a couple variants that led to degenerative ⁓ retinal diseases. So we did days and days of more tests and they did a test where they, it's sort quite traumatizing actually where they numb your eyes and connect electrodes to like your eyeball. speaker-0: That sounds, yeah. It was. speaker-1: It was something like out of clockwork orange. It was very eerie. And from that, they were able to find out that some rods and cones weren't working like they're supposed to and came up with the ⁓ diagnosis of Azor, which is acute zonal ⁓ outer retinopathy disorder. And less than a thousand people in the world have it. There's not a lot of research on it. There's not a lot of trials on it. There's no information about medication that works or anything like that. So the last couple of years has just been really trial and error as my vision has slowly gone downhill. And this past September, I experienced an extreme vision loss out of nowhere. I woke up and I couldn't see. Everything was extremely blurry. I couldn't put anything into vision. into, ⁓ into my sight, the light was atrocious, all of those things. So I went to the ER and after being in the ER for a night and then following up with more doctors and things of that sort, we still don't know what caused the vision loss out of nowhere, but it can happen again, but I won't regain that vision. So right now I'm pretty much central, a little bit of central vision on my right side and then my left side is extremely blurry. ⁓ So it's been a new ⁓ struggle to learn what that means. On top of all the work that you said, I also do a lot of, I do some tech work too. And it's hard to do things on the computer and keep up sometimes because I can't read as fast. So I've been looking into some new assistive technology to be able to try out and learn, but there's a huge learning curve with speaker-0: Yeah, and that is interesting that you're mentioning this. you have definitely seeked out and sought yourself to kind of find tools that would help you deal with the new normal and experience that. So can you talk to us more about that kind of experience, that initial experience with assistive technology? How did that shape your perspective and kind of both how it helped as well as what kind of you've started identifying as maybe gaps to what this technology provides? speaker-1: So it's it's interesting because I'm still at maybe the more beginning of the realm of advocating to get these These services in place to get help with the resources like using jaws or fusion for your computer that does screen reading or magnification also like Mag digital magnifiers to take with you if you're going out in public. I really want to try you know AI glasses, but the The folks that I'm working with to get some of that cleared and get the training for it, it's just a very long process. So I haven't got to try out a lot of things outside of ⁓ learning a couple of features on my computer about magnification, learning how to use voiceover. And I guess the biggest thing I've really learned is learning to use my cane. when, when I really need it. And I know that we've had some other guests on here who have said the same thing, like learning how to do use their white cane really gives them a little bit more freedom. So I can't drive at all right now. ⁓ I'm supposed to get these like special glasses to be able to drive, but they take a really long time to make and ⁓ they might work and they might not work. So a lot of things are trial and error right now. And a lot of unknown and it's. speaker-0: It can definitely be scary, especially as you said, when you have that unknown and you're not certain of, you lack that certainty that you've gotten so used to suddenly things seem a lot more daunting. And you said that even with, I mean, you're being unable to drive now that can feel like you're being robbed of your autonomy, your independence, but having access to those kinds of tools, you were able to get that back. So that's definitely something that's both wonderful, incredible, and speaks volumes to the amount of effort that you're putting into and not to the effort, but to the amount of work that you're putting into and how you're able to keep up with the rest of us. speaker-1: Like you said, but definitely advocating for yourself is a true thing. ⁓ I called places and places and applied at different things and wasn't hearing back from anyone until I finally heard back from this program here through the state that was helpful. I mean, they're great, to be honest. There's a couple of things there. I gotta push forward to really advocate for myself, but I'll continue to do that and knowing that I have access to that. Now, it's been interesting because on top of all of this, this year and this big vision loss is I went through like a big family change too. ⁓ my ex-husband and I were divorced and I'm living on my own for the first time ever in my life, because I was married very, very young. So now navigating life with the new lens without all of the support that you used to have is a little bit extra. And then also navigating how to be a parent, because I have two children. So how on the weeks that they're here, how am I making sure that all of their needs are met? You know, I ask for lots of help from them. Can you help me read this label? Can you, you know, I would love. to read a bedtime story to you, but right now my seven-year-old is very much into learning how to read, right? So I'm like, okay, can you read to me? ⁓ So just things like that and trying to navigate a lot of those new changes. speaker-0: It seems like, mean, you know, out of the hardness that comes out of it, there's also opportunities for bonding with your children and having them be included and into helping, you know, helping each other, understanding a little bit more how the world works. speaker-1: Yeah, yeah. And I have