Thirty for Thirty on the ADA” “Maybe Tomorrow”

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 Eight: “Maybe Tomorrow”

Disability is everywhere once you learn to look for it. Elvis Presley had continuous high grade pain the last ten years of his life. Samuel Johnson was legally blind, suffered from seizures, and may well have had a variant of Tourette’s Syndrome. The people in my neighborhood are touched by disablement. Some show it. Others do not. Normalcy, the belief in it, the animadversion to live it or else is the most destructive fiction in the world.

What does it avail me to say so? And why do I keep saying it?

In her excellent book The Contours of Ableism (an elegant title I think) Fiona Kumari Campbell imagines the structural and attitudinal dispositions against the disabled as residing within a telos or set of illusions that maintain the non-disabled identity. When I write against disability discrimination and the privilege indexes of ableism I’m engaging in the work of all disabled activists by asserting the truth of the matter:

“Ableism refers to: a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.”

So if there are so many disabled people around why does compulsory normalization still rule the roost? The contours of ableism are protean rather than strictly geometric. Fiona Campbell writes:

“Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in law), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.”

One of the interesting things about ableism is that whatever form it takes it occupies the future perfect. There will be time enough to make things right for the non-normals but not today. One may fair say “not today” is the motto of the thing. Non hodie in Latin. Picture a flag bearing the image of an indolent house cat. Not today will we question our assumptions about the majority of bodies on the planet. Ableism also refrains from saying “maybe tomorrow.”

As we contemplate the ADA @ 30 this is its signature, the stitching that holds the book together: “maybe tomorrow” has been retired.

We don’t say “maybe tomorrow” your disabled child can go to school.
Don’t say “maybe tomorrow” you can vote, go to a football game, go shopping.
We don’t say “you can’t attend college, not today…”
The ADA put a stake through maybe tomorrow.

This is in fact what people who hate the ADA are always most worked up about. They wanted their “maybe tomorrow” to last forever. Rather than see disabled customers and their friends and families in their shops and restaurants, small business owners banded together and cried foul—lead most notably by Clint Eastwood—we don’t need no stinkin’ ramps or accessible bathrooms in our tony little “shoppes”—sure the disabled matter, but not today, not now, not thirty years after the ADA, please. I wish I was joking. The Chamber of Commerce and its associated lobbyists have been brutal opponents of making commercial spaces accessible. Not long ago Dominos Pizza argued they didn’t have to make their website accessible to the blind. Not today. Not tomorrow. Perhaps some day. Dominos lost their case in court. They spent more fighting the blind and the ADA then it would have cost them to make a stinking website and app blind friendly. Their position was driven by raw ableism.

So the ADA says “maybe tomorrow’ has been retired.

Like racism, ableism depends on its ugly status quo. The ableist says, “I liked it when the disabled people knew their places.”

I know all the problems with the ADA. But it retired “maybe tomorrow” even though our opponents still wave it around like a discredited flag.

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.

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 

Of or Pertaining to Self Approval in the Age of Airlines

Mark Twain wrote: “We can secure other people’s approval, if we do right and try hard; but our own is worth a hundred of it, and no way has been found out of securing that.”

I like this quote but think Twain got it wrong. As a disabled man I know that I cannot secure other people’s approval so long as I insist on my rights or what we like to call “equal rights” and therefore the only way I can secure self-approval is by insistence. I insist that I belong at this meeting, in this room, on this airplane, in the voting booth, in your taxi, theater, hotel, swimming pool, university, library, railway, hell, even your amusement park.

I do not get customary approval for this entreaty and that is painful, at least on the inside where the barbs from others must go. I secure my affirmation from public resistance and I’ll take my public scorn with a twist of lemon thank you very much.

Last week I had two plane flights where—despite the laws of the land—the airline wouldn’t seat me and my guide dog or “seeing-eye dog” as they’re sometimes called in a place where we could fit. In each case I cited the applicable law (the Air Carrier Transportation Act) which makes it clear that they have to put me where we can fit. And in each case I was treated with absolute disdain and then hostility. The airline was Delta but it could be any one of them.

I was angry, humiliated, and yes, embarrassed for the flight attendants were not only inhospitable they made me the problem. We call that ableism in disability circles and like racism or homophobia it’s all about the knee jerk assumption that someone different is a lesser being and can be treated as such. This is why all bigotry hurts all others. If Chic Fil-A thinks it can object to queer people on a phony religious principle, then they can also object to me and my guide dog. Disdain carries a permission index that’s portable.

The Delta airlines flight attendants not only didn’t care that I couldn’t fit in their seat, they also didn’t care about the law—which says they have to move to a place where I can fit. They did not want to be bothered. The overheated cigar tube was being crammed with passengers, the public address system was smoking with imprecations to tag your bag because the overhead bins were full, please sit your ass down, we’ve got a schedule to keep, etc.

And there I was with a big assed guide dog who couldn’t fit under my feat. I crammed her head under the seat in front of me and sat with my own feet tucked under my ass like a chic woman on a divan. Try doing that for five hours.

The story is worse than this. A woman seated next to me was rude. She didn’t like sitting next to a dog. A flight attendant appeared, (remember, they didn’t try to reseat me) and in front of me asked her if she minded sitting where she was.

I can’t get the approval of strangers and I have no idea what Mark Twain meant. But I have my own satisfaction. I tell the truth. That’s what civil rights are for.

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 

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.