My Heart is Not Blind
Photographer Michael Nye chats with us about his latest art exhibit, "My Heart is Not Blind," a collection of photos and audio interviews of people with visual impairment. Through these stories, Michael provides a look into what he calls "our shared humanity and shared fragility," as well as common misunderstandings about blindness.
Hadley Presents
My Heart Is Not Blind
Presented by Ricky Enger
Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, guest Michael Nye joins us to discuss his photography and audio exhibition, My Heart is Not Blind. Welcome to the show, Michael.
Michael Nye: Thank you, Ricky. Thank you for inviting me on your podcast.
Ricky Enger: So great to have you. So great to learn about what you do which is really, really fascinating. And I have to admit that I didn't know until recently. And so, once I found out, I'm really excited to share that with our audience as well, because you've done some amazing things. So, before we talk about one specific project that you've done, why don't you just give a brief intro? Tell us a bit about yourself, who you are, what you do?
Michael Nye: For the last 40 years, I've been really interested in philosophy. I've been interested in photography. I've been interested in the nature of storytelling and how powerful that can be. How stories are the threads that bind us together. I think all of my projects have been about wanting to know more. A desire to understand communities, people, places, ideas unlike my own. And with photography, I went into wars by myself. I went into Siberia over the Bering Strait in the middle of a winter and live with Chichi natives and Russian soldiers, refugee camps in the Middle East, Palestinian refugee camps.
I put my finger on a map in China and went there for a month back in the early 90's. So, a lots of projects and I use this old box cameras called Deardorff. It's an 8x10 view camera. And it's the kind that Mathew Brady used during the civil war. It's like, it has an accordion to it. There's no batteries, nothing moves, and you use film plates. And so, if I go out photographing for an example, I may have 12 sheets of film and that's it for that day. So, you have to be careful, and you have to think about what you're doing. I think every person, every place is a map to somewhere else. We're all connected.
Ricky Enger: I think that philosophy really does show through in your work, and you've tackled a really wide variety of subjects and many of which people would shy away from really approaching. So, you've done things on hunger. You've done things on mental illness, teen pregnancy, just to name a few. You have done the project that we're here to talk about today, which is My Heart is Not Blind. And just having people who are blind or low vision, share their stories. And you've made an exhibition out of that. What was the reason for your choosing this project in particular? What inspired you to do that?
Michael Nye: This project is two things. It's a book that's published by Trinity University Press and it came out when the show first opened and it's also a traveling exhibition. It opened at the Witte Museum in San Antonio. It's a huge museum and over 20,000 people went in. And so, you can imagine there's 50 large black and white portraits, silver printed in a dark room. And next to each portrait is an audio box with headphones. And so, anyone in the community going into the museum and put on the headphones and that person is speaking in their own voice about their life, not just about blindness or visual impairment, but about all the things that we all have in common.
I think the project, now looking back, is totally about understanding. It's about the nature and ambiguity of blindness, about the nature of perception, which is such a mystery. Major part of the exhibit, it's about human adaptation. For anyone blind or sighted about the brain's ability to rewire itself, to favor nonvisual thinking. It's about our shared humanity, our shared fragility, what we have in common. I love working slowly on a project and working with that person. And each person had a ability to make sure they approved everything that I did, both the text and the audio. Gosh, I met so many friends and what a privilege it was to be a listener, to listen and learn from someone else.
Ricky Enger: Yeah. And I think it's so incredibly important that you allowed them to not only tell their stories, but to make sure that those stories really were represented in a way that was comfortable for them. And that met what you had set out to do as well. And so, it was such a collaborative project. Did you go into this with something in mind and you had a vision as to how this would all play out in the story that you wanted to tell, and maybe you had some preconceptions before you got started? Did any of those things... Were things a lot different than you expected or were some things reinforced what you actually already felt, or maybe a combination of both?
Michael Nye: Yes, to everything you said. Backing up just a moment, almost 30 years ago, I was invited on Arts America Tour in Southeast Asia to exhibit photographs and to give the talk about photography and aesthetics. And this curator in Riyadh, the capital of Saudi Arabia said, "Would you give a gallery talk to some international blind students?" I didn't think anything about it, but what I remember, and I will never forget was their attention, their gaze, their intense listening, their curiosity, a whisper seemed like it would travel far.
And I remember talking about how light is different in the morning versus the evenings, how it changes. I talked about that black and white photograph can be aesthetically beautiful, the way it's black and grays and whites are arranged. And then they started asking me questions and they were really fundamental questions, profound, simple, philosophical questions. "Why are you a photographer? What's black and white? What's a beautiful, it's nonvisual? What's the meaning of these photographs? The photographs represent reality. How does anyone blind or sighted or visually impaired, understand the world outside themselves?"
