The ADA is Under Attack

The ADA is under attack.  Next week, the House will be voting on a bill, H.R. 620 that would undermine the protections of the ADA and take away the rights of people with disabilities.  Please call your Representative and ask them to #VoteNo and #ProtectTheADA

Here are talking points:
·         HR 620 will take away the civil rights of people with disabilities

·         It will make people with disabilities wait for up to 180 days for services that other people have immediate access to

·         The wait may be even longer than 180 days because a business that is making “substantial progress” toward fixing a problem can take even longer than 180 days

·         HR 620 will eliminate the need for businesses to be accessible until a complaint is received; there will be no need to make a business accessible until someone complains; that will mean many groups building new buildings, renovating buildings, opening new businesses will not make their services accessible

·         HR 620 shifts the burden of accessibility from those who offer services to the person with a disability; no other group needs to prove their right to access to publically offered services

·         We should not be gutting the rights of people with disabilities; if there is a problem, we should be limiting the actions of a small number of lawyers who are bad actors

·         HR 620 will take away the civil rights of people with disabilities; would we ever think about eliminating the rights of any other group of Americans? This is disgraceful.

And here is a fact sheet from our colleagues at Disability Rights Education and Defense Fund (DREDF) about the myths and realities of this bill.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

from “Letters to a Young Cripple” #4

Dear _______,

“Who the Hell am I?” you ask, as in “who appointed you to speak on behalf of anyone?” This is the best of all possible questions. I seized the talking stick long ago and you should feel free to grab it back any time you like. But don’t design to take it—plans are insulted destinies and one elemental aspect of cripple-talk comes from the marriage of impulse and necessity. Before you use your tongue, know whether it’s time to voice a requisite inclination.

It’s time for us to get close. For now let’s imagine we’re on opposite sides of a tiny island. It’s a Robinson Crusoe situation. I’ll be Friday and you can be Crusoe. Most would choose to be Crusoe I imagine—he has all the goods and boy does he ever have designs.

Older cripples, those who’ve lived some years before the Americans with Disabilities Act know something about emptiness. We grew up without Crusoe’s nails, drift wood, string, pulleys, guns, and whatever else he hauled away from his foundering ship. Cripple Island is, perhaps, not much of a place but Crusoe has accommodations, and moreover, like any son of industry he knows what to do with them. He builds little England.

Old Crips live in old haunts. In his new and exceptional memoir Hurricane Street Ron Kovic writes of life in the paralysis wards of the early 1970’s. Think “no civil rights” and without rights, think life without dignity—or better—the organization and assembly of life without dignity. Think horror:

Dr. M., the chief surgeon at the hospital’s Spinal Cord Injury (SCI) Center, walks past me. He is very tired but still he recognizes me and says hello. He has been in the operating room all day. His first patient, a paraplegic from D ward, had to have a flap put on his rear end for a bedsore that wouldn’t heal. There are a lot of them in here with that problem and sometimes the flap doesn’t take and they have to do it all over again. It can be very frustrating. Dr. M.’s second patient was not as lucky and had to have his gangrenous left foot removed. The nurses did all they could to save the foot but in the end they just weren’t able to. There are a lot of paralyzed guys around here with amputated legs. You can get a really bad burn and not even know it. I remember hearing a story once about a guy who came home drunk one night with his girlfriend and she filled the bathtub and placed him in it, not realizing the water was scalding hot. He got burned really badly and died the following week. There are a lot of stories like that and you try to never forget them. These are important lessons, and as horrible as it may seem, remembering them is crucial to our survival.

For nearly three months last year I was a patient here at the Long Beach VA hospital, healing a terrible bedsore on my rear end after a fall in the bathtub at my apartment. The accident happened not long after I had broken up with a woman named Carol who I first met at an antiwar demonstration in Los Angeles in the spring of 1972. Carol was the first woman I loved and the very first woman to break my heart. After we broke up I felt as if my whole world had fallen apart.

