Here is the first thing that I learned to say to people when I saw them noticing my body:
“I have a mild left-hemiparesis. The part of my brain that controls my left side doesn’t work very well. Since I was born, I have not had good fine-motor control in my left side. It’s ok; I can find a way to do most things.”
I don’t remember learning that script. I certainly had it by preschool, the way I could recite my address and phone number. Its main purpose was to assert that I was not currently in distress; that I did not need to be treated as fragile; that I did not want extra help or special attention. My understanding was that I had to energetically deny that anything was wrong or else I would be separated from “normal” kids and taken to a worse place where “actually disabled” kids (which I wasn’t, somehow) were kept. That was my theory of human variation: there were normal kids, there were kids who had “real” disabilities, and there was me.
My road to “disability pride” runs through unlearning this rejection of other disabled people. I remember a cold knot forming in my stomach at camp one summer, when a boy with whom I had been friendly showed me his own hand, also congenitally underdeveloped, and said (it is such a clear memory), “I think we’re going to be fast friends.” I avoided him for the rest of the summer.
Disability is not a spectrum. A spectrum is a continuous range between extremes. I used to imagine that it was; I used to assign myself a place, more-fortunate-than or less-fortunate-than, more-legitimate-than or less-legitimate-than, in a stack-ranking relative to every other body type and mental or cognitive way of being. But to internalize that model is to objectify oneself and everyone else in the world. Rather, disability is a specific type of experience of otherness, claimable, in my belief, by anyone who feels that it describes them. It includes things that are physical and not, visible and not, outward and inward. It is a way that one is made to feel separate from the human-ness one observes in the world; from the humans who are addressed by the history of the world; from the “unbroken chain” of technologies and ways of living passed down from one’s ancestors. It shares these qualities with types of other-ness that have different names, but which it would be insulting, in a paradox of self-betrayal, to call disabilities and thus are not disabilities. There is no spectrum from any one thing to any other thing to which this dynamic can be reduced.
Disability is not a spectrum. But disability is relative. One can only be disabled relative to some environmentally or culturally “normal” set of abilities. This is both widely known and profoundly misunderstood. There is a saying that illustrates the depth of this misunderstanding; to invoke it I need to take a step out of my lane and for that I apologize. It goes like this: “In the land of the blind, the one-eyed man is king.” What a saying! Do we imagine that, in their land, the “blind” people are sat with string around vats of wax, dipping candles for the day this guy arrives? Do they invent electric lights for him? Do they build him an automobile? Does daytime there come with visible light at all? What a curiously self-serving set of assumptions! Alas, it would not be so. In the land of the blind, the one-eyed man would be tormented by the inability to ever communicate or be valued for what he saw in the unused light from occasional snaps of static or odd chemical reactions; he would not even have the term “gaslit” with which to describe being constantly pitied, dismissed and ignored. That is what it means that disability is relative. It means that the nature and the deliberate arrangement of the world can be for the benefit of others, regardless of one’s abilities; that one’s means of life and comfort can struggle against that nature and deliberate arrangement, and that it can be that way forever, with no change or justification or relenting at all. The road to “disability pride” should not cheerfully detour around that truth. It should not watch disabled people struggle in the world and then, to silence the unease that brings, load us up with expectations of heroism and overcoming.
It has taken me a long time to find anything I like in the phrase “disability pride.” Part of the reason, as I said, is that it brings up for me all of the times that I choose to try to “pass” and to reject instead of to represent. But in the end it is exactly the idea of representing that I like. Being able to say what one feels about oneself, even when it makes other people uncomfortable, is required for self-determination. In that sense, “pride” is a kind of assertiveness—a strongly-held sense of what one is—that one does not pick up or put down for the benefit of others. Sometimes it means saying, “I can’t do that” loudly enough that people will be embarrassed by the sudden realization of what they expect or take for granted. Sometimes it means looking at the well of care for disabled people—the elaborate and inspiring way that humans everywhere really do try to make room for us—and asking why that well is not also available for anyone to draw from in the moments when they need it. Why disabled people are sometimes given doctor’s notes excusing us from feudalism, rather than disassembling feudalism for everyone.
This isn’t about putting a spotlight on uncomfortable truths, really, or about asking for more from a world that has given me plenty already. It’s about asking, for myself as a disabled person, and for other disabled people, and for all of the other kinds of people who ask—that we should be included rather than accounted for, and allowed to complicate your understanding of the world rather than edited, or made symbolic, to fit within it.
Resolving the strange equation of “one-eyed in the land of the blind” equals “not blind” is left as an exercise for the reader. ↩︎