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Thank You Jeffrey Brown of PBS News Hour

Stephen Kuusisto to appear on PBS News Hour
Image: Logo of PBS News Hour

Tonight the PBS NewsHour will air a segment about my new book Have Dog, Will TravelThe piece features an interview with Jeffrey Brown whose reporting on literature and poetry is well known to book lovers across the nation. Jeffrey is also a poet whose first collection The News is available from Copper Canyon Press. In our time together we talked about poetry, civil rights, disability culture, dogs for the blind, the field of disability studies, and the power of literature to bring people together around social justice movements. And yes, there’s a lovely dog, Caitlyn, a sweetie pie yellow Labrador from Guiding Eyes for the Blind.

The program airs locally, in Syracuse at 7 PM. Check your local listings.

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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:
Amazon
Prairie Lights
Grammercy Books
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 @30: Essay Ten “Dear Friend”

Dear ADA@30:

There are so many things I wish you could hear but you’re made of wood. No wait that’s not quite right. A man can talk to trees. Hell, a man can even talk to a cheese. How do you talk to a law? 

We can only talk back to laws. Even while framing a law our speech sinks into the past. The illusion is that we’re going forward.

Dear ADA: you are a zen koan. We head to the future armed only with the past. Dear ADA we may have ideals but they’re nebulous and misty as when, answering a child’s question “what do you want for Christmas” you reply “oh, just give me universal peace.” 

ADA, now that you’re thirty, our wishes are still “claggy” as the British would say. The disabled are still in the fog. 

Some say it’s your fault but I’m not one of them. It’s not your shortcoming that some say you’re an “unfunded mandate” (a phrase so omnipresent it’s like spearmint chewing gum) and which means “we’re being forced to put in a disability accessible bathroom because we’re remodeling our local MacDonald’s franchise and there are no zero interest dollars by way of  loans, no help for us from “corporate” etc. 

It’s not your fault that those who call you “Old Unfunded” are the same people who oppose  federal and state social programs of any kind. 

It’s certainly not your fault that those you’re designed to protect are deemed burdensome and inconvenient by the Chamber of Commerce. 

If you’re judged by your enemies you’re doing good work my friend.

How do you talk to a law? 

The problem is that you’re latitudinarian rather than sectarian,  you’re Jeffersonian not Hamiltonian. You come from the liberal traditions of humanism. Perhaps you’re the last gasp of the enlightenment. For all I know better times are coming but in the rowboat I can’t see what’s ahead. We keep rowing. 

Dear ADA: the disabled and their allies are rowing just as you asked us to.

Yes, your foes still think you’re a newfangled guild of St. George, some utopian trick designed to ruin our nation’s currency by putting Braille on dollar bills. 

At a famous arts colony not long ago I complimented a staff member by saying, “hey, look! You put in an elevator so the disabled can get up and down the stairs!” “Oh,” he said, “they made us do that!”  

So much for disability as inclusion. You were again “Unfunded Mandate.”

It’s not your fault the abled classes still think cripples are inconvenient. 

It’s not your fault that Erving Goffman’s “stigma” sill permeates society. 

It’s certainly not your fault that as legal scholar Mary Anne Franks puts it, the US constitution is framed on a narrative faleshood: 

“America is built on a lie. That lie inheres in its foundational text, the Constitution of the United States, which begins in the false claim to speak of and for “we the people ” even as the majority of its population – in particular black men and all women – were denied access to the most basic forms of political participation. This act of simultaneous symbolic inclusion and material exclusion has never been fully acknowledged or confronted, which is another way of saying that it has never really ended. ”

Excerpt From: Sarat, Austin. “Law and Lies.” Apple Books. 

Dear Friend, these things are not your fault. 

You make it possible for the disabled to demand symbolic and material inclusion against so many odds.

The ADA @ 30, Thinking of the Fourth of July, Long Ago….

“Your vision will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes.”

