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 1:

“Bicycle-Blind & Belabored”  

In the mid 1990’s just three years after the adoption of the ADA I decided to write a memoir about growing up blind before I had any rights. Nonfiction was suddenly all the rage. The critical and commercial success of books like The Liars Club and Angela’s Ashes brought the  memoir to the public’s attention. Where formerly “the memoir” had been the metier of statesmen or Hollywood has beens (I exaggerate only slightly) young writers were sharing stories about achieving self-awareness. The memoir was now about comic irony. Everyone could have his or her own bildungsroman and it was refreshing and by God there was a new law for cripples and overnight we had the public’s eye in new ways. Lucy Greeley’s Autobiography of a Face was brand new as I began my first book, Planet of the Blind. Memoir was fresh; the ADA was new; disabled writers had a chance. 

Literature aside this is what the ADA means: the disabled getting their chance. (A joke I love says we call the United States “the melting pot”  because  scum rises to the top while the people on the bottom get burned.) The disabled were always on the bottom, a fact made all the worse if they were poor, black, or if they were crippled women. America had always believed cripples belonged in asylums, “special” schools, that room behind the family garage—anyplace but the village square.  In her groundbreaking 1998 book Claiming Disability Simi Linton presented a new vision of the Parthenon marbles, a bas relief for what the ADA meant and means:

We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work — straightforward, unmasked, and unapologetic. We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure. 

It was a dazzling party. Even if disability scholars and writers didn’t quite know each other in the last moments before the world wide web, the ADA had sprung us; provided us with optimism; it gave us what Linton calls the dailiness of life. And along with that came stories. I wrote about being lonesome as a boy, about the hardships of blindness and the static miseries of shame. I described my mother’s terror of disability and how she pushed me to pretend to be normal—a story which is legion among the disabled and is all too often prevalent among people like me who are legally blind. We can’t see well enough to read books, recognize people, read signs—we see like abstract painters. My mother wanted me to go to a public school, not the dreaded school for the blind, and she pushed me into a very unfriendly world always demanding that I never reveal how blind I really was. That was life pre-ADA. Pre-inclusive education. No one in my parents’ circle believed the disabled could pursue pleasure unless they appeared normal. One of the first passages I wrote in Planet of the Blind was a memory about riding a bicycle in early childhood: 

I would conquer space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle—with nothing more than adrenaline for assurance.

How do you ride a bicycle when you can’t see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances—the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.

Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it’s a shadow, a hole in sunlight, and pedal straight through.

Here’s another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I’m alive in the wild carrot leaf!

I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I’ve been seen. Nothing with this boy must be amiss! He belongs on the street!

Now I’m on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I’ve barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.

In summary, if I didn’t look normal, if I wasn’t successful in the attempt, then putative strangers would come and take me to the “blind school”—my mother made certain I understood this. She passed her fears down to her altogether trusting little boy. 

Pre-ADA was about ugly charades, the “on fire” agonies, the humiliations of passing. God help you if you couldn’t. There would be no public square for you. By this I mean available, open, admissible space. If you were crippled on the street you were subject to cruelty. If you were crippled at the university they’d be sure to tell you to leave. 

As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable. 

I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with. 

Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore. 

I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Last year with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.

No one should have to risk death to prove he or she or they belong on the street as I had to so long ago. The ADA has driven a stake through that monster’s heart.

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.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

What a Dog Can Do

So I’m writing a book about my decade spent with “Corky” my first guide dog. When you live with a dog every day and travel everywhere with her you ask yourself questions.

I thought she was heroic. She thought I was hopeless. Question one: “what was Corky really thinking while guiding me?”

I could only surmise what was in her head. This would become a habit.

I imagined the exercise of man-to-canine dialogue was good for the mind. If you play the game properly it means you’re tough minded. For instance, a man thinks his dog is always looking out for him—she’s valiant, non-distractible. This isn’t entirely correct but he chooses to believe it. He needs to think it. After all he has his insecurities.

But he also knew his dog was a dog.

And so, walking in strange cities I thought about my investment in ideas about Corky versus Corky’s likely thoughts.

