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.

Delta: Leave the Blind Alone

As a blind traveler who uses a guide dog I’ve flown a lot of places. My professionally trained dog lies under my feet and never stirs, no matter how long the flight. I’ve had four such dogs and all of them were trained by a top notch school in New York called Guiding Eyes for the Blind. Although going places with a disability isn’t always easy its generally achievable because protective laws are in place that guarantee the disabled rights of passage. In the United States both state laws—known as “white cane laws”—and federal laws, including the ADA and the Air Carriers Transportation Act have made it possible for blind people and their exemplary dogs to go anywhere the public goes.

In the world of service animals guide dogs are the gold standard. Trained to guide the blind through heavy traffic, watch for low hanging branches, take evasive measures when cars or bicycles run red lights, watch for stairs—even prevent their partners from stepping off subway platforms, everyone can agree that they’re the “few, the proud” just like the Marines. Yes, and they’re also trained to stay quiet and unobtrusive in restaurants and when using public transportation.

This canine professionalism is possible because guide dog schools spend tens of thousands of dollars breeding, raising, and training each and every dog. In turn guide dog teams have earned the respect and admiration of the public here in the United States and around the world.

Recently Delta Airlines, in an effort to curtail the appearance of fake service dogs on airplanes has issued a new requirement that actually hurts the blind. Delta is demanding that service dog users upload veterinary health certificates to their website 48 hours prior to flying. This is essentially a stumbling block—an obstacle designed to impede the blind while doing very little to halt illegitimate or phony service dogs from boarding flights. As a blind person who uses a tasing computer I can tell you that navigating websites and uploading documents isn’t easy. In fact its often ridiculously hard.

The blind and their amazing dogs are not the problem for Delta or other airlines. Fraudulent service dogs are a problem for sure, but really, do they think dishonest people who are already passing off their pets as professionally trained dogs will be unable to attach rabies certificates on a website? For sighted people this is a snap.

All guide dog users carry ID cards issued by the guide dog schools, certifying that the dog team pictured is legitimate and has graduated from a real service dog training program.

I don’t know what to do about the sharp increase in fake service animals on airlines, but I do know Delta and other carriers should leave the blind alone. We’ve earned our passage.

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 professorship in the Center on Human Policy, Law, and Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Learning to Be Afraid, A Manuel for Outlier Bodies

In her latest novel The Burning Girl Claire Messud has her protagonist, a young woman named Julia observe the following: “Sometimes I felt that growing up and being a girl was about learning to be afraid,” Julia says. “You came to know, in a way you hadn’t as a kid, that the body you inhabited was vulnerable, imperfectly fortified.”

Julia’s words passed through me like a scalpel. Talk about intersectionality! This fits disability, the actual living of it, to a T. All disabled people know this story—the crawling inner sense of contingency, the stares of appraisal, the shrugs, the outright dismissals that happen at any moment. One can add to this “early or late”—my first dismissal came when I was four years old. Here’s how I describe it in my forthcoming memoir about life with guide dogs:

When I was very small I didn’t know I’d meet people who wouldn’t like me until one afternoon, climbing stairs with my father, my hand in his, we met an elderly Swedish woman who lived just below us and who said, “Tsk, Tsk” because I was blind. I was only four and it was winter in Helsinki. This had been a foundational moment for me as such moments are for all sensitive children–it’s the very second we sense we’re not who we’ve met in the mirror, or having no mirror, we’re not who our parents say we are. Cruelty is one way we arrive. It comes without warning like branches tapping a window. “She’s a fool,” my father said as if that solved the riddle of human embarrassment.  

The body I inhabited was vulnerable.

“Imperfectly fortified.” Black bodies, trans bodies, diminutive bodies, let’s be democratic about the matter. So great is the stranglehold of tacit agreement about embodied value, anyone who’s not white, male, at least of average stature, lacks the automatic agency that opposes the vulnerability Julia describes.

When Trayvon Martin, the American teenager who was murdered while minding his own business, who was shot to death for being black in a gated community, I wrote about the tragedy from a disability perspective. I said, among other things:

I know something about being “marked” as disability is always a performance. I am on the street in a conditional way: allowed or not allowed, accepted or not accepted according to the prejudices and educational attainments of others. And because I’ve been disabled since childhood I’ve lived with this dance of provisional life ever since I was small. In effect, if you have a disability, every neighborhood is a gated community. 