I was depressed and hardly getting any sleep at night. I remember putting a bandage over the bruise but it just kept getting worse. After a while the bruise became a sore and the sore an open wound, until finally I had to turn myself in to the hospital.

The last place I wanted to be was back in the Long Beach VA hospital. I hated the place. The conditions were atrocious, as bad if not worse than the Bronx VA in New York where I had been after I first came home from the war. The wards were overcrowded and terribly understaffed. The aides would sit in their little room at the end of the hall drinking coffee and cackling away as men on the wards cried out for help that never came. All the windows were tightly shut. The air was rancid, and I would push my call button again and again but no one would come to help.

The anger and frustration would build up inside me and I remember several times screaming into my pillow as I lay on my gurney until I was exhausted. I felt so helpless, so lost. During the entire time, in that depressing place, Carol never called or came down to visit me once. I felt abandoned, betrayed, and soon stopped shaving and began to let my hair grow long. I remember looking in the mirror one morning thinking how much I resembled Jesus Christ hanging from the cross. I thought back again to the Bronx VA when I had been stuck in that chest cast for nearly six months after breaking my femur, and how as I had lain on a gurney on my stomach I would paint pictures of the crucifixion with myself as Christ, and how they’d sent the psychiatrist down from the psych ward because they were concerned and I immediately stopped painting, afraid they would have me committed just like my Uncle Paul who had been beaten to death in a mental hospital years before.

For old crips there was always that need, a desperation to figure out how to live “for yourself.” Life was a terrifying mathematics—an algebra—part hope, part reaction, part belief. We’ll get somewhere with this chalk. Then they came and took the chalk away. “Chalk just makes you more hopeful,” they’d say. Accordingly old crips had to say, a la Beckett: “I can’t go on, I’ll go on.”

Maybe the better Beckett quote is: “Try again. Fail again. Fail better.”

Either way none of the Old Crips had prerogatives. If you expressed yourself in the wrong way the next stop was the mental hospital, make no mistake. One of the great backstories in American poetry is the fact that Allen Ginsberg’s iconic poem “Howl” represents his bold refusal to be quiet about the effects of forced institutionalization. (Ginsberg had been sent to a psychiatric hospital because of his queerness and his passionate intensity.) Yes, none of the Old Crips had “privilege”—unless screaming into your pillow can be understood as a private Theater of Cruelty.

Old Crips had to incorporate and gestate psychological, corporeal, and existential densities, literally hour after hour. In one of my college notebooks (written just three years after my own stint in a psychiatric ward) I copied these lines from Simone de Beauvoir:

Regardless of the staggering dimensions of the world about us, the density of our ignorance, the risks of catastrophes to come, and our individual weakness within the immense collectivity, the fact remains that we are absolutely free today if we choose to will our existence in its finiteness, a finiteness which is open on the infinite. And in fact, any man who has known real loves, real revolts, real desires, and real will knows quite well that he has no need of any outside guarantee to be sure of his goals; their certitude comes from his own drive.

 

This is the essential problem, often expressed to me by Old Crips: young cripples believe in an outside guarantee—for what after all is a civil rights law but a warranty, a certitude, a “writ” that should alleviate us from want? That is exactly what the ADA should be. That is precisely what it ain’t.

As disability rights activist Bob Kafka notes: “If we believed that ADA is the power and we are the recipients of its strength, rather than we are the power and ADA is a tool for us to use, I fear we may still have a long way to go.”

The ADA isn’t a warranty and worse, Old Crips will tell you, the power doesn’t reside there, just as it doesn’t reside in a hammer. The strength is in your mind. Easy enough to say, but harder to enact, especially if you believe there’s an ADA Geek Squad that will ameliorate the obstacles.

We like the ADA. But it hasn’t changed things as much as we’d predicted. If in fact we’ve a long way to go, read more tough people. Kovic’s new book is a good place to start.

 

 

 

 

Disability, Airplanes, and My Life as an Object…

In her review of Jessica Valenti’s memoir Sex Object (see it in The Nation here) Lauren Duca suggests the book asks, “Who would I be if I didn’t live in a world that hated women?” Inevitably the most disarming questions are drawn from years of public struggle and I for one plan to read Valenti straight off. (I’ve long admired her work in The Nation and The Guardian.)

