Thirty for Thirty on the ADA: “Outside the Box”

Thirty for Thirty on the ADA

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Five: “Outside the Box”

If you love something, love it well even as you know its faults. I love the ADA but I also know its wishy washy like an uncle who ignores bigotry right in front of the kids because it’s a hard life.
I know you know what I mean. The ADA hasn’t exactly delivered on jobs for the disabled though it’s not really the old fella’s fault and tomorrow’s another day.

While we don’t really know how many disabled people remain unemployed a generally accepted statistic holds that the figure is around 70%. Now you might ask “70 % of what?” and then you might be surprised to learn that no one knows how many people with disabilities there are in the United States. We have to estimate. The estimate says the number is one in five Americans. The estimation game goes on: we judge two thirds of this phantasmal number are people over 65. Remember, we don’t know this. We’re guessing. I first learned about the imprecision statistic business when I tried to find out how many blind people there are in the US. The number is fungible, inexact, made up. Census takers went door to door in Baltimore and asked people if they could read a standard newspaper. From this a number was hatched. In turn that guess became a national model. Voila. There were one million blind people in the United States. Two thirds were over 65. Believe it or not these numbers are still often cited. They come from the old game: “how many fingers am I holding up?”

With a tip of the hat to Arthur James Balfour there are three kinds of falsehoods: “lies, damned lies, and statistics.” But there’s a fourth: the guesstimate. Now before you imagine I’m going to argue for a national database of the disabled let me be clear that disability is your own business and laws protecting privacy are essential in a free society. In other words, not knowing how many disabled people there are is not a bad thing. And yet, thirty years after the ADA it’s still the case that the disabled are horribly underrepresented in the work force. The ADA has not solved the fear among employers that greets every disabled job seeker.

As the old saying goes: “you can’t legislate morality.” Certainly getting people to do the right thing when they’re afraid is daunting. In her 2017 article on the obstacles to disability employment Megan Purdy wrote about the fact that disabled job applicants seldom get interviews:

“Hiring managers and HR pros worry that candidates with disabilities might burden the company in some way, or just make them and their colleagues uncomfortable. “There’s a lot of discomfort with people with disabilities. I think Oh, geez, someone with a spinal cord injury, I’m not sure they’re going to fit in here.””

She continues:

“In short, the lower response rate observed for candidates with disabilities is due to ignorance and prejudice. These are not challenges candidates can simply overcome with a great resume or interview, they’re bone deep and systematic biases that aren’t quickly eliminated by good data or better training. They’re driven by the sense that employing people with disabilities is somehow more difficult and costly than employing people without disabilities, and even more fundamentally, that people with disabilities are a burden.”

(Here I must interpolate: we don’t have good data and we certainly don’t have good HR training.)

The ADA opened the door for employment by introducing the concept of “reasonable accommodations” and the truth is that most disability related accommodations are inexpensive. Still, rationality doesn’t triumph over able bodied people’s fears about disablement. What if it’s catching? What if that wheelchair person needs me to help him with the bathroom? What if sign language is something I’ll have to learn? I’m afraid of blind people. I’m really uncomfortable with deaf people. Autism is just too hard for me to think about. I know we should have accessible websites but it’s too difficult to think about right now. (A common thing at universities.)

The ADA can’t erase stigma. No civil rights law can do this.

It can only say that discrimination is illegal.

Employers who are afraid of disability all say the same thing: “I’m sorry, we just filled that job.”

Back to Megan Purdy:

“PBS interviewed leaders at accounting firm EY, who are working to dramatically increase the number of people on the autism spectrum. While executives could cite logical reasons for the program – the unique skills that neurodiverse people brought to the team and the boost they provide to the company’s bottom line – their respect for their employees and belief in the program was also clear. They believe in their hiring plan and they value the contributions of all their employees. They have taken the time to do diversity training, not so they can check off that box, so that they can be better managers of people with disabilities. They bought in, understanding the problem, working to root out bias in their company culture, and diversifying their workforce.”

This is the advantage of the ADA: diversity includes disability and America, slowly, ever so slowly is learning how the disabled contribute in positive ways to the workforce. As a friend of mine, a blind attorney once said in an employment interview: “dude, my whole life is outside the box!”

