I think a lot of autistic people for some reason think that autism is unique among conditions, as having positive aspects. When really, it's not at all unique. Not even unusual. Not even slightly. Here's a quote I really like from Harriet McBryde Johnson, a woman who wrote really great things about disability in general:
***begin quote***
My path is constrained but endlessly varied. I watch the sun move up in the morning sky and in and out of clouds, take in the changing light that constantly reinvents the cities classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of sea and flowering trees and restaurant grease. Some of the best mornings are the mornings when nothing happens, when there is no story but the continuing relationship of this old city with the ocean that roars just out of sight and with the living jungle that tentatively tolerates our existence here.
How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.
For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.
But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.
I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.
But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that might seem a bit odd.
Let me give some examples.
John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.
A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.
Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore. As he lives with one marvelous view, he says life doesn’t go away; where would it go? he says life has never been richer or more juicy.
In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.
After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.
My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.
At a summer camp, a mentally ret*d boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her explanations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.
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.
Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may at one time have done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.
The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.
***end quote***
She had a severe neuromuscular condition (in her words, she was "a jumble of bones in a floppy bag of skin", and was twisted into a very unusual shape that was highly noticeable the moment you looked at her) that ultimately killed her at the age of fifty. She didn't want to be cured. Her words were, "I have no interest at all in a cure for my disease. And there again the community is by no means monolithic. Christopher Reeve really and truly cared deeply about cure. He was sincere. Nobody was forcing him to do the work that he did. And that's legitimate. That came from his experience. But to me, my disability is -- I mean, it is part of my DNA. It's in every -- every -- would you say "molecule" of me? I don't know enough about the biology. But I mean, you know, at the tiniest level, the disability is part of who I am and, you know I really have no interest in changing that. It seems to me much more interesting to figure out what to do with this kind of body and this kind of life. Now when my mother got breast cancer, I was very glad that there were some good treatments for her. And maybe that doesn't make sense, but maybe it does. I don't know. Does that make sense?"
As far as the different conditions I have (too many to list), some of them I want cures for and some of them I don't. But I've thought hard even about the ones I do, because... it's hard to explain, but even when you hate something, it's often attached to something good, and you have to weigh whether you want to remove that good thing with the bad or not. Using a wheelchair doesn't bother me much. Having to be in bed 99% of the time doesn't bother me much. So those things are barely if at all considerations when it comes to wanting a cure. For me, wanting a cure is more about pain, nausea, and malaise.
But even then, if something causes those things and is irrevocably tied to something important to me, I'm not going to want that cure. For instance, what if my migraines are tied to the perceptual systems that give me a highly sensory way of interacting with the world? In that case, I would take the migraines. If I could cure the migraines without touching the good parts, then I probably would. But even migraines have come with euphoria at times as part of the aura. Not to mention the way they may have affected my vision in ways that in turn affect the way I organize information in ways that are important to me... nothing is simple, nothing at all.
Even painful and icky conditions can have their rewards. The condition that puts me in bed all the time had an onset that did something to me. I don't even know how to describe what happened, and don't know quite why it happened. But it changed me, emotionally. It forced me to concentrate more on what's really important in life, rather than be distracted by pursuits that I could no longer do. I am not saying this in a corny way. I've never felt more alive. If I could go back in time and change it so that this never happened to me, I would not change one bit of it. Maybe I would take a cure, maybe I wouldn't, but I know that the health crisis that started all this had a profound and lasting positive effect on my outlook. I've talked to others who have had similar experiences. There's something real about these things that's very hard to describe if it's never happened to you. But so often I feel a source of genuine, non-superficial joy in life that I was less aware of before. Whatever this is, it's real.
So cure is complex even for conditions most people think are really, truly, wholly bad. Plus, some things are so woven into who you are on so many levels that if you take an honest look at yourself you can't make a neat separation between "condition" and "person". (This is very different from saying "You are no more than your defects" or something so don't take it that way, that's not how it's meant.) There's just so much that goes into this sort of choice for every individual person. That even when a choice seems highly unorthodox or "wrong" on some level (especially to people with simplistic views of disability), it needs to be respected.
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
24 Feb 2011, 8:05 pm
I just ask about what I'm curious about.