Last week the Rev. Al Sharpton counseled Trayvon’s parents that the engines of disparagement would start soon–that Trayvon’s character would be run through the gutter. He was right. And he was properly forecasting what happens whenever a member of a historically marginalized community speaks up for “blaming the victim” is a handy way of sidestepping issues of cultural responsibility. In a way, isn’t that what “gated communities” are all about? Aren’t they simply the architectural result of cultural exceptionalism? Of course. But as a person who travels everywhere accompanied by a guide dog I know something about the architectures and the cultural languages of “the gate” –doormen, security officers, functionaries of all kinds have sized me up in the new “quasi public” spaces that constitute our contemporary town square. I too have been observed, followed, pointed at, and ultimately told I don’t belong by people who are ill informed and marginally empowered. Like Trayvon I am seldom in the right place. Where precisely would that place be? Would it be back in the institution for the blind, circa 1900? Would it be staying at home always? 

Now the forces of revision are saying that Trayvon was a violent pot smoker. Forget that pot smokers are generally not violent and that the vast majority of teens in America have tried it–forget that it’s not a gateway drug. Forget that having been suspended from high school for minor marijuana possession isn’t an advertisement for criminal psychosis. (Didn’t we dismiss that stupid idea along with the film “Reefer Madness” some thirty years ago?) The reality here is that Trayvon is being predictably transformed from an ordinary kid into an aggressor. The evidence doesn’t support this. He was stalked and threatened and the efforts in recent days to recast him as a crazed gangsta are predictable and laughable. But I’m not laughing. I too was an “outsider” teenager. My place in every social and public environment was always conditional. Hell, I even smoked marijuana as a form of self medication. I’m not ashamed of the kid I used to be. I’m not ashamed to count Trayvon Martin as my soul mate. 

There’s a war against black men and boys in this country. There’s also a backlash against women and people with disabilities and the elderly. The forces in all these outrages are the same. The aim is to make all of the United States into a gated community. On the one side are the prisons and warehousing institutions; on the other side, the sanitized neighborhood resorts. I hear the voice: “Sorry, Sir, you can’t come in here.” In my case it’s always a security guard who doesn’t know a guide dog from an elephant. In Trayvon’s case it was a souped up self important member of a neighborhood watch who had no idea what a neighborhood really means. I think all people with disabilities know a great deal about this. I grieve for Trayvon’s family. I haven’t been able to stop thinking about him and will never forget.  

Learning to be afraid, to sense your vulnerability, is to recognize, in whatever neighborhood or room your very immanence is bothersome at best—and really that’s the best you can count on. From bothersome you descend quickly to the status of a foreign problem, and then to mild or medium hot threat or worse. Consider the tragedy of Keith Lamont Scott; consider Charleena Lyles; Brian Claunch; Robert Ethan Saylor; consider that half of the people killed by police in the United States are disabled.

One wish of mine is that Americans will pay attention to the fact that all outlier bodies have been essentially criminalized—that is, the foreign body is now imagined to be illegal.

Jerry Lewis and “The Crippler”

In his book “Telethons” the disability historian Paul Longmore observed that in the late twentieth century, “nearly everyone who talked about telethons—whether they were defenders or critics, including most disability rights activists—focused on the MDA Telethon and its host, comedian Jerry Lewis. That was not surprising. In the intensely competitive arena of televised charity solicitation, the MDA’s became the most successful and praised of the programs, as well as the most scorned. In 1989 National Public Radio’s Scott Simon described it as “the largest, single-day, private fundraising effort in the world, an extravaganza of entertainment, and fundraising sensation.”

The scorn came from the growing disability rights movement which saw Jerry Lewis as a pitchman for pity and whose language “about” disability presented children as hostages to illness without seeing disablement as merely one factor among many that constitute a life. Now that Jerry Lewis has passed away, as we think about his long and remarkable career, it’s altogether proper to reflect on the damage he did to real disabled people. The harm wasn’t just his—the charity industry in the United States came of age through a combination of forces, a new mass media, first film, then broadcasting houses, direct mail appeals, and a post-war cult of nearly instant celebrity, the likes of which hadn’t been seen much before World War II.

In fact, Dean Martin and Jerry Lewis had become famous overnight. They went from performing in second string nightclubs to the famed Copacabana within weeks, and then to Hollywood. Martin was a lounge singer from Steubenville, Ohio, a town of blast furnaces along the Ohio River. Lewis was a skinny, peripatetic, wisecracking Jewish kid from Newark, New Jersey, whose parents were minor vaudevillians and he longed to be on a stage, any stage. The war was over. America was still young. Anyone could be anything. Martin and Lewis were overnight sensations. Not since the Great Caruso crossed the Atlantic to sing opera in New York had we seen such a meteoric rise from poverty to stardom.