Thirty for Thirty on the ADA: Essay Four “Among”

What do we mean when we say “thirty years since the ADA?” I think as disabled people we’re talking about a living document and not an artifact. There are three ways in which the Americans with Disabilities Act is not static and therefore keeps up with the times. One: it’s protections for people who lack the capacity to see, hear, walk, stand, speak, engage in normative modes of thinking (a phrase I detest) or who have invisible disablements (HIV, cancer, auto-immune conditions) are inclusive. AIDS patients were and are protected by the ADA though when the law was passed no one could have imagined this. Number one is connected to number two: disabilities are complex, often unforeseeable. The law makes room for this. Three: opponents may not like this, but the ADA says equal access means equal access and the law is strong enough to make it stick despite fierce and consistent objections from business groups, universities and corporations that have cried foul from the day President George H. W. Bush signed the bill into law. At thirty we can say the ADA is still very much alive and living with us. That’s the thing about civil rights laws: they have to be tough and equally imaginative. Diverse societies depend on imagination. Daily we see racist, homophobic, ableist, misogynistic, xenophobic people assert that critical thinking is for losers. This proves to be untrue in a nation of well written laws.

This leads to the sad truth that laws are not always enforced and can be subverted especially in provincial places. I recall in particular the ugly story of a blind woman in Iowa who was prevented from bringing her guide dog to a computer class “for” the blind. She filed suit in a local court which in turn saw no problem with the discrimination. I think of my late friend Bill Peace who was denied proper medical care at Yale University Hospital while attending a conference on disability. He had a heart attack. Because he was a wheel chair user they put him in a dark corner of the emergency room and left him alone for hours. I think you see where I’m headed: sectoral and isolated places still believe even thirty years after the ADA that it’s still 1910. I pick that date almost at random but it serves the purpose: the disabled were imagined to be fit only for the family’s tool shed or the asylum. In either case they were ignored. The ADA says we cannot be ignored. Plenty of people who do not currently have a disability think that having one is a monumental tragedy. When TV programs like “Dateline”feature a blind person they often say: “He was “Struck down” by blindness.” This old Victorian language still haunts every person with a disability.In his wonderful memoir “Moving Violations” John Hockenberry describes an encounter he once had with an airline hostess who, seeing that he used a wheelchair, opined that if she was in his shoes she’d probably have to kill herself. All people with disabilities can share stories like Hockenberry’s.

The ADA says our lives are worth living. Are disability lives not worth living? The long history of “abled” voices has said, and continues to say “no”–a “no” that has been complicated by pre-natal testing and divisive political rhetoric about the nature of what a qualified life really is. In 2005 the Terri Schiavo case demonstrated to disability rights activists that when it comes to protecting disability life, conservatives had more empathy and courage than neo-liberal Democrats (with the notable exception of the Rev. Jesse Jackson). The very idea that a disabled life is not a life at all depends both on the medical appropriation of curative utility (life with illness only possesses value in relation to its amelioration) and simple metaphor (disability understood as a ruined identity, see Erving Goffman). The dichotomies of spoiled identity have a long history on both sides of the Atlantic–eugenics, forced sterilizations, the “ugly laws”, institutionalization, and the Nazi “T4” mass murder of adults and children with disabilities. The pattern is one of distillation: disability, (post industrial revolution) is broadly conceived–has been conceived as economically unviable, hence lacking all capacity for the pursuit of happiness in the world of economic-biography.

The darker version of this is the resentment of social welfare (Hitler famously depicted people with disabilities as “useless eaters”). The utilitarian (Benthamite) position (Peter Singer) holds that the greater good of society must trump the needs of a minority in pain–”good” is understood as the potential for achieving pleasure. The Benthamite pleasure principle subborns life to economic life and forgoes the question of what constitutes individual autonomy when imagined outside of industrial labor. In turn it’s the right of the majority class, the “duty” of the majority class to debate the probable happiness potential and index of the minority. Many disability rights activists and scholars have pointed out the inevitable connection of Jeremy Bentham’s ideas (and Singer’s fealty to same) as the foundational principles of Nazism. There is truth to this because eugenics was driven by the principles of Bentham.)