Just this past week, as I flew across the US on Delta Airlines I chanced upon not one, but two passengers who absolutely refused to sit next to me because I had a guide dog. Their requests to be reseated were directed to the flight attendants with outrage and sneering, so much so that other passengers were appalled. And I thought: “Who would I be if I didn’t live in a world that hated the disabled?”

As I say, I’m looking forward to Valenti’s take on the sufferance and diminishment that accompany her embodiment—suffuse it, cincture it, inculcate it. Instill, implant, impress, hammer.

I like Judith Butler’s sentiment concerning emotional intelligence. She wrote: “You will need all of those skills to move forward, affirming this earth, our ethical obligations to live among those who are invariably different from ourselves, to demand recognition for our histories and our struggles at the same time that we lend that to others, to live our passions without causing harm to others, and to know the difference between raw prejudice and distortion, and sound critical judgment.”

I tried to hold the difference between those passengers who threw their hissy fits and my own obligation to be a person of sound judgment. I kept silent as the angry French business woman and the angry Asian business man demanded redress. Let’s be clear: the dog was not in their way.

Perhaps they were allergic to dogs. But this they did not say. Such a response would have been understandable.

They were evincing raw prejudice.

I kept silent.

I kept silent as the flight attendant promised they would receive a thousand miles of free air travel if they’d just agree to move to other seats.

They didn’t want other seats. They wanted their outrage.

Presumably Valenti’s memoir covers such moments: one is expelled from the sphere of desire.

You were the wrong kind of date.

And then there’s the rub: “How can one who doesn’t love him/herself expect to be loved?”

One simply has to practice reality from the fringe.

The fringe after all, is just as real as the center.

Is it my job to make the fringe the center?

Can I live peaceably on the fringe?

How do the original words, original thoughts imagine the margins? Weren’t we always nomadic?

Didn’t we take the fringe with us wherever we went?

It’s cosmopolitanism hates your variant gender, disability, pigment.

Oh but I’ve met cruel people in the countryside.

Thoughts in my head while listening to the antithetical faux umbrage of snobs.

I think they were angry because I was sitting in an expensive seat.

“What would I be like if I didn’t have to endure this prejudice daily?” I wondered.

Trouble is inevitable in all political situations, and just try to find an unpolitical cry.

 

Thank you, Christopher Bowsman

Thank you, Christopher Bowsman, for your kind words  ~sk

Steve Kuusisto on Poetry and Disability Studies

The Blackwell Inn was a big lavishly decorated hotel, and the conference was held in the ball room. I saw Steve Kuusisto moving up to the podium and talking to his dog “Come on, girl.” Moving in unison with the dog up to the podium. He introduced himself, his guide dog Nari, (Who “by the miracle of frozen sperm” is from his last dog), and began to explain disability as a mode of perception. The ability to re-claim “embodiment” (How our bodies are perceived.) is as ancient as language, he argues.

Steve was funny, articulate, and poetic. Frequently, he made allusions to other poems, or modes of perception that “re-claim embodiment.” That is, he examined the inner world of disability, its lived experience, in contrast to being defined as reified (lacking. Blindness being the absence of light. Deafness being the absence of hearing, etc. In his poetry, he describes his dog as being much more than a dog; that sometimes they are one being. This is actually how I feel about my wheelchair too. He tells stories of watching drunken men in wheelchairs eating flowers, and wrote about that poetically. Through poetry, Steve gains insight and a unique epistemology.

Continue reading post on Christopher Bowsman’s blog, Through Alien Eyes, The Sci-fi Worldview of Chris B.