—Carl Jung

I remember the day like it was yesterday. I’m talking forty years ago when I was 17. My parents put me in a psychiatric hospital in Rochester, New York because I was literally wasting away. Our family’s good natured doctor, a general practitioner, had no idea what was wrong with me. He was a good guy whose name happened to be James Taylor which I thought was rather amusing, like your family physician could be named Frank Zappa or Duke Ellington.

I had given up eating that year. It turned out I was good at this. If I was blind in school and the target of pranks by kids or even some cruelty from teachers, well hell, I could demonstrate complete proficiency at my own disappearance. I was into the “ars moriendi”–the holy art of dying and it’s no accident I knew the term, for George Harrison had released a song called the “Art of Dying” and I listened to it repeatedly. I was drinking one up of milk a day.

Outside my head the world went on being insistent and tangled, a place of blood and feathers. My mother was a serious alcoholic who also took a myriad of pain killers, a combo that often produced violent and psychotic effects. She would break furniture, fall down flights of stairs, throw dishes and glassware at my sister and I, or lash out with her feet, kicking like a horse. In such circumstances there is no domestic life, no evening dinner with the family, no conversation to speak of. My father, a college president, lived in his own world of denial. He had plenty of work to do. The war in Viet Nam was still happening, there were protests, Kent State was in the news. Life in the house and life outside the house balanced in a seething electrolysis of panic. None of the adults in my circle appeared happy. And as a teenager with a disability I had no kinship except pot smoking with the other unaffiliated and sad kids who would let me into their circus tent. Those were the years when everyone felt like the world left to a free thinker was just a carnival sideshow tent. We smoked pot under an elevated highway: monkey boy, banana girl, bearded lady, stilt man, dog face.

After getting stoned under a bridge or behind a tomb in the cemetery I’d go home, hoping my parents were in bed. My mother was a night drinker and there was never any guarantee she’d be asleep. I had a system: I’d enter the house through a door in the basement, creep up the stairs, and listen for any signs of activity. Sometimes I’d be “outed” by our Siamese cat who heard me despite my efforts to achieve total silence. If my mother was awake she’d have those crazy eyes and the staggers. She would also be projectively paranoid, imagining that I’d been doing something demoniacal. Her rages weren’t reality based and could be dangerous. One night she stalked my younger sister with a knife. My sister and the cat hid in a locked bathroom while my mother, still holding the knife, begged her to come out.
I’ve written about this time in my life once before in my memoir “Planet of the Blind” and still, today, on the 4th of July, I’m flooded with a remembrance. Outside the window of my hospital room at the psychiatric facility was a flagpole. Boy scouts would come and raise and lower the flag.

I could just make them out with my dim vision: perfect lads, Norman Rockwell boys folding the flag like the honor guard at President Kennedy’s grave. And there I was on the nut house, all of 98 pounds, my spectacles thick as dishes, my body so cold I had to sleep under an electric blanket set to the highest temperature. I was the final thing in the sideshow: a blind, stick boy, fit only to be locked away. Not a boy scout.
I have to tell you: to this very day the 4th of July gives me the creeps. As Charles Bukowski might say: it’s a day for amateur drunks. But it’s also a day of excessive boy scouting, a role playing exercise wherein everyone salutes and marches up and down secure that the collective hubris of dressed up jingoism will demonstrate both loyalty to American values and also belonging to those values.
But what if the country is violent, intolerant, with undefended public education and impoverished social services? You see my problem? I survived my starvation period through multiple factors of luck and personal growth. But America is still trying to create more kids like my 17 year old self. I get the shivers just thinking about it.

Here are the things I had to learn:

How to stop hating myself.
How to forgive my parents.
How to eat.
How to believe in social progress.

Here are some of the things that have helped along the way, offered in no particular order:

Archetypal psychology and the work of Carl Jung, Marie Louise von Franz, and James Hillman. Walt Whitman’s “Leaves of Grass’. Poetry by a vast number of writers: Pablo Neruda, Federico Garcia Lorca, W.S. Merwin, Adrienne Rich, Audre Lorde, Robert Bly, Tomas Transtromer, Harry Martinson, Kenneth Rexroth, Gary Snyder, Emily Dickinson, Edith Sodergran, Pentti Saarikoski, W.H. Auden, Gregory Orr. I suppose the list is too long to go on. I think Gregory Orr’s book “Poetry as Survival” is important reading even if you’re not a student of poetry.