an incredibly supportive partner who has, you know, will take time out of their, you know, planned week and come and drive me to Trader Joe's. So if Trader Joe's doesn't do like Instacart, usually that's what I rely on are things like Instacart or Uber or Lyft. So, you know, I don't take those. moments for granted of being able to just hop in the car and go to Trader Joe's when you need to go to Trader Joe's. So that has been some new some new movement to for learning of, know, it's okay to ask for help because I am been so independent for so many years that I am not a person that openly asked for help. I'll just keep doing it until I'm burnt out probably. But yeah, I'm not that person who continuously will like ask for help, but I'm learning to lean out on my village a little bit more with that. ⁓ And, you know, even days where I feel like I'm off and I'm having a bad vision day or whatever it may be, you know, I know that I can text Christine and be like, hey, today is not a great day. I can't see that well. And she understands it. Right. So. because she has similar symptoms that we talked about on previous podcasts. just, it is nice to be in an environment. speaker-0: So, and you mentioned that earlier about moments we take for granted, like even, you know, being able to drive or, you know, going to Trader Joe's and using an app like Instacart. What other moments that, you know, we usually take for granted suddenly become more of a task for the, would require you to either, you know, lean into the people around you or even lean into assistive tools that you have and you're using in order to get by on the day-to-day life. speaker-1: Yeah. ⁓ Well, it's recent, a recent one. I navigated to the grocery store, because there is a grocery store sort of close to my house. I never came to the grocery store for the first time. But once I got there, I was really overwhelmed with everything because the fluorescent lights just take things to a different level. And I tried to read some labels down the aisle and it was not, it was like too bright, but not bright enough. I know that sounds interesting, but. ⁓ It was just really hard to read all the things and that that's something that I I think you know I take I've taken for granted like being able to go into the store and just go and Look and see and grab what you need It was a little bit harder and then when I got to the checkout there wasn't a regular checkout open there was only self checkout checkouts hard because I can't see so So just like some of those things I think about ⁓ I do know that I have a privilege because I do still have usable sight, right? And coming from a sighted world and learning this brand new ⁓ navigation of change is, you know, I do, I know that I have a little privilege of that. I'm comfortable walking around my apartment complex and I could do it probably not seeing very well because I'm so used to it. I'm very used to my apartment, things like that. ⁓ New and unfamiliar things is really hard. speaker-0: And again, your story is fascinating. I really ⁓ appreciate you opening up like this. guess another question I would ask about this is have you found a new community through this process or through this trial? Have you reached out and found a more general line of low vision community and have you leaned into that community and have you shared with them and learned anything from them both in how to navigate the daily world as well as engage with this new and ⁓ new unknowns as well as maybe find out about more tools or more ideas and how you can more effectively ⁓ be active in those situations. speaker-1: I definitely think that Echo Lens and Echo Vision Foundation has really given me a space to have a lot more of that connection, right, with the people that I talk to. And I always say that I found Christine at just the perfect moment because I was like, I don't know what to do. I'm just out here trying to look for resources. I would love to do advocacy work, but maybe not quite yet, which that changed, but. ⁓ not quite yet. Cause I was like, okay, I need to learn a little bit more about what this is and how I'm going to function and things of that sort. So when I found Christine and we had our first conversation and she was like, you know, I'd really love you to, to come on board and, and, you know, do the podcast and, you know, have conversations with other community leaders and things of that sort. said, well, absolutely. I'm not going to turn down advocacy work. Right? Because we always want to be getting voices out there, giving lived experience out there so we can spread the message that, you know, this, this is so important. And sometimes a lot of things that get, I don't know, not as much as attention because folks don't assume, folks assume that you are a seeing person, maybe just from, you know, a general stereotypical of looking at you. Right? Even my seven year old has said, mom, you don't look blind. And I'm like, I know, well, we don't. It's different how things work. Like my eyes don't work the best, right? So definitely have found people here ⁓ and then connected with a couple of folks just through ⁓ Facebook groups and like following people on YouTube and TikTok. I've definitely connected ⁓ in person. Probably not as much because I don't think I know any folks around me locally that are going through similar things, but it is something that I've ⁓ wanted to look into. Now, with my disorder even, it's even more rare. you know, I have posted my story on social media, on Instagram, and I've had folks from... I think I had a gentleman from Amsterdam that reached out and he's like, ⁓ my gosh, I just found out I have this and you know, doing all this research and not very many people have it, but you're one of the few who is shared. And so I try to stay in contact with some of those folks because I want to know