She watched cars. We were in Wichita, Kansas. I said “forward” and she didn’t budge.

A bus roared past and then a truck.

How had I not heard them?

She’d done her job—had stopped at a curb and had scanned all movement.

I was thinking about all the summers that might remain. How long might I live? What oceans had I yet to swim in?

Oh heroic dog! Who’d saved me! She was “Lassie” and “Rin Tin Tin” rolled into one.

We walked a few blocks and entered Wichita’s Botanical Garden and I asked Corky directly if she felt like Rin Tin Lassie. She wasn’t paying attention to me.

“She’s watching butterflies,” said a woman. “You’re talking to her, and she’s got butterflies on the brain!”

She had a smoker’s laugh, big and phlegmy.

“We have a lot of butterflies here,” she said. “This is the “Butterfly Garden”.”

“Ah,” I said. Smoker woman went away.

“Butterflies and trucks,” I thought, “are equally compelling in a dog’s eyes.”

A bright flash of color. Each appears at the margins of vision. Both warrant full attention. They create amplitude—both ends of the motion spectrum are the same.

“Dogs aren’t heroic,” I thought. “but they are alert, quick, and certain.”

Dogs say: “That’s motion and it’s mine.”

Sitting there amid the Wichita butterflies I saw that it takes some bravery to understand your dog’s view of things.

Once you understand this there’s a purity to it.

A dog sees all the dizzying, big eyed sparks of dailiness.

And doesn’t worry about it.

 

 

 

 

Jim Ferris, Laurie Clements Lambeth and Stephen Kuusisto Reading at Syracuse University

Disabilities as Ways of Knowing: A Series of Creative Writing Conversations: Part II

The Disability Experience and Poetic Verse

Reading by Poets Jim Ferris, Laurie Clements Lambeth, and Stephen Kuusisto

March 28, 2013
Reading 7:00 to 8:00 pm at Watson Theater
Reception and book signing from 8:00 to 9:00 pm at Light Work
SU Campus

Jim Ferris, Laurie Clements Lambeth and Stephen Kuusisto will be reading from a selection of their poetry, followed by a reception and book signing, for all members of the S.U. community. While this event is geared specifically to raise and support awareness among undergraduates, everyone is welcomed to participate in this exciting set of opportunities. This event will feature works from Beauty is a Verb: The New Poetry of Disability (Cinco Puntos Press) and launch Letters to Borges (Copper Canyon Press), where “best-selling memoirist Stephen Kuusisto uses the themes of travel, place, religion, music, art, and loneliness to explore the relationship between seeing, blindness, and being. In poems addressed to Jorge Luis Borges—another poet who lived with blindness—Kuusisto leverages seeing as negative capability, creating intimacy with deep imagination and uncommon perceptions” (from http://www.stephenkuusisto.com).

American Sign Language (ASL) interpretation will be provided during both the reading and the reception/book signing. Communication Access Realtime Translation (CART) will be provided during the reading.

If you require accommodations or need information on parking for this event, please contact Radell Roberts at 443-4424 or rrober02@syr.edu.

This event is made possible through the Co-Curricular Departmental Initiatives program within the Division of Student Affairs, and cosponsorship by the Disability Cultural Center, the Renée Crown University Honors Program, the Center on Human Policy, Disability Studies, the Burton Blatt Institute, the Dept. of Women’s and Gender Studies, the Lesbian, Gay, Bisexual, Transgender Resource Center, the Office of Multicultural Affairs, the Slutzker Center for International Services, the Creative Writing Program, the Disability Law and Policy Program, the Disability Student Union, the Beyond Compliance Coordinating Committee, and the Disability Law Society.

As aspects of variance and diversity, disability cultures and identities enrich the tapestry of life on and off the SU campus.

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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 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

Just Released! Letters to Borges by Stephen Kuusisto (Copper Canyon Press)

Stephen Kuusisto Reads from Letters to Borges, His New Book of Poems

JUST RELEASED!  Best-selling memoirist Stephen Kuusisto uses the themes of travel, place, religion, music, art, and loneliness to explore the relationship between seeing, blindness, and being. In poems addressed to Jorge Luis Borges—another poet who lived with blindness—Kuusisto leverages seeing as negative capability, creating intimacy with deep imagination and uncommon perceptions.