And I think at that very moment, we switched places. They were given the gallery talk and I was a student listening and learning from them. This reminded me of Immanuel Kant, the philosopher, 18th century that has four fundamental questions. "What they were doing? What did we do in our lives? What can we know? What's the limits and extent of knowledge? What do we all have in common? And what can we expect from the future?" And that's exactly what they were asking. When I came back to San Antonio, this was some 30 years ago. I came back to San Antonio. I brought six people that were visually impaired or blind and then six artists together, no one teaching anyone anything. Just to talk about perception. Perceptions, not vision. Perception is everything, awareness, metaphor, intuition.
And we went around the room and everyone came away with a larger vocabulary. Everyone just was so moved by listening to other people's experience. So, I just said someday, I would like to spend a lot of time listening to people around this country that have some vision loss or blindness. I was interested what I could learn from them. So, I wasn't trying to do anything except have the fidelity to each person's experience to try to be true in the sense of what I'm editing and putting forth. And that's why I worked closely with each individual. So, I didn't have any preconceptions other than I just thought it would be incredible to have these deep and meaningful conversations.
Ricky Enger: That is so awesome. Because if you go into tell a story, you're already shaping it, right? You already have something in mind that you want to tell and you're using a narrative to fit that. And so, I love that you went in to learn and in the process of doing that, you just happened to allow people to tell their stories and it was shaped into what you have now for this exhibition. When you worked with people, how did you decide who to approach and what was their general feeling about being involved in this? And since it is such a collaborative thing, I would imagine that you changed yourself and they probably did as well. Just in the journey of creating this. Can you talk a little about that?
Michael Nye: It had one criteria. I wasn't looking for success stories, failure stories, tragic stories, happy stories. My only criteria was, "Would you spend three days with me?" But it surprised me on how many different causes of vision loss that people... I mean, I never recognized…that there was almost 50 people in the exhibit, and I probably had 24 different varieties of vision loss or blindness. My questions were about blindness and visual impairment but it's also about being a human being, what's your family's history? What are you thinking about? What do you hope for?
And I think people that participated saw the seriousness and really jumped in and used their voice in a courageous, vulnerable way, which is not that easy all the time. But I think is if you spend two days, three days, four days, sometimes I spend a week with someone, it changes, it changes the way the questions, it changes to listening. Question and answers a dialectical process. You don't know where it's going when you start, it's going to end up somewhere very far from where you started.
Ricky Enger: Absolutely. And so, when all of this was done and it certainly did not happen overnight, but when you created this, you have a book, you have a traveling exhibition which I'm certainly curious about how that works, and we'll get to that a bit later. In any case, you have a lot of these people experiencing the work that you've put together, some of them are sighted and they've never thought about a blind person before beyond just the word blind and what that might mean. Some of them are friends and family of blind or low vision people, and some of them are blind or low vision themselves. And so, I'm fascinated to know in as much as you've been able to observe this, how were people's reactions different just depending on the perspective that they were experiencing this from?
Michael Nye: Well, several answers to that. One is, from a sighted point of view, I've worked on a project on young parents, ages 12 to 100, everyone, men, and women. And that exhibit's probably gone to over a hundred cities. Then I did a project on mental illness, four years on that project. And it's gone to over 60 cities, then went on hunger in America, which is not about poverty, but hunger, someone could have been hunger as a child, but not as an adult, that's gone over 50 cities. This is the fourth big project. And I think this project there's more discrimination, more misunderstanding. I never thought that was possible. When I took the book to Trinity University Press, great press, but they have a group of readers. They give their opinion about the book and they're usually PhDs, highly educated. And this is what they said, Ricky.
One person said, "I found these narratives from the blind and visually impaired to be so articulate. I questioned whether these stories are really the sentences spoke by the blind participants." And then another one was, "Would each of these participants recognize these words as something they actually said?" And so, your question about the misunderstanding is profound that someone visual, if they imagine themselves blind, of course at that moment, they're not going to be able to do all the things they're doing, but they're not looking at adaptation. How the brain that you can learn all these things, you can live a perfectly normal life, an extraordinary life or whatever life you want. If you learn the skills, if you adapt, it takes time. It's hard.
