And I’m still having trouble believing she’s dead. She was so fundamentally there, and now she’s not there. I’ve edited this to include a lot of the links that were missing last night, plus a quote.
Unspeakable Conversations is her most famous article.
The Disability Gulag is another.
Not Dead At All is another.
She wrote a book called Too Late to Die Young: Nearly True Tales from a Life. One excerpt is here.
She wrote another book, this one fictional, called Accidents of Nature.
She did a talk at the Holocaust Memorial Museum called Medical Ethics: Legitimizing the Unthinkable, and she answered questions like What is a disability? and Can we talk about cure?, Why as a kid did we protest telethons, and So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine….
New Mobility named her Person of the Year in 2004.
I’ll end this with a quote by her from Too Late to Die Young. I wish all autistic people who think that they’re non-disabled just because they find pleasure in being autistic, would read it and rethink what they think they know about the experience of disability. I think it exemplifies the core of what she was trying to do, what a lot of us are trying to do. And in the end it speaks for itself:
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 retarded 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.