[Colorado-Talk] What is the deal with Ushers?

[kevan nfbco.org]

Dear colleagues and friends,

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.

WHY I’M SHARING THIS I’m posting this to help others understand-not just what it’s like for me, but for anyone living with Usher Syndrome. If you’re 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.
WHAT IT’S LIKE LIVING WITH USHER SYNDROME I’m deaf-but not deaf. Blind-but not blind. I live with Usher Syndrome, and I’ve spent years studying how it affects me-not just physically, but cognitively and emotionally. This isn’t a guide on how I adapt. It’s a window into how it feels to live inside this shrinking sensory map.
VISION AT 8% AND SHRINKING Seeing with 8% of your visual field isn’t just narrow-it’s 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’re left scanning like a machine-grid by grid-hoping to catch something before it slips past the edge.
I’m now down to around 8 degrees or less. That’s so small I can’t see a full face unless it’s perfectly centered. It takes much longer to study new areas. I’ve learned to scan and give my brain time to build a model-but that model is fragile.
THE VOID AND THE WASHOUT People think vision loss means seeing black. It doesn’t. The areas I can’t see aren’t dark-they’re just gone. No color, no blur, no edge. It’s not like closing your eyes. It’s like those parts of the world never existed.
Everyone has this void. You don’t see behind your head, and you don’t see the edges of your own eyes. But your brain fills in the blanks. You know what’s around you because you’ve seen it before. You’ve built a model. With ush, that model starts to collapse. The parts of vision that are dying off don’t vanish cleanly-they fray. They wash out like static, scattered with random dead cells.
COGNITIVE OVERLOAD AND STRESS COLLAPSE As peripheral vision shrinks-slowly, almost imperceptibly-our brains work overtime to keep up. At around 20% field, you start to feel it. The brain doesn’t get enough data to build the world around you. It starts guessing. It starts failing.
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-like finding a seat or recognizing a friend-become monumental.
I rarely feel stressed at work. There, I control the environment. But in social settings-bars, restaurants, parties-it’s chaos. And chaos is the enemy of accessibility.
DEAF, BUT NOT DEAF Without my hearing aids, I hear nothing. With them, I hear enough-sometimes. In quiet places, I can catch about 75% of what’s said. That’s a gift. But add background noise, multiple voices, music, clinking glasses-and that drops fast. Ten percent comprehension, maybe less.
People don’t know. They see me miss a word, pause too long, or respond offbeat-and they assume I’m slow. Not smart. Not engaged. But I am. I’m just decoding chaos.
CROWDS, FACES, AND SOCIAL SPACES Most meetups happen in the worst possible environments for someone with ush2:
New location → unfamiliar layout
Dim lighting → cones struggle, rods are gone
Loud background → hearing clarity vanishes
Crowded space → constant scanning, no peripheral help
Reading someone’s face requires full-field vision. But with 10 degrees or less, I might only catch a mouth or an eye-never both. Microexpressions? Gone. Subtle cues? Missed. I rely on tone, context, and educated guesses. And that’s risky.
Suggesting a quieter, more controlled space-like my home-makes sense. But socially? It’s loaded. People hear “my place” and think it’s weird, forward, or inappropriate. What I mean is: I need clarity to connect. What they hear is: You’re crazy.
WHAT FAMILY AND FRIENDS ASK People often ask, “What does your kid see with ush?” or “How do you get around?” What they’re really asking is: What does it feel like to live inside that view?
It’s not just about what’s missing-it’s about how the brain, the body, and the emotions respond to that missingness. It’s 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.
WHAT NORMAL VISION ACTUALLY IS-AND WHY PICTURES FAIL Most people think they see everything around them. But they don’t. Your field of view is about 120 degrees forward, and beyond that-there’s 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’re seeing a full panorama.
That’s why it’s so hard to show what vision loss feels like. Most simulations use a small circle of sight surrounded by black. But that’s wrong. I don’t see black around my vision. I see nothing. And you do too-just not consciously.
You can’t make a picture show “void.” You can only fake it. And that’s part of the challenge in helping others understand what it’s like to live with ush2.
MOTION, BLUR, AND THE LOSS OF RODS Rods are the cells that detect light and motion. They’re fast, sensitive, and work in low light. Cones, on the other hand, see color-but they’re slow and need strong light to function.
Most of my rods are gone. That means:
I can’t track motion well.
A ball flying through the air? Nearly invisible.
Someone walking into view? Feels like they appeared out of nowhere.
Even sign language is hard now. I can’t follow fast hand movements. I have to look up and down-lips, hands, lips, hands-and if they move too quickly, it’s just a blur. I miss the message. I miss the moment.
THE BRIGHT LIGHT PARADOX Just like you, I’ve noticed something strange: bright lights don’t help-they hurt. In dark areas or even on a sunny day, a bare bulb or uncovered light source can wash out everything else. You’d think, “If I can’t see well, shouldn’t more light help?” But it doesn’t.
As we lose rods-the cells that handle low light and motion-our cones take over. But cones aren’t built for harsh contrast. They’re slow, they need strong light, and they don’t handle glare well. So instead of clarity, we get pain. Instead of detail, we get distortion.
And it gets worse over time. The more vision we lose, the more these lights dominate the field. They don’t illuminate-they overwhelm.
IMAGE REFLECTIONS Familiar Environment - Brain Fills In In a known space, my brain helps fill in the blanks. I feel like I see more than I do-but it’s just memory doing the work.
New Environment - Vision Shrinks In unfamiliar places, the field collapses. I see less. I feel lost. There’s no model to lean on.
Crowded, Dimly Lit Bar - 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’s darker. Not because the cells are gone-but because they’re alive and starved of light. The result is a kind of black-not true void, but a light-starved washout.
COMING SOON In a future post, I’ll talk about how perception works-like 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’s what it’s like when your brain lacks the data it needs to build meaning.
THANK YOU FOR READING This is just one perspective-but it’s real. And if it helps even one person see the world a little differently, it’s worth sharing.

At your service,
Kevan Worley
303-929-2369
Manager Project Literacy, National Federation of the Blind of Colorado
The National Federation of the Blind is a community of members and friends who believe in the hopes and dreams of the nation’s blind. Every day we work together to help blind people live the lives they want.
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.

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