It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends.
— Prof. Dumbledore, Harry Potter by J. K. Rowling
Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.
Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.
Whenever she did this, she felt she was sitting at the center of agiant ear, listening to the world of the stars, and she seemed tohear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.
Those who still think that listening isn’t an art should see if they can do half as well.
— Michael Ende, Momo, 1984 Brownjohn translation
Momo listened to everyone and everything: dogs, cats, crickets, toads, even the rain and the wind in the trees. And everything spoke to her in its own way.
On some nights, when all her friends had gone home, she wouuld sit alone for a long time in the old theater’s large, stone rotunda listening to the deepening silence while the starry sky arched high above her.
Whenever she did this, she imagined that she was sitting in themiddle of a giant ear that was listening in on the entire cosmos, and she often thought she could hear soft but powerful music that went straight to her heart. On those nights she always had especially beautiful dreams.
Anyone who still thinks that listening is nothing special should simply try to do it half as well.
— Michael Ende, Momo, 2013 Zwirner translation
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 city’s classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of seaand 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 thestreets. 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 upwith 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 whodid 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.
— Harriet McBryde Johnson, Too Late to Die Young (bolded emphasis mine)
I tell my story not because it is unique, but because it is not.
— Malala Yousafzai (ملاله یوسفزۍ), Nobel Lecture
While those ancient mystics fascinate my scholarly sensibility, I never found Ezekiel’s vision particularly revelatory for my own spirit. But one recent Shavuot, Ezekiel’s vision split open my own imagination. Hearing those words chanted, I felt a jolt of recognition, an intimate familiarity. I thought: God has wheels!
When I think of God on wheels, I think of the delight I take in my own chair. I sense the holy possibility that my own body knows, the way wheels set me free and open up my spirit. I like to think that God inhabits the particular fusions that mark a body in wheels: the way ﬂesh ﬂows into frame, into tire, into air. This is how the Holy moves through me, in the intricate interplay of muscle and spin, the exhilarating physicality of body and wheel, the rare promise of a wide-open space, the unabashed exhilaration of a dance ﬂoor,where wing can ﬁnally unfurl.
On wheels, I feel the tenor of the path deep in my sinews and sit bones. I come to know the intimate geography of a place: not just broad brushstrokes of terrain, but the minute ﬂuctuations of topography, the way the wheel ﬂows. When I roll, I pay particular attention to the interstices and intersections: the place where concrete seams together uneasily, the buckle of tree roots pushing up against asphalt, the bristle of crumbling brick. I have come to believe this awareness reﬂects a quality of divine attention. Perhaps the divine presence moves through this world with a bone-deep knowledge of every crack and ﬁssure. Perhaps God is particularly present at junctions and unexpected meetings, alert to points of encounter where two things come together.
— Rabbi Julia Watts Besser, “God On Wheels: Disability and Jewish Feminist Theology” (Tikkun Magazine)
The tight weave of traditions that makes a comfortable hammock for some just as surely makes a noose that strangles others.
— Anneli Rufus, Party of One: The Loners’ Manifesto
During the first three or four months, my speeches were almost exclusively made up of narrations of my own personal experience as a slave. “Let us have the facts,” said the people. So also said Friend George Foster, who always wished to pin me down to my simple narrative. “Give us the facts,” said Collins, “we will take care of the philosophy.” Just here arose some embarrassment. It was impossible for me to repeat the same old story month after month, and to keep up my interest in it. It was new to the people, it is true, but it was an old story to me; and to go through with it night after night, was a task altogether too mechanical for my nature. “Tell your story, Frederick,” would whisper my then revered friend, William Lloyd Garrison, as I stepped upon the platform. I could not always obey, for I was now reading and thinking. New views of the subject were presented to my mind. It did not entirely satisfy me to narrate wrongs; I felt like denouncing them. I could not always curb my moral indignation for the perpetrators of slaveholding villainy, long enough for a circumstantial statement of the facts which I felt almost everybody must know. Besides, I was growing, and needed room. “People won’t believe you ever was a slave, Frederick, if you keep on this way,” said Friend Foster. “Be yourself,” said Collins, “and tell your story.” It was said to me, “Better have a little of the plantation manner of speech than not; ’tis not best that you seem too learned.” These excellent friends were actuated by the best of motives, and were not altogether wrong in their advice; and still I must speak just the word that seemed to me the word to be spoken by me.
At last the apprehended trouble came. People doubted if I had ever been a slave. They said I did not talk like a slave, look like a slave, nor act like a slave, and that they believed I had never been south of Mason and Dixon’s line. “He don’t tell us where he came from—what his master’s name was—how he got away—nor the story of his experience. Besides, he is educated, and is, in this, a contradiction of all the facts we have concerning the ignorance of the slaves.” Thus, I was in a pretty fair way to be denounced as an impostor. The committee of the Massachusetts anti-slavery society knew all the facts in my case, and agreed with me in the prudence of keeping them private. They, therefore, never doubted my being a genuine fugitive; but going down the aisles of the churches in which I spoke, and hearing the free spoken Yankees saying, repeatedly, “He’s never been a slave, I’ll warrant ye,” I resolved to dispel all doubt, at no distant day, by such a revelation of facts as could not be made by any other than a genuine fugitive.
— Frederick Douglass, My Bondage And My Freedom
I cordially dislike allegory in all its manifestations, and always have done so since I grew old and wary enough to detect its presence. I much prefer history – true or feigned– with its varied applicability to the thought and experience of readers. I think that many confuse applicability with allegory, but the one resides in the freedom of the reader, and the other in the purposed domination of the author.
— J.R.R. Tolkien, The Fellowship of the Ring
He kept discovering little flashes of Dick Hallorann’s personality lying around, and they reassured him like a warm touch.Stephen King, The Shining