I interviewed Michael Hingson, he was on the 78th floor of tower one when the first plane struck, and he knew exactly how many steps from the 78th floor to the lobby. Probably most people that are blind wouldn't know that, but he did. But he says the biggest problem, and almost everyone I interviewed in one way or the other said, "It's not blindness. Maybe it is but it's also what sighted people think about blindness. They just don't get we can adapt." A lot of people that are blind are very visual. I mean, you don't lose your visual memory if you were sighted as a child, and they visualize everything they do. So, everyone is so different. Being blind as a child is so different than being blind at 70, or being blind in a second, car wreck, aneurysm is different than having retinitis pigmentosa or cone-rod dystrophy or whatever.
And having parents or family that supports you is so different than if you don't have that. And visual impairment is like you're between these two worlds of not completely blind, but not completely sighted. So, it's a big issue on discrimination. That's a big one and that's a hard one. And it's a fight that I'm in whenever I speak to groups or have my exhibits, because I always give lectures. I hit that one as hard as I can because it's a lot of ignorance.
When the exhibit was opening at the Witte Museum, I was at another gallery opening and this woman said, "Michael, what are you working on?" I said, "I'm working on a project on blindness, visual impairment, about adaptation, perception, mostly about perception." And the woman said, "I'd rather kill myself than go blind." She said that without a hesitation and without any kind of reflection about it. And I think in all the interviews that I've done, I asked maybe one question, probably the only question I asked everyone, what is blindness not? But some of the answers I got, "It's not akin to death. It's not like being buried alive. It's not blackness or darkness forever. It's not fear, doesn't break you. It's not a life of misery. It's not the end of the world or the end of one's life. It doesn't define me. A characteristic but doesn't define me. It's not the last act. It's not a door that's locked." That list can go on for 25 pages, but it is about what we have in common and about possibilities and about the change and attention and it's about justice. It's about fairness and it's about a lot of those things, I think.
Ricky Enger: And I think that is really, really well portrayed in what you've done. It's because you did talk to so many people who shared their experiences and you put those together in a way that I hope will be educational for people because it was very powerful for me, even as a blind person, just listening to my own community, tell its story, knowing that there would be people out there who had a number of misconceptions about blindness. And our hope certainly is that experiencing this exhibition in whatever way that they can, can address some of those things and really break through that narrow mindset. Speaking of experiencing the exhibition, how can people do that? Because you've talked about a book, you've talked about... It has traveled to multiple cities, and I would suspect that the pandemic has changed a little bit in that respect. I know that there are parts of it available on the website. So just talk about how people can then go and find what you've done and check out this and other projects.
Michael Nye: The audio exhibition, the traveling exhibition stopped with COVID. So, it'll start up again, but there's no place right now where all the stories are available. The book's available, but I will hope to have all the audio stories available at some point. It's so different listening to someone talk about their own lives versus reading about someone's life. They both have a strength and a weakness to it. For an example, just come to mind. I interviewed; do you know Olivia Chavez from El Paso?
Ricky Enger: I don't, but I did hear just a brief bit of her story from your site.
Michael Nye: So those are all excerpts on my website but one thing she said, "My mother tells me shortly after I came home from the hospital and my eyes were bandaged, my mother never hid me. She would take me to the store and people would ask, "What's wrong with your daughter? Why are her eyes bandages? What happened?" She would explain that I had cancer and had to have surgery, had to have my eyes removed. They would say, "You must have done something wrong. God punished you." Or they would say, "Well, she had cancer. Why didn’t you just let her die? How's she going to live this way?" My mother would have used some expletives not to be repeated and tell them to leave her alone and go away. And then what I loved, what Olivia did, she took a trip to the Grand Canyon, and this is just maybe six lines from that:
"I remember so much about it in terms of the weather. We had sun a bit and we had some extreme cold. It was such a peaceful feeling. Standing at the rim, I could feel the vastness, the enormity of the canyon, even with the breeze, it was quiet. Something came over me. I feel the chill. I was even shaky, but not scared. It struck me as a spiritual feeling. I don't know if it's the same feeling that someone has who can see, but that's how I felt. I felt small, what a beautiful thing to say and to think about."
Ricky Enger: Absolutely. I totally agree. And her story is just one of many that are shared. Certainly, you have excerpts on the website and that's MichaelNye.org. We'll have that in the show notes and hopefully when things are available again, and people can travel, the exhibition can too. But in the meantime, what comes next for you? And do you ever revisit those people that you spent some time with telling their stories? Is there more to say in that exhibition or what comes next?
