As I was drafting my last piece on Friday, “They have to be able to talk about us without us”, my thoughts of course went to one of the most famous slogans of the disability rights movement, “Nothing about us without us.” I wasn’t unaware that there were similarities in the phrasing of what I wrote. But I think the topic of communicating effectively to groups, as I wrote about the other day, and ensuring that disabled people are centered in disability advocacy, are such different subjects that I didn’t want to just quickly gloss over the topic in a sidebar of a larger piece. They're very distinct topics that really only share a few words in common.

One of the great joys of becoming friends with a number of really thoughtful and experienced disability rights activists over the last several years has been their incredible generosity in teaching me about so much of the culture and history of the movements that they’ve built their work upon, and one of the most powerful slogans has been that refrain of “nothing about us without us”.

Here I should start by acknowledging Alice Wong, who we recently lost, who founded the Disability Visibility Project, and a MacArthur Fellow, and a tireless and inventive advocate for everyone in the disabled community. She was one of the first people to bring me in to learning about this history and these movements, more than a decade ago. She was also a patient and thoughtful teacher, and over our many conversations over the years, she did more than anyone else in my life to truly personify the spirit of “nothing about us without us” by fighting to ensure that disabled people led the work to make the world accessible for all. If you have the chance, learn about her work, and support it.

But a key inflection point in my own understanding of “nothing about us without us” came, unsurprisingly, in the context of how disabled people have been interacting with technology. I used to host a podcast called Function, and we did an episode about how inaccessible so much of contemporary technology has become, and how that kind of ruins things for everyone. (The episode is still up on Spotify and Apple Podcasts.) We had on Emily Ladau of The Accessible Stall podcast, Alex Haagaard of The Disabled List, and Vilissa Thompson of Ramp Your Voice. It’s well worth a listen, and Emily, Alex and Vilissa really do an amazing job of pointing to really specific, really evocative examples of obvious places where today’s tech world could be so much more useful and powerful for everyone if its creators were making just a few simple changes.

What’s striking to me now, listening to that conversation six years later, is how little has changed from the perspective of the technology world, but also how much my own lived experience has come to reflect so much of what I learned in those conversations.

Each of them was the "us" in the conversation, using their own personal experience, and the experience of other disabled people that they were in community with, to offer specific and personal insights that the creators of these technologies did not have. And whether it was for reasons of crass commercial opportunism — here's some money you could be making! — or simply because it was the right thing to do morally, it's obvious that the people making these technologies could benefit by honoring the principle of centering these users of their products.

Taking our turn

I’ve had this conversation on various social media channels in a number of ways over the years, but another key part of understanding the “us” in “nothing about us without us” when it comes to disability, is that the “us” is all of us, in time. It's very hard for many people who haven’t experienced it to understand that everyone should be accommodated and supported, because everyone is disabled; it’s only a question of when and for how long.

In contemporary society, we’re given all kinds of justifications for why we can’t support everyone’s needs, but so much of those are really grounded in simply trying to convince ourselves that a disabled person is someone else, an “other” who isn’t worthy or deserving of our support. I think deep down, everyone knows better. It’s just that people who don’t (yet) identify as disabled don’t really talk about it very much.

In reality, we'll all be disabled. Maybe you're in a moment of respite from it, or in that brief window before the truth of the inevitability of it has been revealed to you (sorry, spoiler warning!), but it's true for all of us — even when it's not visible. That means all of us have to default to supporting and uplifting and empowering the people who are disabled today. This was the key lesson that I didn’t really get personally until I started listening to those who were versed in the history and culture of disability advocacy, about how the patronizing solutions were often harmful, or competing for resources with the right answers.

I’ve had my glimpses of this myself. Back in 2021, I had Lyme disease. I didn’t get it as bad as some, but it did leave me physically and mentally unable to function as I had been used to, for several months. I had some frame of reference for physical weakness; I could roughly compare it to a bad illness like the flu, even if it wasn’t exactly the same. But a diminished mental capacity was unlike anything I had ever experienced before, and was profoundly unsettling, deeply challenging my sense of self. After the incident I’d described in 2022, I had a series of things to recover from physically and mentally that also presented a significant challenge, but were especially tough because so much of people’s willingness to accommodate others is based on any disability being visible. Anything that’s not immediately perceived at a superficial level, or legible to a stranger in a way that’s familiar to them, is generally dismissed or seen as invalid for support.

I point all of this out not to claim that I fully understand the experience of those who live with truly serious disabilities, or to act as if I know what it’s been like for those who have genuinely worked to advocate for disabled people. Instead, I think it can often be useful to show how porous the boundary is between people who don’t think of themselves as disabled and those who already know that they are. And of course this does not mean that people who aren't currently disabled can speak on behalf of those who are — that's the whole point of "nothing about us without us"! — but rather to point out that the time to begin building your empathy and solidarity is now, not when you suddenly have the realization that you're part of the community.

Everything about us

There’s a righteous rage that underlies the cry of “nothing about us without us”, stemming from so many attempts to address the needs of disabled people having come from those outside the community, arriving with plans that ranged from inept to evil. We’re in a moment when the authoritarians in charge in so much of the world are pushing openly-eugenicist agendas that will target disabled people first amongst the many vulnerable populations that they’ll attempt to attack. Challenging economic times like the one we’re in affect disabled people significantly harder as the job market disproportionately shrinks in opportunities for the disabled first.

So it’s going to take all of us standing in solidarity to ensure that the necessary advocacy and support are in place for what promises to be an extraordinarily difficult moment. But I take some solace and inspiration from the fact that there are so many disabled people who have provided us with the clear guidance and leadership we need to navigate this moment. And there is simple guidance we can follow when doing so to ensure that we’re centering the right leaders, by listening to those who said, “nothing about us without us.”