The United States Senate Committee on Foreign Relations scheduled a hearing to discuss the Convention on the Rights of Persons with Disabilities (CRPD) for November 5th. We encourage you to contact your U.S. Senator today if you haven’t already and help by asking a friend or two to do the same.
We encourage you to attend the hearing to show your support if you can. For more information, please click here.
To learn more about the CRPD and what you can do to take action, please click here.
I wanted to write a poem Dr. Williams, but not on the page—nor on the bark of trees, not on clouds, not graffiti, nothing so much as the river itself. Let the green edge of yesterday be its ink. Let the interior speech of the Passaic slide backwards into history, a river’s promise unfouled by greed. Present tense. Sit. Beside. The water.
What does it avail a man or woman if life is only conditionally possible? How does one live? What ideas about life promise advantage? These were the topics my friend William Peace and I addressed two days ago at Syracuse University—haltingly, perhaps imperfectly, but mindful that “disability-life” is precious, dignified, and in peril.
Why stop? Elder-life is in peril; impoverished life; unmarried women with children—lives are in free fall all around us.
The GOP lead congressional investigation into the Obamacare website is laughable. People die for lack of affordable health care. One would think to hear Republicans they’re engaged when it comes to guaranteeing a shot at life for the weakest. As a paratactic exercise, read Sheri Fink’s new book Five Days at Memorial for a succinct, journalistic narrative of how ordinary citizens are consigned to live or die in a nation with a failing medical system and a broken social contract.
My friend Bill Peace was once encouraged by a hospital administrator (a “hospitalist”) to consider, seriously, ending his life. Disability lives are undervalued, unseen because they’re a metaphor for weakness and economic failure. Seeing that the hospital wanted to “off him” Bill called upon his large, Catholic family to visit him at all hours of the day and night—a demonstration of his social value. He also demanded his bed chart note his Ph.D..
Lost in the television “talk” is the critical fact that millions in this country have been designated “death worthy” —and unlike fatuous old Charles Grassley, who warned credulous voters Obamacare would “unplug Grandma” the life and death prospects for our nation’s most vulnerable citizens have actually been decided. Elder life and disability life are not on the lists of the saved.
My three day experiment in New York proved some things beyond joy. I was a “newbie” to guide dog land. I didn’t know one could go from exultation to misery in seconds. After walking in Central Park, Corky and I tried entering a mega-computer store on Sixth Avenue. I’d decided to buy a laptop pc. As we came through the door a security guard put his hand on my chest. “You no come in, no dog,” he said. I didn’t know it, but this moment would become a regular part of my life—routine as a six month checkup at the dentist’s office.
I pushed forward and the guard let go. We were in a dance of folly. He shouted in broken English, “no no no!” Customers stared. There was a fractional instant of silence. These instances happen ten thousand times a day in New York. Then the rush of ordinary noise returns. The nominal buzz. Ambient and reassuring. “No no no no!” He really was shouting.
Over time I’d learn to call these moments “culture shadows”—as strange and frequent as street shadows. I’d learn from social obstacles what I felt about life—a confirmatory, forgiving toughness. My civil rights and the security guard’s lack of education were equally delicate, equally products of culture. I didn’t know where the guard hailed from, but his accent sounded east African. How could he possibly know about guide dogs? He couldn’t. And the mega-store’s managers hadn’t given him information. All he knew was “no dogs allowed” and there I was, with a big assed dog. And so there we were: the unforeseeable amid the spontaneous and I saw it would be my job to foster dignity for both of us. They hadn’t taught me about this at Guiding Eyes; they’d given me a booklet with the access laws—a useful thing. I had the right to go anywhere the public went—but no one had mentioned emotional intelligence or how to engage in mediation.
I made Corky sit. Guide dogs sit at attention with poise. “Listen,” I said, softly, “get the manager. This will be okay.” “This is a special dog for the blind.” As the poet William Carlos Williams said, “no defeat is entirely made up of defeat”. I wanted to turn our misunderstanding into a teachable moment. “Let’s have a productive defeat,” I thought.
The manager was one of those men you see all the time in New York stores: sadder than his customers, red faced and put upon. He had a scoured toughness about him. He approached and began shouting at the guard. “Its a seeing-eye dog for god’s sake!” “Let him in!” “Sorry, sorry!”
My fight or flee rush was subsiding—I wanted all three of us to experience kindness.