Jerry Lewis had grown up in a town of crippled kids—the nation was a country of crippled kids. Newark was a polio city. In his novel “Nemesis” Philip Roth describes Polio-Newark circa 1940 as a city where “a paralytic disease…left a youngster permanently disabled and deformed or unable to breathe outside a cylindrical metal respirator tank known as an iron lung—or that could lead from paralysis of the respiratory muscles to death…”

As a teenager attending the movies Lewis would invariably have seen the infamous “short” starring Raymond Massey as “The Crippler”—the sinister, looming shadow of polio who lurks at the edge of the schoolyard to capture innocent children. “Please, Mister! Let me go!” they’d cry.  Then: “Oh, I can’t move!” The theater lights would go up. Ushers came around to collect donations for the March of Dimes, the charitable organization co-founded by the President of the United States, Franklin D. Roosevelt, the nation’s most famous polio survivor.

Lewis saw disability as most Americans of his time did—as an implacable thief, a menacing, unnameable dread. When Martin and Lewis began in showbiz the disabled were not generally out in public. Polio victims were kept out of sight. Any disabling condition was understood as a dreadful thing. But fighting “The Crippler” meant displaying children. Roth writes:

“During the annual fund drive, America’s young donated their dimes at school to help in the fight against the disease, they dropped their dimes into collection cans passed around by ushers in movie theaters, and posters announcing “You Can Help, Too!” and “Help Fight Polio!” appeared on the walls of stores and offices and in the corridors of schools across the country, posters of children in wheelchairs—a pretty little girl wearing leg braces shyly sucking her thumb, a clean-cut little boy with leg braces heroically smiling with hope—posters that made the possibility of getting the disease seem all the more frighteningly real to otherwise healthy children.”

Paul Longmore describes the post-war emergence of televised charity programming:

“The telethon was invented just after World War II by private health charities as a tool to tap into the emerging mass medium of broadcast television. “Telethon” is a portmanteau word combining “television” and “marathon.” The first “television marathon” aired in April 1949 on behalf of the Damon Runyon Cancer Fund. Transmitted by the National Broadcasting Company (NBC) to twelve cities in the eastern United States and hosted by TV’s first major star, comedian Milton Berle, it was a broadcast sensation.”

A broadcast sensation indeed. Americans wanted to be generous to those in need and following the war people had disposable income for the first time in years. Helping the ill was understood to be unambiguously good, even a national trait.

This is how Jerry Lewis got his start with the Muscular Dystrophy telethon. His first was in 1956. HIs last came in 2010. What Lewis “got” about disability came from his formative years. He was being charitable. He didn’t want to hear from contrarians who felt there was more to disability than kids on crutches and cures. By 1981 the nation’s views about disability were growing more sophisticated. Longmore relates how Evan Kemp, a man with a neuromuscular condition, a Republican, and a civil rights attorney, and whose parents had helped to found the MDA, wrote in the New York Times that the telethon’s pity approach to fundraising” “bolstered social prejudice against people with disabilities.” Longmore writes:

“He (Kemp) accused it of dealing in stereotypes that only served to hinder their independence and alienate them from the rest of society. In addition, claimed Kemp, the telethon reinforced “the public’s tendency to equate handicap with total ‘hopelessness,’ ” thereby intensifying “the awkward embarrassment” of interpersonal interactions, as well as strengthening public fears and buttressing social barriers. Kemp called on the telethon to instead depict the countless examples of independent disabled people who worked, raised families, and actively participated in community life. This new message, he concluded, would “be a service to the disabled and to the country.”

Lewis didn’t respond kindly to his critics. He said famously on CBS “Sunday Morning” in response to hearing disability rights advocates had accused him of marketing televised pity: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

He also said: “It just kills me to think about these people getting publicity. These people are leeches. They all glommed on to being Jerry-bashers. What did they have before that? They’re disabled people who are so bitter at the bad hand they’ve been dealt that they have to take down somebody who’s doing good. There’s 19 of them, but these people can hurt what I have built for 45 years. There’s a million and a half people who depend on what I do!”I’ve raised one billion three hundred million dollars. These 19 people don’t want me to do that. They want me to stop now? Fuck them. Do it in caps. FUCK THEM.”

In Jerry Lewis’s case, thinking charitably and the charitable entertainment industry weren’t necessarily compatible. Defenders of Lewis, notably columnist Bob Greene, tried to assemble some scruples. Greene wrote: “Regardless of what you think of Lewis’ tactics and style, the one undisputed fact is that, for a few days at the end of each summer, he manages to make millions of people think about others less fortunate than themselves. You may be appalled at how he does it. … But you can’t stop thinking about what he wants you to think about… .”

In other words, “don’t shoot the messenger.”

