<html><head><meta http-equiv="content-type" content="text/html; charset=utf-8"></head><body dir="auto">Outstanding! Thanks for reposting this Kevan, and thanks, Stephen for the thoughtful explanations!<br id="lineBreakAtBeginningOfSignature"><div dir="ltr">Dan Burke - Sent from iPhone</div><div dir="ltr"><br><blockquote type="cite">On Oct 27, 2025, at 12:10\u202fPM, kevan nfbco.org via Colorado-Talk <colorado-talk@nfbnet.org> wrote:<br><br></blockquote></div><blockquote type="cite"><div dir="ltr">\ufeff
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<p class="MsoNormal"><span style="font-size:11.0pt">Dear colleagues and friends, <o:p>
</o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Over the years, we have had a number of members who are deaf blind. Many of them due to Ushers. Downtown COS Steven Woods posted this on Facebook the other day. I found it quite informative. I hope you will
as well. As we work to be inclusive, I think this piece will help me to make sure my communication is clear, inclusive, and empowering.
<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">WHY I\u2019M SHARING THIS I\u2019m posting this to help others understand\u2014not just what it\u2019s like for me, but for anyone living with Usher Syndrome. If you\u2019re a friend, a family member, or someone trying to support
someone with USH, I hope this gives you insight into how and why it works the way it does.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">WHAT IT\u2019S LIKE LIVING WITH USHER SYNDROME I\u2019m deaf\u2014but not deaf. Blind\u2014but not blind. I live with Usher Syndrome, and I\u2019ve spent years studying how it affects me\u2014not just physically, but cognitively and emotionally.
This isn\u2019t a guide on how I adapt. It\u2019s a window into how it feels to live inside this shrinking sensory map.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">VISION AT 8% AND SHRINKING Seeing with 8% of your visual field isn\u2019t just narrow\u2014it\u2019s unpredictable. In familiar places, your brain fills in blanks with memory and habit. But in new environments, that fill-in
function collapses. Your usable field shrinks even more, and you\u2019re left scanning like a machine\u2014grid by grid\u2014hoping to catch something before it slips past the edge.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">I\u2019m now down to around 8 degrees or less. That\u2019s so small I can\u2019t see a full face unless it\u2019s perfectly centered. It takes much longer to study new areas. I\u2019ve learned to scan and give my brain time to build
a model\u2014but that model is fragile.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">THE VOID AND THE WASHOUT People think vision loss means seeing black. It doesn\u2019t. The areas I can\u2019t see aren\u2019t dark\u2014they\u2019re just gone. No color, no blur, no edge. It\u2019s not like closing your eyes. It\u2019s like
those parts of the world never existed.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Everyone has this void. You don\u2019t see behind your head, and you don\u2019t see the edges of your own eyes. But your brain fills in the blanks. You know what\u2019s around you because you\u2019ve seen it before. You\u2019ve built
a model. With ush, that model starts to collapse. The parts of vision that are dying off don\u2019t vanish cleanly\u2014they fray. They wash out like static, scattered with random dead cells.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">COGNITIVE OVERLOAD AND STRESS COLLAPSE As peripheral vision shrinks\u2014slowly, almost imperceptibly\u2014our brains work overtime to keep up. At around 20% field, you start to feel it. The brain doesn\u2019t get enough
data to build the world around you. It starts guessing. It starts failing.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Stress makes it worse. When the brain is overloaded, it stops filling in blanks. It stops compensating. Your world shrinks even more. You lose the ability to model your surroundings, and basic tasks\u2014like finding
a seat or recognizing a friend\u2014become monumental.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">I rarely feel stressed at work. There, I control the environment. But in social settings\u2014bars, restaurants, parties\u2014it\u2019s chaos. And chaos is the enemy of accessibility.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">DEAF, BUT NOT DEAF Without my hearing aids, I hear nothing. With them, I hear enough\u2014sometimes. In quiet places, I can catch about 75% of what\u2019s said. That\u2019s a gift. But add background noise, multiple voices,
music, clinking glasses\u2014and that drops fast. Ten percent comprehension, maybe less.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">People don\u2019t know. They see me miss a word, pause too long, or respond offbeat\u2014and they assume I\u2019m slow. Not smart. Not engaged. But I am. I\u2019m just decoding chaos.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">CROWDS, FACES, AND SOCIAL SPACES Most meetups happen in the worst possible environments for someone with ush2:<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">New location \u2192 unfamiliar layout<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Dim lighting \u2192 cones struggle, rods are gone<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Loud background \u2192 hearing clarity vanishes<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Crowded space \u2192 constant scanning, no peripheral help<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Reading someone\u2019s face requires full-field vision. But with 10 degrees or less, I might only catch a mouth or an eye\u2014never both. Microexpressions? Gone. Subtle cues? Missed. I rely on tone, context, and educated
guesses. And that\u2019s risky.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Suggesting a quieter, more controlled space\u2014like my home\u2014makes sense. But socially? It\u2019s loaded. People hear \u201cmy place\u201d and think it\u2019s weird, forward, or inappropriate. What I mean is: I need clarity to connect.