I saw that transforming defeat meant having a vision of human dignity for everyone around me. I was in the proscenium arch of a dingy computer store and dignity was in peril. It would have been easy to say “fuck it” and look out for myself alone. I got into the store. But I didn’t feel that way. The guard’s name was Ekwueme. My name was Kuusisto. The manager’s name was Phil. “Listen,” I said, “dogs for the blind are not common, you don’t see them every day. This is Corky. She’s very smart.” I decided Corky could be the ambassador. I let my voice be kind. Ekwueme and Phil both pet Corky. A customer approached, said: “I’ve raised puppies for the guide dog school! Best dogs in the world!” Phil seemed suddenly pleased, as if he too was philanthropic, or could be. Ekwueme admitted he loved dogs. I’d been slow to feel good about my disability but I was going to make up for lost time. I was going to try to love myself and try like hell to love others. Maybe I could be an incidental educator along the way.
Well I haven’t seen a turn around like this (from last to first in one season) since Richard Nixon poisoned George Romney’s cream seltzer. David Ortiz not only crushed the ball almost every time he came up, but he also got on base more than anyone in World Series history including Lou Gehrig. Talk about “locked in”! What amazes me the most, is that the General Manager Ben Cherrington brought all these players to the team during the off season—Gomes, Victorino, Uehara, Ross, Drew, and Napoli. Genius! Even my sister who couldn’t care less about sports watched the game and called me when it was over, exulting about the beauty of the victory—first home win in the series for Boston since 1918. And silly old Fenway Park, painted, repaired, but still outdated and dented, and lovely—the last standing old time park. And Johnny Gomes! With his billy goat gruff beard leading them all in Walt Whitman hirsute pursuits! Walt would want to kiss every one of them! And Ortiz is entirely beloved in Boston in a profound way. There will be a street named after him. “Big Papi Cul de Sac!”
I drank two Sam Adams and then shifted to Diet Coke so I wouldn’t pass out in the 6th inning.
Its funny but I knew in June the Sox would be in the Series—the pitching was lights out all season, and the ability of almost everyone to make the big play was consistent and finally, so routine it was reliable. In my experience there’s a moment in every championship sports team where they go from being damned good to superbly reliable. I remember in ’85 seeing this with Larry Bird. But Bird ain’t got no street named after him and mark my words, there will be Ortiz de Sac.
Meantime Dad, things down here are execrable. Republicans destroying the middle class; racism out of the cage; toxic dumping and environmental crises; religious zealots; but hey, for one night we had a Red Sox wheelbarrow glazed with happy tears.
Body politics: how the body moves through the world. How the world responds to it.
Two months of physical therapy: Achilles tendonitis complicated by scar tissue from the surgery I had as a baby to correct my clubbed feet. After I do my required heel raises and stretches, I lie face down on a mat and my therapist pounds on my heel, rolls what she ominously calls “the stick” up and down my calf, scrapes my scar until it’s red and aching, until nausea pulses in my stomach. Then she attaches a device that sends medication into my leg with electrical currents. My calf bruises green after every session.
Before my surgery, my Achilles tendons were so short my feet were fixed in a pointed position, turned in, unable to flex. My father used to say about my birth, ‘And there you were! Two pointed feet!’
But mine is a minor birth ‘defect.’ As in ‘a shortcoming, imperfection, or lack.’ Related to ‘deficiency.’ Mine was easily ‘corrected.’
Body politics: routine prenatal testing can now include clubbed feet.
One presumption of prenatal testing is, of course, that some pregnancies shouldn’t be brought to term. That a fetus with certain characteristics—genetic variation, unsightly physical variation—should be aborted before birth.
So selective abortion can include fetuses with clubbed feet.
I have always been a radical supporter of a woman’s right to an abortion, no matter the circumstances. No questions asked. I have fought for this, marched for this, voted for this. And yet, I have to admit I wonder where we draw the line, where aborting a fetus who would die within hours of birth because of a catastrophic genetic mutation, for example, slides into aborting a fetus with clubbed feet. Or another example: aborting a fetus because she’s female. Sex as birth defect.
And yet, I have always assumed that if I were to have a baby, I would want prenatal testing for Thalassemia, the genetic trait I carry that is quite severe when inherited from two parents: a dramatically shortened life, regular blood transfusions, much physical pain. Have I bought into our conceptions of perfection, of normalcy?
What would it mean to hand select the ‘perfect’ baby?
The older I get, the more complicated everything seems. I’m grateful every day that my clubbed feet were corrected even though I cringe at the notion of ‘correction,’ at everything that word implies about the body—about my body.
