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.?”

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