By my late thirties I saw that comparative suffering is a loser’s game. I learned never to say, “You don’t know what it’s like to be me” because even if it’s true, the assertion never opens a door. I learned by reading Helen Keller: “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.”

Through Al Anon I learned to stop trying to fix my mother.

Forgiveness is the hardest thing. I learned to forgive my parents. They were weak and wounded people who were utterly unsuited to parenthood. Their lives are not my destiny.

But I still can’t stand the 4th of July. I still hear that squeaking pulley and see those laughing boy scouts. We still have too many smug, privileged “plastic people” (as Frank Zappa would say) running around and crowing about how good and virtuous we are. I’m still not convinced.

Thirty for Thirty on the ADA: “The Dumpster”

It is perhaps ironic when a blind person says a picture is worth 1000 words. I studied poetry in graduate school and have built my life around a deep affiliation with language. Nonetheless here is a photograph which may defy customary language. We’re talking about the Americans with disabilities act at 30. This photo shows a large trash dumpster outside the central administration building of Syracuse University. The dumpster is located in a disability parking spot.

If I told you this is a rare occurrence at Syracuse University I’d be having you on. I have more than once complained about obstacles blocking crosswalks, dumpsters in parking spaces, retrofitted auditoriums without spaces for wheelchairs, inaccessible software. Despite this the problems repeat.

How is it that 30 years after the Americans With Disabilities Act this shit continues to exist not just on college campuses but in every element of the public sector?

It’s because the ADA is imagined as something for “other people“ and therefore it’s fit to be ignored.

We’re talking about white privilege as we should. Able bodied privilege comes from the same family. Inconvenience as deliberate action is never innocent.

Thirty for Thirty on The ADA: “Masks”

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 Nine: “Masks”

The American writer William Gass once wrote “culture has completed its work when everything is a sign.” It’s an ominous statement if, as I do, you believe culture moves like a river and is never still. Progress rides on currents. Still I’ll take Gass at his intended word—small “c” culture demands petrifaction, signs to rivet the mind and stop all thinking. Gass was warning us and his employment of culture has invisible quotation marks. One may also fairly say this about disability signs. They circumscribe the disabled, are sometimes a matter of envy among able bodied people who resent our perceived privileges, and though our signs are liberating, they can entrap us—they’re outdated the moment we post them, they don’t represent real humans. And who is really disabled anyway? It’s a 19th century word. It’s as outdated as antimacassars on horsehair chairs.

The ADA @ 30 cannot know this. It’s a living law but not your disabled neighbor. That the very word disability needs to be retired is unquestionable even as perhaps, the opinion may not be universally popular. We the disabled have fought too hard for our place at the table. We’ve fought too hard for our dignity and our sense of inclusion. Giving away the disability word would be foolish. Even a kind of defeat.

But one thinks of Willian Gass. Disability is an ossified sign and the public that imagines itself without disability (a fantasy if ever there was one….like believing in the tooth fairy) takes it to mean lack of capacity. The ADA @ 30 cannot fix this but its a real problem. The employer who turns away disabled job applicants believes culture has completed its work—thinks disability means lack of intelligence, stamina, gumption, power, potential, on and on it goes.

We change the universal wheelchair logo to make the wheelchair look more mobile, even a bit jazzy. I like it. Every wheelchair user I’ve ever known was both mobile and jazzy. This is true of blind folks whether they travel with a cane or a dog; true of the deaf who are poets of the vernacular and the sublime, sometimes making the the same thing. It’s true of my autist friends. They all know what Emily Dickinson meant when she said poetry makes the top of her head fly off. Autists move in spaces even NASA doesn’t know about.