The 21st century extension of disability as a cathexis of the utilitarian body and the medical model of physicality (that abnormality only has value in relation to its likelihood of cure) is now intensified by pre-natal testing. Mr. Singer would counsel parents to abort a fetus if its future birth would result in a child without arms and legs. In his view that child would have no likelihood of happiness and (more sinister of course) such a child would impede the greater happiness of society. Singer is no scholar of economies of scale or of their pre-history. The idea that a legless man might be a great singer or poet demands an appreciation of proto-industrial village life: the majority history of human kind. But enough of Singer.

A friend wrote me recently. She’s a young writer and a new mother of a little girl with a disability. She wrote because she’s experienced the insensitivity of her academic colleagues and friends who have opined that they couldn’t imagine raising a child with an intellectual or developmental disability. My friend has been shocked by the thuggish candor of these remarks. And by turn of the imaginative poverty of the conceptualization of a challenged life as no life at all. This is the marriage of utilitarian philosophy (absorbed through capitalism’s ubiquitous social rhetoric) and the medical model of disability which holds that physical difference without the prospect of cure is not worth enduring. We are living in creepy and reactionary times. And though I’ve been a life long liberal, I applauded the efforts of former Florida governor Jeb Bush to save the unimaginable life of Terri Schiavo. I’ve never felt any ambiguity about that. Perhaps my lifetime of nearly incomprehensible difficulty to live and stand among the able bodied has given me a strange capacity for steepened joy. Not an easy joy. Not a hot rod, drive your car fast joy, It’s the joy of living beautifully in the solitudes of challenge–something your average doctor or utilitarian philosopher can’t imagine because they don’t understand the vitality of pain.

So clearly part of our job is to help those who work in the public sphere and who have no experience of disability understand the vitality of lives that are lived in what I’m calling “the vitality of pain” because the phrase reflects rather accurately what all life is. 

Another part of our job is to make strong connections with groups and organizations that are leveraging the legislated rights of people with disabilities by insisting that states and municipalities live up to the Americans with Disabilities Act. The New Hampshire story above and recent developments in New York State offer some examples but there are more. 

The Justice Department’s recent comprehensive settlement agreement with the Commonwealth of Virginia resolved problems in the state’s system for serving people with developmental disabilities, including intellectual disabilities, and further resolved violations of the Americans with Disabilities Act (ADA). 

Under the ADA and the Supreme Court’s landmark decision in Olmstead v. L.C., individuals with disabilities have the right to receive services in the most integrated settings appropriate to their needs. The ADA and Olmstead require states to provide people with disabilities the opportunity to live and receive services in the community instead of in institutions.  

It’s clear that with sufficient stamina, persistence, and networking we can fight for the rights of people with disabilities. It is right to remember the words of Jim Ferris, a poet who often writes about disability from the experience of having a disability. He says: We are not signs,/we do not live in spite of/or because of facts,/we live with them,/ around them,/among

Among. If you are looking for a one word slogan that’s it. The ADA @30 is Among.

 

Thirty for Thirty on the ADA: Essay Three “Lyric Life”

Thirty for Thirty on the ADA

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay 3: Lyric Life

I was on a playground in Durham, New Hampshire. The year was 1960 and I was five years old. I had thick glasses and was smaller than my classmates. A big kid who I’ll call Rollie, who daily taunted me and called me “Blindo” approached me with a handful of dirt which he clearly meant for me to eat.

“You will eat this,” he said.

“It looks good,” I said. “Hey Rollie, have you ever eaten an acorn?”

Rollie held his dirt before him like a little pillow.

“An acorn?” he said.

“Yeah, they’re just like peanuts, really good, that’s why squirrels like them. You want one?”

“Sure,” he said. He held out his other hand and I dropped a neatly shelled acorn into his palm.

“Go on Rollie, its yummy!”

Rollie ate it. Then he turned red, and I mean red, not beet red or fire engine red—he was red as an unkind boy with his mouth swollen shut. Acorns are among the bitterest things on earth. And of course I only knew this because I’d tried one. I was a solitary kid. Spent a lot of time in the woods. Those were the days when a boy could still go to the woods.

