I think that in disability discourse, wheelchair users face some fairly unique pressure to pretend not to be disabled. At the same time, wheelchair users are treated as the ultimate symbol of disability. In combination, I think there is very little space in which wheelchair users are allowed to talk about their actual experiences and needs. (Even in disability rights space.)
To some extent, all disabled people face some version of this. The thing I think is somewhat unique to wheelchair users is pressure to be the model of successful accessibility. There’s a misconception that accessibility is basically a solved problem for wheelchair users, and that we need to expand that model to all disabled people. This goes alongside a related misconception that the purpose of accessibility is to make disability irrelevant.
Wheelchair users face intense pressure to enthusiastically pretend that wheelchairs and ramps erase disability. This goes alongside pressure to have exactly the kind of disability that fits the story that others want to tell. The story goes: “Wheelchair users can’t walk. Wheelchairs and lifts and ramps solve that problem. If we had ramps everywhere, wheelchair users wouldn’t be disabled anymore.” The reality is much more complicated.
People get very angry when wheelchair users contradict this story. Wheelchair users are often not allowed to have access needs that don’t fit the story — and they’re also not allowed to have *abilities* that don’t fit the story. This anger is so intense that it’s dangerous for wheelchair users to stand and walk in public places. People also get angry at wheelchair users when a ramp is too steep, when it’s blocked, or when they insist that the existence of a lift isn’t good enough, they need to have the key so that they can actually *use* it. There’s not much room in the wheelchair access success story for talking about these realities.
There’s also not very much room in this success story for talking about the realities of growing up with a mobility disability. Children still grow up manhandled by therapists and pressured to learn to walk at all costs. Children still go through repeated surgeries aimed at fixing them. Children still get taught to allow adults to hurt them and touch them in ways that would be regarded as abuse if they were typically developing. Children are still pervasively excluded from educational and recreation activities and expected to bear it with a smile. Ramps and wheelchairs didn’t fix that, and accessibility advocacy should not make those things unspeakable.
The success story has even less room for talking about pleasure. Harriet McBryde Johnson said it better than I could, so I’m going to quote her:
“We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. …
Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”
McBryde Johnson, Harriet. Too Late to Die Young: Nearly True Tales from a Life (p. 255). Henry Holt and Co.. Kindle Edition.
Treating wheelchair users as a symbol of disability successfully erased has the effect of silencing wheelchair users. I think that a lot of us have been complicit in this silencing, and that we need to address this in disability culture. Partly for the sake of better solidarity with wheelchair users; partly because the silencing is hurting all of us.
I think that all disabled people face pressure to see ourselves as characters in a story about accessibility. Sometimes we’re expected to write the story. Sometimes we’re seen as characters in a story someone else is writing. Sometimes we’re supposed to believe that the story has already been written, and that all we have to do is get people to read the book.
I think that wheelchair users face particularly intense pressure to pretend that the story has already been written and has a satisfying ending. That’s not something any of us should envy. It’s not privilege. It’s silencing. And I think we need a lot less silence and a lot more solidarity. It doesn’t have to be this way, and it isn’t always this way. When we have space for honesty about the realities of disability, our communities are a lot stronger.
Wheelchair users are not a collective accessibility success story. Wheelchair users are people. None of us are stories. We’re all people. No amount of accessibility is going to make our bodies and brains irrelevant. Disability rights advocacy shouldn’t be about erasing difference. The point is not sameness; it’s equality. Accessibility is about building a world that treats us all as fully human, differences and all.