Disability activists have claimed the world cripple to offset the cultural bone yard of the “d” word. As the late Nancy Mairs wrote” “as a cripple I swagger.” I’ve always liked this. I also admire the idea of “crippling” as a troubling of normal-think. Disabled lives are inventive lives; we are indeed “troubling” to normal people but we offer tons of imagination. Siri came from the blind and not your business as usual dudes.

I’ll take cripple over disability but main street still doesn’t see it. We need an expanded word for citizen as Black Lives Matter tries to tell us, as the Me Too Movement tries to tell us. I’m not abled or disabled, I’m a citizen, equal to you and you.

I like universal citizen.

This means I’m imagining citizenship as achievement, accomplishment, capacity.

Now I’ve a theory of sorts. Lost in the American culture war over wearing masks in a pandemic—lost in all the back flips from the right—lost in the arguments (such as they are) about the freedom to not wear a mask, the liberation from government control, the “don’t tread on me” flag waving—lost in all of this is a fundamental ableism, a sign, a William Gass irony. Masks make people look ill; appear disabled; resemble second class citizens. This is primitive ableist exceptionalism smothering science and common sense.

The disabled know all about it. I remember the cab driver in New York City who told me I was obviously a victim of voodoo. How else to explain blindness?

The cripples know we appear sinister. And the maskless believe they’ll be stuck forever in the land of broken toys if they succumb and do something that would save their lives.

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 Seven: It’s Life Itself”

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 Seven: “It’s Life Itself”

Disability life is life. It’s not a secondary or sub-sectioned existence. It is life. It’s life the way life is, on a day when you see the wild geese heading south and north at the same time. It’s life knowing music is cultivated time and knowing time heals nothing.

It’s that day long ago when I went to the typewriter repairman in Helsinki. I was blind and he was deaf. We communicated without social workers. It’s life.

And it’s walking in slow circles around an unfamiliar town just to get a map in your head and why not?

The disabled know what life is because they’re living it unmediated.
The disabled are not soft.
When they hold rulers they know what they can’t measure.
They know about scaring the able bodied always and not just on Halloween.
They piss off the righteous and politically narrow for they require straws.
Scarecrows love us for we give them something to look up to.
It’s life you able bodied narcissuses look up from your ponds.
It’s life with its dropped eggs and dirty windows.
It’s the side-eyed glances of children who can’t decide if cripples are cool.
Here it comes.

This is the ADA @ 30. Real life. Brought to you by an awakening.

**

In 1972 I took it into my head to end my life. It was easy: suicide was in the air. Today when people talk about the idealized late sixties and early seventies age of activism and protest, the “summer of love” or other trappings of youth culture they generally do so by way of nostalgia. But those were hard days and in my case daily life as a blind teen was becoming so difficult, in fact so preposterous, all I could do was self-medicate and starve.

No doctor or psychologist succeeded in diagnosing me. Anorexia was not widely understood in those days, and it was, in any case, thought to be a condition affecting girls.

They put meat on a string down my throat and took notes. I knew the obstreperous orderlies were Nazis. Knew the doctors were simpletons—knew the word itself described the children of simple people. I was 17 and in love with death and by Christ I wanted anyone who came in contact to see I was in love with it.

I loved Mick Jagger and John Lennon. Both were on heroin. Looking like you were at death’s door meant commercial success. Maybe if I looked that way someone would like me.

The gullible sad boy inside me was desperate for friends.

All that boy knew for sure was the adults were addled on booze and Nixon; the high school was a pipeline to prison; most of his teen acquaintances were cruel.

The gullible boy hadn’t read Kafka’s “Hunger Artist”. Hadn’t read Donald Justice’s poem “The Thin Man”:

I indulge myself
In rich refusals.
Nothing suffices.

I hone myself to
This edge. Asleep, I
Am a horizon.

When my “edge” became 98 pounds I started dreaming of life outside the body, dreams filled with clouds and snow. If there were people in my dreams I don’t remember them. Horizon dreams require no people—that’s one thing I learned from the unconscious in that bad year.

But awake I was easily deceived. I thought rock stars were tutelary angels. I imagined there were people in the world who would reach out to me, hold me close, cry out for my sake.

