Written and published on the 18th of November, 2025.
Content notes: the death of a community member, Alice Wong, is mentioned.
Theoretically, you are a researcher, I am a study participant, and my disabilities are the only ones relevant here. In practice, I say I am speaking up like Alice told us to in her last words and it’s the first you’ve heard that she’s become an ancestor, and you break down in tears and professionalism on both sides be damned, I talk about her with the experimental communication method, then with the normal chat function, and then, finally, some words spill out of my mouth, too fast and too certain like your tears.
We are in community, I say, by typing, and if you need to end this call or if you need to talk about it I can do either. We take care of each other. Damn the boundaries – something I’d never usually say, but in this instance we put the research aside to sit in community for a few minutes. I offer to correspond after this study is done, to talk about research and pedagogy and disability theory. You say you’d like that. We probably never will, but I have come to understand that it is nice to have the possibility, at least the theoretical possibility. Community is important. Networks are important.
Growing up with social and communication disabilities, I grew up telling myself that existing alone was a kind of messed-up praxis I operated with, that it was some kind of activism to defiantly exist in the way I supposed my disabilities to some degree dictated. Then I read Leah Lakshmi Piepzna-Samarasinha, and Laura Hershey, and Stacey Park Milbern, and Alice Wong.
We are a web, a network, and we need each other, as much as it can suck to hear it. A neuron doesn’t exist alone.
I am trying to be in community. It is inherently difficult. I am more absent and do less than I would ever wish to be or do. But whenever I enter a space where most other people are Disabled, I feel safe and at home in a way that I have never felt elsewhere. It is the feeling of belonging, genuine belonging for who and what I am and all the messy inconvenient awful things that having me around can entail.
To give that to you for a few moments, if I can, is vital. Our survival depends on it.
“The real gift any person can give is a web of connective tissue,” Alice said. We speak to each other with “incandescent filaments.” I don’t quote this to mean speaking verbally, I don’t quote this to mean in a 1:1 conversation, although it can be that as well.
We, disabled people, disabled community, need each other. We must not be swayed by the respectability politics of independence, of ‘normalisation’ not as an expansion of the boundaries of what is acceptable but as something forceful and violent that pushes and snaps us into shape or cuts us off.
That is to say, I’m sorry that you found out that way, but I’m glad that I could be there.