And I have always liked my scars, even when kids at school made fun of me, said I should always wear tights to hide them, even when people stop me in line at the supermarket to ask what happened to me. I have always known they represent a thing of great beauty: movement.
But there I go—privileging movement. Many people live perfectly lovely lives without walking, without much, if any, movement. I have bought into it: our conceptions of perfection, normalcy.
Body politics: my father used to hold my feet in his hands. My mother supervised my stretching exercises.
‘10 fingers and 10 toes’ new parents always say in movies. Because a newborn body with eight fingers means what, exactly?
I return again and again to what it means to believe our lives are only worth living under specific societal conceptions of normalcy.
The older I get, the more time I spend in broad strokes of gray.
One ramification of prenatal testing is a slide toward something like eugenics, the erasure of people deemed different, not good enough. In some places, there is a clear increased rate of abortion when the fetus is female. Something like 95% of fetuses with Down syndrome in the US are aborted—even though people with Down syndrome live just as happy and sad and difficult and easy lives as those without it.
What does perfection look like?
This week at physical therapy: a teenager working to regain strength on his left side: stroke. An older woman on the stationary bike: knee replacement. A middle-aged mom: shoulder surgery. A FedEx man: back pain. A retiree who tells me to ‘really push’ myself: Parkinson’s disease.
Everyone, if she lives longs enough, will experience disability.
But some of us live our whole lives knowing its importance, its lack of importance. Knowing our bodies as different and good and lovely and corrected and needing correction.
Body politics: the body good enough. The body just as it should be.
We were having a long walk, unencumbered by the usual distresses, the business of hyper-ventilating, of not knowing step by step what might happen. For Corky there were balloons and attached children; old men feeding pigeons—really, they still did that!; teenaged boys playing hacky-sack; joggers; descending spools of blown waste paper; statues; topiary gardens; one man on a unicycle. And the squirrels of New York: toxic, fast, survivors…
Someone had a transistor radio playing Beethoven’s Fifth Symphony. Lovely, weird, tempered joy among trees.
I recalled Joseph Campbell once saying: “You must have a room or a certain hour of the day or so, where you do not know who your friends are, you don’t know what you owe anybody or what they owe you—but a place where you can simply experience and bring forth what you are and what you might be…”
For us, that place was now anywhere, anywhere at all…
With Evening
—for Ilya Kaminski
Comes tea in a glass—such a small thing.
Wind at the window—such a large thing.
& walk about, raising books & pages.
O I’ve had the feeling before—
life inside a life, like a worm
inside the thistle—writing
inside the thistle,
dear brother, poets say
heaven is unfastened;
call us soon,
we’ve kept our windows open.
**
Our last trial day in the city had to involve a long walk in Central Park. We entered somewhere around 72nd Street at Fifth Avenue and made our way to the boat pond. I was walking with my eyes closed. I’d always suffered from tremendous eye pain, and Corky’s great skill allowed me to rest them, and to largely give up on the desperation of residual sight. It was a late March day and the scent of new grass was in the wind. And from a distance we heard boaters laughing on water.
We sat on a patch of lawn. Sometimes I thought of our respective hearts, man and dog, as being wrapped in delicate cloth—by walking and exploring we were unwrapping them. A boy raced past on a skateboard. I wondered if he was unwrapping his own heart. I felt wonderfully goofy beside the pond, imagining the whole city unwrapping hearts and letting little cloths fly away.
Our three day practice session in the city was proving both our safety and our portable happiness. Now and then we had to stop someplace just so I could hug her—we found a bench outside of FAO Schwartz, the famous toy store, and I took her harness off and scratched her chest. And then she flopped over demanding a belly rub. And wouldn’t you know it? Two children from Germany, a boy and girl, about ten years old, accompanied by their mother—they wanted to help give Corky a belly rub…we had a spontaneous belly rub klatsch. Then more people came. A dozen. People unbeknownst to each other, drawn by softness and animal faith in the heart of a great city.
“Animal faith” was philosopher George Santayana’s term for instinctive belief, belief without any rational foundation. I’d begun using the term for my own purposes—walking with Cork was opening things for me and I was starting to feel a foundational confidence and openness I’d never known before. Perhaps it wasn’t rational. But maybe it was? Animals keep us alive to perceptions we’ve given up on. I’d always imagined this was true. Now I was experiencing it. The belly rub klatsch was a little, impromptu church ceremony. Late afternoon sunlight was reflected by tall windows. Children and adults were laughing. Corky had all four feet in the air and a wizened dog smile.
Planet of the Blind 