There were no such people.

My parents left me in the hospital, then drove home to drink whiskey.

The man in the bed next to mine spoke no English. He was from eastern Europe. He staggered from his bed, raised his gown, and proudly showed me his abdominal scar.

I remember thinking he’d achieved something.

One night I unplugged myself from the bed and wandered the halls of the hospital.

Strange to think a blind kid could walk the wards unnoticed but such things happen.

I heard weeping from many different rooms.

I heard nurses laughing from a stairwell where they’d gone to smoke.

My teenaged looted brain believed all sorrows were confirmatory.

Perhaps because I survived this period of my life the above awareness is why I hate Salinger’s Catcher in the Rye. Holden Caulfield is a liar. Anyone is a liar who thinks all sorrows are confirmatory. Or not a liar, but something more sinister, a projective delusionist.

Every day I meet my teen self. He’s still starving. I let him in.

Now the mystery is this: how did I get out of the Mick-Jagger delusional self-erasing, culturally confirmatory art of dying?

The psyche ain’t Hollywood. There was no single incident of transformation. And yet there was something “close” to that—a high school acquaintance had given me a book of poems by the poet Kenneth Rexroth. One day, holding the book an inch from my one “reading eye”—the eye I could use for close examination, though not for long, I read the poem “For Eli Jacobson” and began the tangled, slow, confused journey that all free thinkers must begin—that trip through the hard politics of our age, remembering the good souls who have come before, and yes, pledging our own merits, our own resolve to not give up. Here is Rexroth’s poem:

FOR ELI JACOBSON

December 1952

There are few of us now, soon
There will be none. We were comrades
Together, we believed we
Would see with our own eyes the new
World where man was no longer
Wolf to man, but men and women
Were all brothers and lovers
Together. We will not see it.
We will not see it, none of us.
It is farther off than we thought.
In our young days we believed
That as we grew old and fell
Out of rank, new recruits, young
And with the wisdom of youth,
Would take our places and they
Surely would grow old in the
Golden Age. They have not come.
They will not come. There are not
Many of us left. Once we
Marched in closed ranks, today each
Of us fights off the enemy,
A lonely isolated guerrilla.
All this has happened before,
Many times. It does not matter.
We were comrades together.
Life was good for us. It is
Good to be brave — nothing is
Better. Food tastes better. Wine
Is more brilliant. Girls are more
Beautiful. The sky is bluer
For the brave — for the brave and
Happy comrades and for the
Lonely brave retreating warriors.
You had a good life. Even all
Its sorrows and defeats and
Disillusionments were good,
Met with courage and a gay heart.
You are gone and we are that
Much more alone. We are one fewer,
Soon we shall be none. We know now
We have failed for a long time.
And we do not care. We few will
Remember as long as we can,
Our children may remember,
Some day the world will remember.
Then they will say, “They lived in
The days of the good comrades.
It must have been wonderful
To have been alive then, though it
Is very beautiful now.”
We will be remembered, all
Of us, always, by all men,
In the good days now so far away.
If the good days never come,
We will not know. We will not care.
Our lives were the best. We were the
Happiest men alive in our day.

For some, a minute comes when customary thought is broken up. The breaking can be like kindling or burglary—either way it promises a coming time. At 17 I hadn’t read much poetry. I’d read George Orwell plenty and accordingly I could guess at some of Rexroth’s footprints.

I had to read beneath an electric blanket set on the highest number. My ribs were clear, my skin translucent. I was a lonely isolated guerrilla. I didn’t yet know I was fighting for disability rights. Had no idea I would some day live in the days of the “good comrades”—my friends in the disability movement—too many to name here. But how lucky I am to know them. To know even our defeats and disillusionments are good because we can envision the inclusive world of dignity and peace.

Well I don’t know. How can you tell others, how can any of us tell others, we were lifted by things as small and true as elegies? That in our despair we saw, somehow, against all the odds the sky is bluer for the brave?

In the good days now so far away we will have worldwide disability rights.

We will not starve for lack of of knowing our lives were the best.

