What I Talk About When I Say “Deafblind”
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:
When I say “Deafblind,” it’s about lived experience.
It tells people: 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.
When I say “I have Usher syndrome,” I’m naming the medical diagnosis behind that experience.
It’s genetic. It’s degenerative. It explains the peripheral vision loss and hearing loss that shape my days.
And I do use both terms.
In the Deaf community, saying “I have Usher’s” actually helps.
People recognize it. They’ve seen it before.
And more importantly, they know how to respond.
It’s not about pity or curiosity. It’s about practicality.
They understand I might not see them if they’re waving from the side.
So they tap me on the shoulder. They let me choose where I sit.
They make space for me to follow the conversation, without needing me to ask first.
There’s no drama. No assumptions. Just quiet understanding and small adjustments that make a big difference.
It’s not about medical labels—it’s about mutual understanding.
It helps things flow.
But outside that context?
Saying “I have Usher syndrome” hits different.
Suddenly, I’m 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. But not because I don’t want to explain.
I’m proud of who I am.
I don’t mind telling people I have Usher syndrome 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, saying “Deafblind” is simpler.
The definition’s right there.
I don’t have to spell it out, or try to explain how I don’t read lips, or why “hard of hearing” doesn’t quite cover it, or why I’m speaking instead of signing.
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.
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.
Want to go deeper with your team or community?
If this resonated with you, and you’re ready to unpack identity in a space that’s thoughtful and nuanced. I’d love to bring this conversation to your organization.
Disrupting Layers of Identity
A transformative and collaborative workshop for small groups.
This session centers the lived complexity of identity—how it evolves, how it shows up in our work, and why it matters for real inclusion.
Through guided reflection and honest dialogue, we’ll explore how accessibility and identity intersect—so your team can lead with more empathy, clarity, and care.
Learn more and book the workshop here Or reach out directly to talk through what might fit best for your group.