Essay on the Politics of English Clarity and Them Folk with Disabilities

 

One can read theories about stigma, or about the cultural formations of difference. These are necessary and instructive but as I grow older I can’t help but feel our efforts to understand disability as a marginalized human category cannot fully bear fruit without accessing the politics of clarity–an Orwellian thought to be sure but more evident to me now. Do not misread me: I believe in talking back to “the man” and believe in the ardor of revisioning dominant or pejorative narratives, how could a so called “disability” writer be otherwise? Yet I think that the rhetorics of opposition concentrate and then recaste difference until the one who cries out is nearly exhausted with effort. Here I think of James Baldwin’s assertion: “A child cannot be taught by anyone who despises him, and a child cannot afford to be fooled.” That there are those who despise people with disabilities seems evident even some twenty years after the passage of the Americans with Disabilities Act. That people with disabilities cannot afford to be fooled is a matter for the politics of clarity. 

The post-human age may yet give us some new places to roll or stand. The evolutions of cyborgian prostheses will likely help to break down the “normative-abnormal” dichotomy that has dominated both the theory and reality of disablement. Aimee Mullins and Oscar Pistorias have redirected the fashion industry which will inevitably embrace the postnormative. This is all too the good. Yet I think it’s a safe bet that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups. 

 

As I’ve already said, a person with a disability cannot afford to be fooled. The nominative and representational characteristics of invisible disability (or any condition that challenges dominant models of identity and attention) will require fresh language in a new century. Enter Orwell. The politics of language demand precision. In one of the best essays in English on the subject of language and physical difference, Nancy Mairs describes how she arrived at the decision to call herself a cripple: 

 “"Cripple" seems to me a clean word, straightforward and precise. It has an honorable history, having made its first appearance in the Lindisfarne Gospel in the tenth century. As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. "Disabled," by contrast, suggests any incapacity, physical or mental. And I certainly don't like "handicapped," which implies that I have deliberately been put at a disadvantage, by whom I can't imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism "differently abled," which partakes of the same semantic hopefulness that transformed countries from "undeveloped" to "underdeveloped," then to "less developed," and finally to "developing" nations. People have continued to starve in those countries during the shift. Some realities do not obey the dictates of language.” 

Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”–that Victorian term still tied to the factories of the Industrial Revolution–it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras–unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian–sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.    

As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.

 

S.K. 

 

Disability On Theory Road

–after Pentti Saarikoski

 

In the morning on Theory Road

Ableists and doctrineaire landscapers accosted me

Told me I was sily wanting to go places like everyone else

A little higher up under my apple tree a fawn and her twins nosed fallen fruit

Malice, dressed as a bureaucrat told me to give up

His forehead wavy, eyes quite specific, didn't much like the blind he said

I climbed the steps to the dance floor

Late summer clouds calling me

To dance with them but I lay down on my back

& listened as if my life depended 

ADA Restoration Act Clears Hurdles

While you won’t hear much about it from the national press the “ADA Restoration Act of 2007” cleared two House committees yesterday with only one opposing vote. (I’ll have more to say on that in a minute…) 

You can read all about yesterday’s proceedings and learn a good deal about the history  of the “ADARA” at the website of the American Association of People with Disabilities (AAPD):    

It is heartening that in a time of divisive squabbling in Washington the cause of Americans with disabilities has once again “shown the way” for true bi-partisan legislation and negotiation.

Disability is universal—it transcends race, class, gender, point of origin, sexual orientation, social status, age, fortune, and happenstance. Just so: the lives and concerns of people with disabilities are in fact the most logical point of “ethos” for a largely divided country to reassert its American values of fairness and decency.

While you wouldn’t always know it from the strident qualities of my prose I am at heart an optimist about the United States. I have lived to see kids with disabilities get a real chance in public education—when, not so long ago I was one of those “mainstreamed” kids who struggled without civil rights or appropriate educational supports. Yes, we’re a decent nation. We’ve come a long way in many areas. There’s reason for  a positive outlook. And yes, there’s also reason to stay strident. Rights and liberty are inconvenient for the ruling classes and we forget this at our peril.

“Aw, c’mon, Kuusisto, you don’t really think we have a ‘ruling class” in the United States, do you? I mean, don’t you agree that we’re a ‘classless society” etc. etc.?”

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