Michael Nye: I didn't want to stop after seven years. I really loved the process. I have so many friends from those seven years, and I'm in contact with many, many. I think maybe 30 came to the opening around the country. One flew in from Hawaii and all over the country. They came into the opening, which was beautiful. I'm working now on an essay project. I did 27 series of photographs between 88 and 2000, short series of photographs. And I wrote an essay on each one and so I finished that. I just and so I'm rewriting right now. So hopefully that'll be a book and I'm trying to be an advocate for fairness.
Ricky Enger: We very much appreciate that. And there's a lot of work to do, certainly, but as we approach it with passion and again, just recognizing everyone's humanity and helping other people to recognize that as well can really go quite a long way to making things better. Michael, I want to thank you so, so much for joining us today. Is there anything else that you would like to leave the listeners with before we wrap up?
Michael Nye: I just really appreciate your questions and your podcast. I'm going to go online this week and listen to others and thank you so much for including me. I really appreciate that.
Ricky Enger: Absolutely. Thanks for spending time with us.
Got something to say, share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at podcast@hadley.edu. That's P-O-D-C-A-S-T@hadley.edu. Or leave us a message at 847-784-2870. Thanks for listening.
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Books
My Heart Is Not Blind: On Blindness And Perception by Michael Nye
Available on Bookshare
My Heart Is Not Blind: On Blindness And Perception by Michael Nye
Available on Amazon (Kindle and hardcover)
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Episode 37
In this episode we chat with ophthalmologist Dr. Angela Elam from the University of Michigan. Dr. Elam addresses common questions and concerns, and shares her advice for returning to the eye doctor among shifting COVID restrictions.
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Episode 36
Dorrie Rush, OE's Chief Content Officer, joins us for a chat about this wonderful online resource chock full of tips for living well with vision loss. You'll find great articles on using tech tools, tips for health and well-being, stories from others living with vision loss, a terrific podcast, and more.
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Episode 35
Learn about a new service that’s just launched in 2020 called Accessible Pharmacy. Accessible packaging and labeling and personalized customer support all free of charge to the end consumer, and specifically designed for those with vision impairment.
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Episode 34
Audio Describe the World! That’s the mantra of UniDescription: a free smartphone app that provides audio descriptions and navigation tips for US National Parks and other public places.
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Episode 33
In this episode, we chat with low vision optometrist Dr. Mark Wilkinson from the University of Iowa. Dr. Wilkinson answers common questions and shares his advice for getting the most out of low vision optometry appointments.
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Episode 32
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
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Episode 31
Join Hadley advisor Eddie Becerra as he shares about losing his sight from diabetic retinopathy, and how he gained a new perspective on life.
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Episode 30
Classically trained chef Regina Mitchell shares how vision loss shaped her life. Regina worked her way back into the kitchen and is now helping others cook with confidence, no matter their vision.
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Episode 29
In this episode we sit down with the director of Well Connected, an organization that offers free, call-in groups for adults over 60 on a wide variety of interest areas: games, music, meditation and more.
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Episode 28
Support groups can be a great way to connect with others who "get it." Listen in as as low vision support group leaders Lynndah Lahey and Judy Davis describe how their groups are run and what their members get out of them.
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Episode 27
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
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Episode 26
In this episode, we chat with Dr. Tim Murray of the American Society of Retina Specialists. Dr. Murray treats eye diseases such as macular degeneration and diabetic retinopathy. He answers common questions and shares his insights into the future of treatments.
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Episode 25
In this episode, we sit down with Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, and ask her some of the many questions we’ve heard about glaucoma, its risk factors, and how to treat the disease.
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Episode 24
Hadley learning expert Jessica Smith shares her experience raising a puppy that may eventually become a guide dog. She covers what she’s learned and things to consider if you’d like to volunteer to help out a guide dog school.
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Episode 23
October 15 is White Cane Safety Day, a day to recognize this important tool that empowers people with visual impairment to travel safely and independently. It also brings attention to the general public to be mindful of visually impaired neighbors, giving them additional consideration and right-of-way when needed. We sat down with Kellee Sanchez, an orientation and mobility specialist, to talk about the history of White Cane Safety Day, and how a white cane can help those with vision loss.
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Episode 22
Be My Eyes is a free smartphone app that connects visually impaired users with sighted volunteers for help with visual tasks. We sat down with Will Butler from Be My Eyes to hear how the app started, tips for using it, and exciting new features that provide specialized assistance, including with Hadley.
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Episode 21
Tracy Simon from Eye2Eye peer support program shares her story of vision loss, how her program works, and the benefits of connecting with and supporting each other.
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Episode 20
Ophthalmologist Dr. Lori Provencher chats with us about how the coronavirus pandemic has changed doctor's visits. She shares tips for staying safe, questions to ask, and what to expect before, during and after your next office visit.