If you enjoyed this reading and would like to listen to several more poems from Letters to Borges, it’s easy enough to arrange.  This FREE recording is yours to enjoy at your leisure, preferably from your favorite cozy chair with a cup of coffee or a nice glass of wine in hand. Simply fill in the “Join me for a cozy ‘fireside’ poetry reading…” form found to the right of this blog post or make your request below.

REVIEWS:

Seth Abramson Seth Abramson, Poet

Kuusisto’s is a life one wants to know, detailed sparingly by a man one wants to know, inscribed in a generic form one finds oneself not merely compelled but honored to read. Letters to Borges is highly recommended for those who still find honor and beauty in both simplicity and–can it be?–actually having something to say.  Read more of Seth Abramson’s reviewfrom the Huffington Post,  Huff Post Books, November 2012


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If we account for Kuusisto’s restricted sight, the brilliance of his verse acquires deeper resonance, for his work imagines a realm between sight and sound composed of the sensory stimuli we all know and recognize, but split, fractured, and juxtaposed to inhabit the mind’s ear of his readers, a feat unique to this truly gifted poet. — Diego Báez, Booklist Advanced Review

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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 has just been released.  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
 

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The Memoir on Steroids

The New York Times reports that there is a new memoir scandal afoot in American publishing.

At issue is the discovery of what appears to be an entirely fictionalized memoir by a young woman who purported to have grown up in foster care and then to have lived a sub-rosa life among teen gangs in Los Angeles. Like the scandal involving James Frey’s notorious false memoir it turns out that this gangland narrative is simply fiction. 

As a teacher and writer of literary nonfiction I want to hold my head. My first instinct is to feel alarm for the art form that I love. Literary memoir is a genre that could be irreparably tarnished by repeated disclosures that something smells rotten in Denmark.

I worry especially because as a teacher I aim to encourage younger writers to write sophisticated and brave nonfiction. I worry because we live in an era when commercial publishing is in serious trouble. I fear that the avenues for the publication of autobiographical nonfiction could be significantly narrowed by the kind of malfeasance we’ve been seeing lately.

What’s worse in my view is that the “trouble” doesn’t lie with the genre. Though it’s tempting to blame “the memoir” in much the way we blame major league baseball for the steroid scandal, the problem doesn’t rest with the “game”—the difficulty lies in the demand for instantaneous and sensational profits.  Commercial publishing is driven today by a relentless, starving shark: a shark like all sharks—its momentum driven by sensation and the promise of instantaneous rewards.

It costs too much to run a baseball team or a publishing house nowadays. So you have to get a juiced up superstar to break a time honored record or you need a shocking and quasi-lurid book to make fast profits. Today’s corporate business model is entirely built on fast quarterly earnings.

Book publishing wasn’t always like this. In the good old days publishers could receive tax credits for the unsold books in the warehouse. But in the Reagan “go go 80’s” the tax laws were changed and publishers found that they couldn’t afford to keep books in print. In turn, the industry went from “publishing” to “producing”—and until the incentives are changed this is the way it will stay with literature and with baseball. 

Memoir isn’t the same thing as a Hollywood “kiss and tell” story. While an artful memoirist may disclose painful or disturbing facts about the personal past, the larger aim of literary consciousness is largely concerned with ambiguities of all kinds.

Another way to put this is that the true writer of memoir doesn’t overcome anything. A true memoir isn’t a self-help book any more than a poem is a manual on how to build a boat.

Yet in  commercial culture the Reagan go-go 80’s lead to the “Oprah 90’s” and both circumstances call for a tabloid friendly form of personal narrative—what I have come to call the “memoir on steroids” which, like the suspicious record keeping in baseball is entirely a function of fast profits.

No one would say that the memoirs of James Baldwin or Mark Twain or Mary McCarthy were sensational narratives about overcoming a singular and crippling one-sided misfortune.

Don’t blame the memoir for contemporary greed.

S.K.