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

[paulsandoval75 at gmail.com]

This is very good, thank you for sharing this with us.



From: Colorado-Talk <colorado-talk-bounces at nfbnet.org> On Behalf Of kevan
nfbco.org via Colorado-Talk
Sent: Monday, October 27, 2025 12:09 PM
To: colorado-talk at nfbnet.org
Cc: kevan nfbco.org <kevan at nfbco.org>
Subject: [Colorado-Talk] What is the deal with Ushers?



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.



-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/colorado-talk_nfbnet.org/attachments/20251027/179268f5/attachment.htm>