The problem was—and is—that the disabled were not obstructive. The critics of Mr. Lewis asked for greater sophistication and nuance from his telethons. Jerry Lewis treated them with contempt.

Jerry wanted to call his poster children “Jerry’s Kids” and that was pretty much that. In his groundbreaking memoir “Miracle Boy Grows Up” Ben Mattlin writes about being an MDA “poster child” and points out how demeaned he felt, for even a kid knows when he’s being employed as a symbol, and a pejorative one at that:

“On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she’s the outgoing model. I should speak to her for tips about what it’s like to be a poster child.

I watch silently. The girl doesn’t do much, just stands there as a camera clicks. Then a stout man in a dull tan suit waves for Mom to bring me over. I’m parked in my wheelchair next to the girl. An even fatter man in shirtsleeves starts snapping photos of the two of us. Am I supposed to do something? Besides squint at the bright light, that is. After a while, we’re told we’re done. I wonder, is this what it means to be a poster child?”

The trouble is, that’s exactly what it meant.

Anderson Cooper and Sanctioned Scorn

The tide of Fascist contempt (evinced by Donald Trump’s sordid campaign for the Presidency)  has turned quickly to sanctioned scorn, something far worse than “blowing off steam” or simple exultation. Two days ago a hijab wearing woman was pushed down subway stairs in Manhattan; swastikas now appear everywhere from the University of Iowa’s library to a Jewish cemetery in upstate, New York. These are hate crimes. Moreover under the emerging administration they’re going to be business as usual.

I’ve been shivering. I recently experienced my own first bit of hate when a cab driver, (also the owner of the company) refused to give me a ride because of my guide dog. That refusal quickly became a matter of putting me in my place in the new “order” for he invoked Trump when I said this would become a news story, when I said I’m a writer and have written for many publications including the New York Times. “Trump is taking care of you people,” he said. He also said, “now I suppose you’re going to whine about your rights.”

In his canonical book The Rise and Fall of the Third Reich William Shirer described Hitler’s first meeting with Germany’s industrialists.

“Hitler began a long speech with a sop to the industrialists. “Private enterprise,” he said, “cannot be maintained in the age of democracy; it is conceivable only if the people have a sound idea of authority and personality… All the worldly goods we possess we owe to the struggle of the chosen… We must not forget that all the benefits of culture must be introduced more or less with an iron fist.” He promised the businessmen that he would “eliminate” the Marxists and restore the Wehrmacht (the latter was of special interest to such industries as Krupp, United Steel and I. G. Farben, which stood to gain the most from rearmament). “Now we stand before the last election,” Hitler concluded, and he promised his listeners that “regardless of the outcome, there will be no retreat.””

A sound idea of authority and personality. The struggle of the chosen—by which Hitler meant the people sitting in that room. The population at large? They’ll get what they get when we say so. Others—those who resist—will be eliminated.

Now in America it will be hard to directly eliminate opponents. Of course it will. But the broadcasting houses, the churches, the state governments, all can be turned toward the immediate work of reinforcing a narrow view of private enterprise, a slim view of acceptable citizenry, and certainly the cult of personality. My cab driver said so. He said it plainly. My people are now being taken care of by Trump.

On Sunday evening CBS ran a vicious piece about the Americans with Disabilities Act, essentially portraying it as a profound impediment to business. Lainey Feingold, a noted disability rights attorney writes at her website how 60 Minutes filmed a piece about the 25th anniversary of the ADA many months ago, a story which highlighted breakthroughs in technology and employment for the disabled. They never ran that story. Instead, Feingold writes, they ran an entirely oppositional piece:

Why would 60 Minutes decide to run a negative story about the Americans with Disabilities Act now, eighteen months after filming? Why craft a story that left out hours of film and interviews about effective ADA advocacy. There can be only one explanation. Someone at 60 Minutes wanted an anti-ADA piece to support Donald Trump’s anti-regulatory, anti-ADA, and anti-disability agenda.

When television networks air such programing they’re of course doing the work of a rightward galloping administration which already, even before it takes office is overtly engineering a collective rollback of civil rights.

Yes my people are now being “taken care of” by Mr. Trump. Except they aren’t, they’re being shoved to the side, slopped and hogwashed by complicit journalism. Anderson Cooper should be ashamed of himself, though one supposes he lives in such a perfect bubble he’s beyond social irony. Or perhaps he’s a single issue politician. Maybe.

Now you can bank on what’s to come: elimination of more voting rights, destruction of women’s rights, piece by piece, deportations and unlawful arrests, a significant boost to the school to prison pipeline, toxic water and air—the list is too long for a customary sentence in the English language.

 

 

 

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.