like, well, how's it going for you or are you doing any special medication or trials or anything like that that's helping? So it's a very small community in the Azore community. but I'm noticing it's also a small community in the blind and low vision community. speaker-0: And as you mentioned earlier, you suddenly found yourself into the position to not just only look out and find other people, but you also find yourself in the position to advocate for those people and to create a bigger space and to create an active space for this kind of discussion to happen. And that takes me a little bit to the next kind of questions I want to ask. And I would like to learn more about what, you know, what, what is kind of your role in the foundation and kind of what your You know, usual activities are like, kind of people do you engage in and what's your visions and goals for the future? Like, what are you looking to get out of it? speaker-1: You know, Christine has such an amazing vision for the foundation and my overall goal is just really to support help helping her bring her overall vision to reality, right? ⁓ but Like on my end, so I'm the director of community engagement So my job is to you know, when we when we reach out to folks I can introduce us as who we are, give a little bit about our background. And then, you know, we're recruiting for funding or partnership for the podcast or whatever it may be. So I like to have some of those initial conversations and then I pass them on along to Christine to have some of those more in depth. Alongside that, of course, hosting and doing everything for the podcast has been really fun and doing some of our social media stuff. And then, You know, I can't really wait to get into some things around the beautiful project. So, you know, if you are listening to this and you are interested in being one of our testers for our project that we'll be starting, you can go to our website and sign up to volunteer there. But I think it's going to be really cool to start getting some feedback from others on. on the technology that we're working with and what we want to report out on. So I'm excited to try some new things. then, I know eventually down the line, I am finishing my current PhD right now, but I would love to do a postdoc study in this realm that we can really work together in doing. what that looks like, it might look like quantitative. I love quantitative over qualitative. It's just my jam. So maybe like a quantitative study on the outcomes of this beautiful project. And we've talked about that too, right? So there's so many different things that we can do, but our main vision is that we want to bridge that gap between ⁓ folks and technology that in the blind and low vision community that hasn't really been bridged in the way that we are going to do it. ⁓ So, you know, I'm open to what we have coming our way. And I think that, you know, visions change as times go on. But I think that the overall context of what ECHO Vision Foundation is doing is going to be very, very, very ⁓ positive in the blind and low vision community. speaker-0: And anything exciting or anything that you're looking forward to do in 2026 in the upcoming year? speaker-1: Well, I'm hoping to get to you know, we want to do some work in DC, but also like, you know, we want to have our proper get together of all of us. And, you know, maybe that looks like strategic planning or whatever that might look like. But ⁓ I think that when we launched the Beautiful Project, things are going to take off a little bit and, you know, that... that I'm just excited to see where next year goes. And I hope that the things that I am learning on my end from the assistive technology space, from the people that we've been interviewing, from all of our resources that will help me do that work better too. speaker-0: also very excited myself and I can't just wait for the whole team to be together in person because again, it's easy and comfortable, you know, in the virtual world right now for all of us to connect, even though you're halfway across the country, but still very excited to, to, to all of us to be together in person and have maybe another version of this podcast in the future, but from the same room. speaker-1: Love a live one. speaker-0: Awesome. Well, I think that's the last of my questions. Anything else you would like to add before we close out on today's episode? speaker-1: Yeah, thanks so much for letting us flip the script a little bit and share a little bit about myself. Just knowing ⁓ that that part of the story really connects on why I want to continue to have these conversations with folks and why I keep inviting people to the table and why we think it's so important to keep talking about blind and low vision community and the lack of accessible resources that we have. that we're learning and finding and how we want to help bridge that gap. you know, ⁓ we're going to keep going. We're going to keep building and supporting Christine and ⁓ the amazing ⁓ journey and vision that she has for Echo Vision Foundation. And I'm excited about that. speaker-0: excited to and it's, Christina has really done a very good job at just finding and bringing all of us together and Kanisha, it's such a pleasure to be able to talk to you and also hear from your voice, sharing both, you know, your personal experience, tying it to this mission and seeing and being very, and I'm very excited to see what's to come in the future from, from this team here. speaker-1: Yes, thanks, Yorgos. We are excited too. speaker-0: Thank you too, Ganesha. Thanks 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, share it, rate it, and keep the dialogue going. To learn more about the beautiful project or support our work, visit ECHOvisionFoundation.org. Until next time, stay curious, stay connected, and keep seeing with love. I did it.