Nothing About Us Without Us: On AI, Empathy, and the Voice of the Disabled
Allison Leach describes her chronic pain in meticulous, real-world terms. Not a number between one and ten, but a story. "My pain level was eight out of 10 getting out of bed. That went down to five after I rested on the couch. Then it went back to seven when I tried to stand up briefly while cooking." This is how she traces the topography of her own suffering. And this is why she's become one of the most thoughtful people I've talked to about what AI can actually do.
She uses ChatGPT's memory feature to track this landscape. Instead of relying on apps that flatten experience into metrics, she talks to an AI about the nuance. The context. The variables that shift moment by moment. And something happens that actually works. "It's just been so much more helpful than being able to rely on a single application or my memory," she told me. She can ask it, what was my mobility like before this experimental treatment? It digs back through months of conversation. She remembers. The tool remembers. Together, they build understanding.
But here's what stopped me.
We talked about the future of technology as a tool for empathy. Neural implants are coming, I told her. Imagine if a researcher could actually feel what a patient feels for even ten minutes. Imagine putting yourself in someone else's body, in someone else's pain.
Her response was careful. Gentle. And absolutely unflinching.
"I think it might sound on the surface like it could be a real asset, but I would worry about, you know, pretty ironically, maybe creating more distance between the people that it's intending to help. It reminds me of this book, technoableism, which is about this curative mindset around prosthetics are going to cure disability. Which stories make it into the media? So I'll be just really wary of the maybe misuses of such technology."
She pulled out a phrase that became lodged in my thinking. "Nothing about us, without us." It's from the disability rights movement. It means that any policy, any technology, any future intended to help disabled people must be designed by disabled people. Not for. With. Not about them, without them.
This is the ethical foundation of conscious UX that I keep returning to. It's not innovation for its own sake. It's not technology because we can build it. It's humility. It's listening. It's knowing that I, as a designer, as someone without chronic pain, without the lived experience of disability, can never truly design the solution. Only the person living it can.
Allison uses AI tools every hour of every day. She's comparing ChatGPT to Claude to Gemini to Perplexity. She's thinking deeply about which one has less bias, which one tries to please her too much, which one gives her the honest answer she needs. "ChatGPT has been a little bit pandering to the user," she noticed. "It tries to please whatever the user's aim is, even though I'll give instructions to please tell me your honest opinion. Don't sugarcoat anything."
She's a researcher. She's an expert. And she's clear about one thing: for all we can do with AI, there are limits.
"There's a lot of nuance that it's not going to pick up on," she said.
And that's the wisdom. That's the boundary. That's where conscious design begins. Not in the tool. In knowing what the tool cannot do. In keeping your own expertise, your own judgment, your own voice at the center of the work.
The most powerful AI experiences I'm seeing aren't replacing human knowledge. They're amplifying it. They're letting people like Allison spend less time wrestling with formatting and more time thinking deeply about what her body is telling her. Less time fighting the blank page. More time noticing the pattern.
So when we talk about the future of AI and disability, of AI and healthcare, of AI in any space where people are vulnerable and real and alive, I'm thinking of Allison's phrase. Nothing about us, without us. Make sure the people most affected are in the room. Make sure they have control. Make sure their voice isn't just heard, but centered. Make sure their lived experience shapes every single decision.
Because the best AI will never know what it's like to hurt. To persist anyway. To trace your own healing with such honesty that a machine can finally help you understand yourself.
The disability community has been saying this for decades. It's time we listened.