Rollie was incapacitated. I don’t think he ever bothered me after that.

I still recall the thrill of my discovery. That language could render an enemy harmless was rousing.

I didn’t do a little dance. Didn’t brag about the matter. But I was on the way.

A lyric life, I think, is one wherein you can access feelings and then, by turn do something productive with them.

The simplest definition of a lyric poem is a poem that expresses the writer’s feelings.
Freud said: “Life as we find it is too hard for us; it entails too much pain, too many disappointments, impossible tasks. We cannot do without palliative remedies.”

One of those palliative remedies is lyric itself. One may think of this as causative intuition, a feeling that trips a switch and makes you sing when you should properly be weeping or running for your life. Again Freud: “Man should not strive to eliminate his complexes, but to get in accord with them; they are legitimately what directs his contact in the world.”

We are getting in accord. We are beside a country road picking edible flowers in the cool of the day. We do not pick edible flowers beside highways because there are pesticides in trafficked areas.

We remove the pistils and stamens before eating.

“Hey Rollie have you ever eaten Milkweed?”

“Rollie, you can trust me this time. It tastes like green beans.”

You will laugh at me, but I think of the ADA as green beans….

I think of it as the dictionary for disability assertion.

Now bullies ye will always have with ye. Of course.

Today’s disabled kids must also endure bullies.

Even now as a grownup I still endure them.

Not long ago I was called an “ignoramus” by a fellow faculty member at Syracuse University where I teach and run a program devoted to disability research. It is never appropriate to call anyone an ignoramus in an educational setting for the term’s antonym s are “brain “ and “genius” and its synonyms include: airhead, birdbrain, blockhead, bonehead, bubblehead, chowderhead, chucklehead, clodpoll (or clodpole), clot [British], cluck, clunk, cretin, cuddy (or cuddie) [British dialect], deadhead, dim bulb [slang], dimwit, dip, dodo, dolt, donkey, doofus [slang], dope, dork [slang], dullard, dum-dum, dumbbell, dumbhead, dummkopf, dummy, dunce, dunderhead, fathead, gander, golem, goof, goon, half-wit, hammerhead, hardhead, idiot, imbecile, jackass, know-nothing, knucklehead, lamebrain, loggerhead [chiefly dialect], loon, lump, lunkhead, meathead, mome [archaic], moron, mug [chiefly British], mutt, natural, nimrod [slang], nincompoop, ninny, ninnyhammer, nit [chiefly British], nitwit, noddy, noodle, numskull (or numbskull), oaf, pinhead, prat [British], ratbag [chiefly Australian], saphead, schlub (also shlub) [slang], schnook [slang], simpleton, stock, stupe, stupid, thickhead, turkey, woodenhead, yahoo, yo-yo…

As a disabled person I know full well what the delegitimizing effects of language can do to anyone who hails from a historically marginalized background but where disability is concerned the labeling I’ve described has a particularly specious and ugly history. Idiot, moron, half-wit, dolt, cretin are all familiar to the disabled. One would expect relief from these terms at a university. What’s particularly galling is that the subject I was discussing with the professor in question was ableism—namely that I’d said hello to him on an elevator, I, a blind man with a white cane, and he simply stared at me. No acknowledgement. When two students got on the elevator he lit up and talked breezily about how he hates snow. I followed him to his office and said that by not acknowledging a blind person he creates a social dynamic that feels off-putting and I wanted to discuss the matter. He became instantly contemptuous.

Now of course that’s because of the synonyms above. In this man’s antediluvian world view the disabled really shouldn’t be in the academy. Ableism is not only more pervasive than people generally understand its also more consistent at universities than is commonly recognized.

As for me, I’m an ignorant man to professor “p” for that’s what I’m calling him. “P” for privileged.

He doesn’t know it yet, but incapacities likely await him.

The good news is that when and if he’s discriminated against should that eventuality arise the ADA will likely protect him.

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.