What they hear is: You\u2019re crazy.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">WHAT FAMILY AND FRIENDS ASK People often ask, \u201cWhat does your kid see with ush?\u201d or \u201cHow do you get around?\u201d What they\u2019re really asking is: What does it feel like to live inside that view?<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">It\u2019s not just about what\u2019s missing\u2014it\u2019s about how the brain, the body, and the emotions respond to that missingness. It\u2019s about how long it takes to recover from a noisy dinner. How hard it is to find something
you dropped on the floor. How exhausting it is to navigate a new space when your brain has no model to work from.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">WHAT NORMAL VISION ACTUALLY IS\u2014AND WHY PICTURES FAIL Most people think they see everything around them. But they don\u2019t. Your field of view is about 120 degrees forward, and beyond that\u2014there\u2019s nothing. Not
black. Not blur. Just absence. And yet, you never notice it. Your brain fills in the blanks so seamlessly that you think you\u2019re seeing a full panorama.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">That\u2019s why it\u2019s so hard to show what vision loss feels like. Most simulations use a small circle of sight surrounded by black. But that\u2019s wrong. I don\u2019t see black around my vision. I see nothing. And you do
too\u2014just not consciously.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">You can\u2019t make a picture show \u201cvoid.\u201d You can only fake it. And that\u2019s part of the challenge in helping others understand what it\u2019s like to live with ush2.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">MOTION, BLUR, AND THE LOSS OF RODS Rods are the cells that detect light and motion. They\u2019re fast, sensitive, and work in low light. Cones, on the other hand, see color\u2014but they\u2019re slow and need strong light
to function.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Most of my rods are gone. That means:<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">I can\u2019t track motion well.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">A ball flying through the air? Nearly invisible.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Someone walking into view? Feels like they appeared out of nowhere.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Even sign language is hard now. I can\u2019t follow fast hand movements. I have to look up and down\u2014lips, hands, lips, hands\u2014and if they move too quickly, it\u2019s just a blur. I miss the message. I miss the moment.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">THE BRIGHT LIGHT PARADOX Just like you, I\u2019ve noticed something strange: bright lights don\u2019t help\u2014they hurt. In dark areas or even on a sunny day, a bare bulb or uncovered light source can wash out everything
else. You\u2019d think, \u201cIf I can\u2019t see well, shouldn\u2019t more light help?\u201d But it doesn\u2019t.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">As we lose rods\u2014the cells that handle low light and motion\u2014our cones take over. But cones aren\u2019t built for harsh contrast. They\u2019re slow, they need strong light, and they don\u2019t handle glare well. So instead
of clarity, we get pain. Instead of detail, we get distortion.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">And it gets worse over time. The more vision we lose, the more these lights dominate the field. They don\u2019t illuminate\u2014they overwhelm.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">IMAGE REFLECTIONS Familiar Environment \u2013 Brain Fills In In a known space, my brain helps fill in the blanks. I feel like I see more than I do\u2014but it\u2019s just memory doing the work.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">New Environment \u2013 Vision Shrinks In unfamiliar places, the field collapses. I see less. I feel lost. There\u2019s no model to lean on.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">Crowded, Dimly Lit Bar \u2013 A Good Day This image shows what I might see in a bar on a good day. I can just make out a face. But most days? It\u2019s darker. Not because the cells are gone\u2014but because they\u2019re alive
and starved of light. The result is a kind of black\u2014not true void, but a light-starved washout.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">COMING SOON In a future post, I\u2019ll talk about how perception works\u2014like how a picture held 6 inches from your face might look like random lines or shapes, but held 3 feet away, your brain suddenly understands
it. That\u2019s what it\u2019s like when your brain lacks the data it needs to build meaning.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt">THANK YOU FOR READING This is just one perspective\u2014but it\u2019s real. And if it helps even one person see the world a little differently, it\u2019s worth sharing.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">At your service,
<span style="mso-ligatures:none"><o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">Kevan Worley<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">303-929-2369<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">Manager Project Literacy, National Federation of the Blind of Colorado<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">The National Federation of the Blind is a community of members and friends who believe in the hopes and dreams of the nation\u2019s blind. Every day we work together to help blind people live the
lives they want.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family:"Abadi",sans-serif">Colorado Center for the Blind believes when you believe in yourself and experience a thriving community of positive blind people, nothing can hold you back from pursuing your dreams.<o:p></o:p></span></p>
<p class="MsoNormal"><o:p> </o:p></p>
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