**

The ADA @ 30….

We are not experiments.
We’re not failed fashion statements.
We’re not fake characters in lousy novels. (“All the Light We Cannot See”)
We don’t need permission to vote, work, love, live.

The ADA @ 30…

We do need health care, jobs, inclusive higher education…

For we are life itself.
Not ideas about it.

Thinking of James Wright

I know, I know, there are those who call
Two horses in particular–
One is young and one is old
Though they think they’re brothers—
So that I, a blind man
Hear them like books read aloud.
No sentiment; no romance;
Each has his voice
Each wants a touch.
I run my fingers gently
Down their long foreheads
Lightly across their noses.
What are we waiting for?
What are we going to do about it
In the meantime?

Thirty for Thirty on the ADA: A Largely Lonely Triumph: Disability and Contemporary Higher Education

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 Six: “A Largely Lonely Triumph: Disability and Contemporary Higher Education”

I have lately been reading “Helen Keller: A Life” by Dorothy Herrmann. The following passage jumped out at me:

“It was largely a lonely triumph. As the twenty-year-old Helen soon discovered, college was not the “romantic lyceum” that she had envisioned. At Radcliffe, which had been forced to accept her as a student, she was more profoundly aware than ever before of her blindness and deafness. Only one of her classmates knew the manual finger language. Another girl had learned to write Braille, copying as a present Elizabeth Barrett Browning’s Sonnets from the Portuguese, but Helen never heard from her after graduation. The other students tried to be friendly whenever they saw her at a local lunchroom, and according to Helen, “Miss Sullivan spelled their bright chatter into my hand.” But she was painfully aware of the gulf between them, even though her classmates tried to bridge the gap by such lavish, awkward gestures as buying her a Boston terrier, which she promptly named Phiz. Presumably the dog would compensate her for what they were either too timid or too busy to give and what she secretly longed for: “the warm, living touch of a friendly hand.”

And here’s another revealing passage:

“Of Helen’s professors, only one, William Allan Neilson, who later became the president of Smith College, took the time to master the manual finger language so he could communicate directly with her. As Arthur Gilman was closely associated with the college, she and Annie were politely ignored by the rest of the faculty and administration, including the autocratic Agnes Irwin, the dean of Radcliffe, and the august Dr. Charles W. Eliot, the head of Harvard.

The snub did not surprise Annie, who was still furious about the plot at the Cambridge School to separate her from Helen. “I would much prefer to have people despise me as they certainly would if they guessed how full of distrust and contempt my heart is towards my fellow beings,” she wrote to Hitz. “I know it pains you to hear me speak in this way and doubtless it will hurt you still more to have me write it: but I want you to know just how detestable I am. I find people hateful and I hate them. Mr. Gilman seemed to me a fair specimen of our noble race. . . .”

“Radcliffe did not desire Helen Keller as a student,” Dean Irwin later explained to an interviewer. “It was necessary that all instruction should reach her through Miss Sullivan, and this necessity presented difficulties. They were overcome and all went well if not easily.”

Helen was wounded whenever her classmates passed her on the stairs and in the lecture halls without a sign of acknowledgment. Most of her teachers were “impersonal as Victrolas,” she recollected years later, and “the professor is as remote as if he were talking through a telephone.”

**

I have a recurring sense that the realities of campus life for people with disabilities may not have changed much when it comes to what we nowadays call “inclusiveness” in higher education. We have laws of course, and assistive technologies, and surely we do better at providing reading materials in alternative formats. Yet for all that I think that at far too many colleges and universities in these United States one will find that where disability is concerned the faculty and administrators are still “impersonal as Victrolas”. One need only visit the web site LD Online for an overview of the struggles that students with learning disabilities have faced and continue to face as they struggle to gain accommodations in the classroom. Or one can visit the U.S. Department of Justice page and see findings against American colleges and universities. See in particular Duke University but also Chatham University or University of Michigan or Swarthmore College or Colorado College or Millikin University or University of Chicago–each of these cases of discrimination against students or staff with disabilities is fairly representative of the landscape in post-secondary education–what we might call the “Autocracy of the Victrola” if you will. And if you believe (as I surely do) that these problems start earlier, you can visit the DOJ’s web pages on school district discrimination settlements.