Denied a Cab Ride, Grieving for Who We Are…

Tomorrow I’m heading to the University of Michigan to participate in a program on accessible publishing hosted by the UM Press and the University’s library. As a blind writer who teaches I know as much as almost anyone about how difficult it often remans to get access to books, journals, online publications, websites, software platforms—it’s a long list. So my hat is off the the folks in Ann Arbor for taking seriously the challenges of access for people with disabilities and putting together an ambitious workshop on accessibility.

In a mood of warm anticipation, packing for my trip from Syracuse to Detroit, I was wholly unprepared for the mean spirited encounter I had by phone with a cab company in Ann Arbor this afternoon. Just recounting what happened is an exercise so objectionable I’m forced to be brisk as the altercation was nasty.

I told the man who answered the phone I needed a ride from Detroit-Ft. Wayne airport to the U of Michigan. He was agreeable. Then I said I had a guide dog. He was disagreeable. He said:

“These dogs are stinky, they go to the bathroom, they’re dirty, I can’t have them.”

“Not the first time this has happened to me,” I thought.

“Guide dogs are allowed everywhere,” I said.

“I don’t care, now you’re going to tell me all about your rights,” he said. (Sneering, he was. Your rights…uttered as if I was some whiny baby.

“Well yes,” I said, “it’s a violation of state and federal laws to deny a blind person and his dog a cab ride.”

“I don’t care,” he said.

“You should care,” I said. “It will become a big story. Plus there’s a huge fine associated with this.”

“I don’t care,” he said.

“This will become a news story,” I said. “I myself write for newspapers like the New York Times…)

It’s hard to describe the effect this had on him. He began shouting that Donald Trump had won the presidency and “you people” (apparently meaning blind New York Times readers) “don’t matter anymore.”

He was absolutely vicious and crowing about how people like me don’t matter.

I said, “well, I’m going to turn you in to the Department of Justice.”

He said he didn’t care.

I hung up.

I went upstairs to tell my wife.

Five minutes later he called me back.

I answered.

He said, “I have allergies.”

He’d apparently shared his conversation with someone else. This was his effort to pull his leg out of a hole.

“It doesn’t matter, you still violated my civil rights,” I said.

He began abusing me again. Hot, geothermic mistreatment.

I hung up.

I posted his company’s name and phone number and a description of what I’d experienced on Facebook.

I didn’t know the man’s name.

He apparently received dozens of phone calls throughout the afternoon, including some from the press.

He’s now claiming victim status. He has allergies. He can’t be expected to take a passenger with a service dog.

The law is very clear on this matter. He doesn’t have to. All he has to do is find me a cab that “will” take me.

He chose contempt and mean-spirited bullying.

Some people on Facebook have messaged me to say he now regrets the matter.

Me too.

Whatever happened to saying, “hey, I know all about having a physical condition! I have one myself. I can’t help you but I’ll get you someone who can.”

Instead he went into a rebarbative snarl and wouldn’t stop.

He apparently told someone on FB that I ruined his day.

I have in fact filed a formal complaint with the Department of Justice and the Michigan Department of Civil Rights.

I’m still shaking. I want to close by saying I’ve heard promptly from the U of Michigan. They’re as upset as I am.

Is Trump’s ascendancy now a patented script?

If you hail from a historically marginalized group you know the answer.

 

 

 

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.

 

 

 

 

Huffington Post: Dogs in the Playing Field

I’m so very pleased to mention I’ve been invited to be a guest blogger for The Huffington Post. It’s quite an honor. Below is an excerpt published yesterday, December 4. I’d be grateful if you’d visit the site and if you like the post, please feel free to share it with your social circles.  Thank you!

Dogs on the Playing Field

Steve Kuusisto & guide dog, Corky

No one gets a free pass to public life — “public life” — the elusive goal people with disabilities strive for. While the village square is sometimes difficult to enter often a service animal can help. In my case I travel with a guide dog, a yellow Lab named Nira who helps me in traffic. Together we race up Fifth Avenue in New York or speed through O’Hare airport in Chicago. We’re a terrific team. But even 23 years after the passage of the Americans with Disabilities Act and 70+ years since the introduction of guide dogs in the U.S. life in public isn’t always friendly. Lately it seems more unfriendly than at any time since the late 1930s when the blind had to fight for the right to enter a store or ride a public bus. What’s going on?