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Episode 19
Mindfulness expert Tiffany Guske returns to the podcast to share tips and insights on how to cope with life's challenges, such as vision loss or an illness, building resilience and focusing on self-compassion instead of judgment.
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Episode 18
Author of "When You Can't Believe Your Eyes," Hannah Fairbairn, chats with us about how to communicate in everyday situations when you can't rely on visual cues. Hear Hannah's own story about losing vision, her practical tips on adjusting to vision loss, and advice she has on regaining confidence in social situations.
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Episode 17
In this episode, we continue the conversation on living during the COVID-19 pandemic with a visual impairment. Listen in as we share some experiences, tips, and strategies for coping during these difficult times.
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Episode 16
The COVID-19 crisis has brought a wave of change and uncertainty to our everyday lives. Listen in as we share personal experiences, resources and some helpful tips...all from a blind or low vision perspective.
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Episode 15
Assistive technology experts Ricky Enger and Steve Kelley review BlindShell, a mobile phone built for those with visual impairment. They discuss the basic features, how it differs from a traditional smartphone, and how to decide if it's right for you.
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Episode 14
This week we sit down with Dan Roberts, author of "The First Year-Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed" and founder of MDSupport website and support group. Hear Dan's own story about being diagnosed with macular degeneration and what prompted him to reach out to others facing similar circumstances.
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Episode 13
Listen in as we explore the basics of using hand tools with a visual impairment. Gil Johnson, a visually impaired home repair expert, shares tips on everything from measuring, to leveling to hammering.
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Episode 11
Elections are right around the corner. So we gathered a panel to talk about options for voting no matter your level of vision. Listen in as we explore everything you need to know, from registering to vote to the many ways you can cast your ballot.
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Episode 12
Ricky sits down with Android Accessibility Product Manager Brian Kemler to discuss what is available on Android phones for those with visual impairment. From adjusting font size and color, or opting to listen with TalkBack instead, the commitment to making these powerful tools more useful to a wider audience is clear.
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Episode 1
In this episode, we chat with Gil Johnson, an experienced home repair and woodworking enthusiast about things to consider when undertaking home repair with blindness or low vision.
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Episode 2
Hadley's Debbie Good sits down to continue a conversation with author and visually impaired world traveler Dr. Wendy David. Together they explore a wide variety of helpful hints covering train, plane, and cruise travel as well as practical information on traveling internationally and navigating hotels.
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Episode 3
In this episode, Ricky Enger chats with Joe Strechay, associate producer on the Apple TV+ series SEE. The show takes place in a future where, after a viral apocalypse, all humans are blind. Joe takes us behind the scenes of the show and his work to help build an inclusive set for the cast and crew, including those with low to no vision. From casting to costumes, scripting to scenery, hear how Joe helped create a science fiction world that strives to be authentic to life with vision loss.
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Episode 4
Hadley's Debbie Good sits down with travel author Dr. Wendy David in this latest episode. In part one of this two-part interview, Debbie and Wendy discuss tips for traveling with confidence as a blind or low vision person, advice on picking destinations, considerations for traveling alone and in a group, and more!
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Episode 5
Ricky Enger is joined by Hadley's Debbie Worman and mindfulness expert Tiffany Guske in this latest episode. Debbie and Tiffany talk about what mindfulness is and the specific benefits that mindfulness can offer for those living with vision loss. Tiffany then walks listeners through a short mindfulness exercise.
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Episode 6
In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.
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Episode 7
Listen in as we share practical tips on how to keep your handwriting readable. This resource-packed episode includes many useful techniques and solutions to common handwriting challenges. Hadley Learning Expert Jennifer Ottowitz chats with Sue Dalton, Certified Vision Rehabilitation Therapist.
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Episode 8
In this episode, Hadley's Steve Kelley speaks with Kendra Farrow, from the National Research and Training Center on Blindness and Low Vision, located at Mississippi State. The episode serves as a guide for those new to vision rehabilitation, including determining who is eligible for services, key differences between the medical and social services models, and how to locate services in each state.
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Episode 9
In this episode, Ricky Enger chats with Microsoft's Jeremy Curry, a Senior Program Manager with the Windows Accessibility team. New vision accessibility features are now available in Windows 10 for low vision and screen reader users.
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Episode 10
In the inaugural episode of Hadley Presents, Ricky Enger and Jonathan Mosen of Aira chat about the ways in which a visual interpreter service, such as Aira, can be used to gain valuable visual information and enhance travel and leisure activities for blind and low vision users.