What I Talk About When I Say "Deafblind": Identity, Advocacy, and Usher Syndrome
Why identity isn't just what you call yourself—it's what happens when you do.
I've been thinking a lot lately about identity. Not the kind you throw in your Instagram bio. The kind you carry quietly until you realize it's shaped everything.
For most of my life, I identified as Deaf or hard of hearing.
That felt true. It still does.
But as my vision changed and I learned more about myself, I started naming something else, too: I'm Deafblind.
And I have Usher syndrome.
Both are true. But how I say them, when I say them, and who I say them to? That's where things get complicated.
Here's what I mean:
For a long time, even in Deaf spaces, I'd say "I have Usher syndrome."
It was shorthand. People in the Deaf community recognized it. They knew what it meant without me having to explain the vision loss, the genetic piece, the progressive nature of it all.
And honestly? It worked. It helped people understand quickly so they could adjust, tap me on the shoulder instead of waving, let me choose where to sit, make sure I could follow the conversation. There's no drama. No assumptions. Just quiet understanding and small adjustments that make a big difference. That's what accessibility as strategy looks like in practice—thoughtful, proactive, and woven into how things work, not tacked on as an afterthought.
But here's what I'm realizing now: When I say "I have Usher syndrome," I'm centering the medical diagnosis.
I'm naming a condition. A syndrome. Something that happened to me, rather than something I am.
And while that's useful in medical settings or when I'm talking to doctors, audiologists, or researchers, it's not actually the most accurate or empowering way to talk about my identity in everyday life.
What I should be saying—what I'm working on saying more—is simply: I'm Deafblind.
That's the identity. That's the lived experience.
It tells people what they need to know: I experience the world differently. I need certain supports. I move through space and communication in ways most people don't notice or think about. And I don't have to medicalize myself to be understood.
This shift isn't about rejecting the diagnosis.
Usher syndrome is real. It's genetic. It's degenerative. It explains why I'm Deafblind.
But in most conversations—especially outside of medical or research contexts—people don't actually need to know the "why." They just need to know the "what."
I'm Deafblind. That's enough.
It's a shift I'm still practicing.
Because for years, even in Deaf spaces where you'd think identity-first language would be the norm, we got used to naming the medical condition. It became a habit. A way to be believed, to be taken seriously, to avoid follow-up questions.
But the more I sit with it, the more I realize: I don't owe anyone my medical history just to validate my access needs.
Saying "I'm Deafblind" should be enough. And if it's not? That's not my problem to solve by disclosing more.
So now, I'm choosing "Deafblind" first.
Not because I'm hiding anything. Not because Usher syndrome isn't part of my story.
But because my identity isn't defined by a diagnosis. It's defined by how I move through the world, what I need to thrive, and the community I'm part of. And that's what "Deafblind" captures.
But outside Deaf spaces, even saying "I'm Deafblind" can be complicated. Because once I name it, I'm often fielding questions I didn't ask for:
"Wait… how blind are you?"
"But you seem totally normal."
"You don't use a cane, so…?"
"Are you going to go fully blind?"
"Can you still work?"
So I weigh it. Not because I don't want to explain. I'm proud of who I am. I don't mind telling people I'm Deafblind because honestly, it's shaped so much of how I move through the world. I want people to understand.
But sometimes? I just want to order a couple of tacos. I just want to be.
And in those moments, I do the mental math:
Do I have the energy for this conversation right now?
Will saying "I'm Deafblind" help or just invite more questions I don't want to answer?
If I'm out in public alone, I'll usually just type my order on my phone. Because it's easier than watching someone get flustered when I say, "I can't hear you."
It's not about shame. It's about energy. About ease. About choosing when to educate—and when to rest.
This is one of the reasons I talk so much about accessibility in business. Because when you build accessible practices into your work—not because it's trendy, but because it matters—you create spaces where people like me don't have to do that mental math every single time we show up.
That's what people don't always see: Identity isn't just what you call yourself. It's what happens after you say it. It's how people respond. Or don't. It's the mental math you do every time you show up in a new space.
Still, I say it.
Because naming it, even when it's hard, is part of my advocacy. It's part of making space for others who are figuring out how to say it too.
If you've ever felt like your identity was too complicated Too blurry, too changeable, too much work to explain You're not alone.
You don't have to justify what you know about yourself. You don't owe anyone a TED Talk just to be believed. And you can hold all the complexity without shrinking any of it.