Read more of Dogs on the Playing Field

Dog Schmooze

Professor Stephen Kuusisto is the author of Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir Planet of the Blind, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges has just been released. Listen to Steve read “Letter to Borges in His Parlor” in this fireside reading via YouTube. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

The Projected Image: A History of Disability in Film

 Kudos to all involved in making this happen.  It is so long overdue:

Turner Classic Movies (TCM) will dedicate the month of October to exploring the ways people with disabilities have been portrayed in film. On behalf of Inclusion in the Arts, Lawrence Carter-Long will join TCM host Robert Osborne for The Projected Image: A History of Disability in Film. The special month-long exploration will air Tuesdays in October, beginning Oct. 2 at 8 p.m. (ET).

TCM makes today’s announcement to coincide with the 22nd anniversary of the signing of the Americans with Disability Act (ADA) on July 26. And in a first for TCM, all films will be presented with both closed captioning and audio description (via secondary audio) for audience members with auditory and visual disabilities.

Read on…

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Professor Stephen Kuusisto is the author of Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir Planet of the Blind, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges, is scheduled for release in October 2012.  As director of the Renee Crown University Honors Program and a University Professor at Syracuse University, Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

When Bob Marley Saved My Life

Photo description: black and white photo of a smiling Bob Marley.  He’s standing outside and almost appears to be leaning on a guitar, the neck of which he’s holding in his right hand.

First let me say that anyone who has known discrimination also knows that going forward is steep. You have, after all, been told you don’t belong and worse, you’ve been instructed to get the hell out of town. As a blind person I’ve been in that spot throughout my life. Grade school teachers, high school principals, college professors, graduate school instructors–even a college president–have told me that because of my visual impairment I should go away. Perhaps the worst moment was in 1985 when I was enrolled in the Ph.D. program in English at the University of Iowa and two senior faculty along with the department chair told me I didn’t fit, that my need for extra time to complete assignments was ridiculous, and that I was a whiner.

This is a familiar story among people with disabilities. Even today (over 20 years after the passage if the ADA) only one in four college students with a disability will graduate. The unemployment rate for pwds is still estimated at 70%.

If you’re blind you can’t wait tables, drive a cab, or do most of the available jobs that are perfectly honorable. In 1985 all I could imagine was reading and writing vs. nothing. Nothing would mean living on Social Security Disability checks and moving in with my parents. If i embraced Nothing it would be an admission of failure so great that I would have to retire from my life, live as a kind of back room invalid, a prospect that terrified me since my mother was an alcoholic and slept all day with the shades drawn– would that be my life?

As it happened, I did move home and lived for quite some time in my parents’ basement. I had a beat up typewriter, an exercise bike, and a tape machine and that’s when I began listening to Bob Marley in earnest. I’d been gently listening to Bob ever since his first US album “Catch a Fire” appeared in 1973 but now I was soaking in his rare and utterly astonishing combination of rage and redemption, a combination you will not customarily find in the arts–a combo like milk and iodine. In poetry very few possess this–Yeats comes to mind and Nazim Hikmet, and Neruda. In popular music almost no one has Marley’s quality of the sword in the cloud–the rage is just rage or the milk is just syrup.

In my basement with the volume up I began working. Bob Marley’s voice and lyrics moved through me and I felt a half weightless sense of a pending disembodiment and then the authentic tears of deep deep discrimination salted with hope came to me. I could go on and on about the songs, the lyrics stitched from sublime wing shadows of the soul that fans the body, but it’s enough to say that Bob Marley remains for me the most authentic voice of “becoming” that I have ever heard.

Previously published on Steve’s other blog, Planet of the Blind

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Professor Stephen Kuusisto, blind since birth, is the author of Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir Planet of the Blind, a New York Times “Notable Book of the Year”. He has also published “Only Bread, Only Light“, a collection of poems from Copper Canyon Press. As director of the Renee Crown University Honors Program and a University Professor at Syracuse University, Steve speaks widely on diversity, disability, education, and public policy.

 

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.?”

Continue reading “ADA Restoration Act Clears Hurdles”