The issue of inclusion for people with disabilities in higher ed is a matter of culture: far too many colleges and universities fail to imagine that people with disabilities represent a cultural movement. (Let’s leave aside for the moment the powerful statistical urgencies represented by the finding that nearly 10 per cent of matriculating freshmen are self-identifying as having a disability.)
A cultural understanding of disability means at its very core that students or staff with disabilities are our children, our sisters, daughters, sons, fathers and mothers, our veterans, our colleagues. But it means more than that: an academic or curricular awareness of disability means that our nation’s institutions of higher learning will finally sense that what they “do” they do for all and with no oppositional and expensive and demeaning hand wringing. Such a position requires that disability services and academic culture–matters of curricular planning and cultural diversity be wedded as they should be.

In the meantime there are autocratic talking machines aplenty. One senses their steady banishment to the attics of history. Those of us who labor in higher education should do all we can to grease the skids.

**

The noted scholar of disability studies Lennard Davis writes in his book Bending Over Backwards a trenchant overview of the academic relativism that consigns disability to Diversity’s basement and argues for the critical importance of disability studies in higher education:

“The fact is that disability disturbs people who think of themselves as nondisabled. While most liberals and progressives would charitably toss a moral coin in the direction of the lame, the blind, or the halt, few have thought about the oppression committed in the name of upholding the concept of being “normal.” Consequently, one of the major tasks of this new field is to determine why this “fact” of disturbance exists, is accepted, and is promulgated. Disability scholars want to examine the constructed nature of concepts like “normalcy” and to defamiliarize them. David Pfeiffer writes that “normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal.”’° Rosemarie Garland Thomson coins the term “normate” to make us think twice about using the term normal: “The term normate usefully designates the social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them.”’

Normates thus enforce their supposed normality by upholding some impossible standard to which all bodies must adhere. To further demystify such terms, disability activists have called attention to the routine ways in which language is used to describe people with disabilities. Such activists refer to themselves as “crips,” as in the video documentary by David Mitchell and Sharon Snyder called Vital Signs: Crip Culture Talks Back, and choose words like gimp, geek, deaf and blind over more polite euphemisms. Expressions like “confined to a wheelchair” are being replaced by the more active “wheelchair user.” And expressions that use impairments metaphorically to convey a negative sense–such as “a lame idea,” “turn a deaf ear,” or “morally blind”–are being seen as the equivalent of racial epithets. This obsession with being normal has a history, as I attempt to show in my book Enforcing Normalcy)2 The use of the word normal in reference to physical bodies appeared in English merely one hundred fifty years ago, coinciding with the birth of statistics and eugenics. Before the nineteenth century in Western culture the concept of the “ideal” was the regnant paradigm in relation to bodies, and so all bodies were less than ideal. The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand. With the introduction of the bell curve came the notion of “abnormal” bodies. And the rest is history, including the Nazis’ willing adoption of the state-of-the-art eugenics funded and developed by British and American scientists, as Martin Pernick points out in The Black Stork.13 The devastating result was the creation of procedures for exterminating deaf and disabled people, procedures which were later used on the Jews, gypsies, and other “degenerate” races. But the Nazis were only the most visible (and reviled) tip of an iceberg that continues quite effectively to drive humans into daily frenzies of consuming, reading, viewing, exercising, testing, dieting, and so on–all in pursuit of the ultimate goal of being considered normal.

Disability studies demands a shift from the ideology of normalcy, from the rule and hegemony of normates, to a vision of the body as changeable, unperfectable, unruly, and untidy. Philosopher Susan Wendell sounds a clarion call that in the end provides a rationale for the disability perspective: “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal’ and sane …. If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.”4″
–from Bending Over Backwards by Lennard J. Davis, New York University Press, p. 24

We can argue that “the body normal” is still culturally of considerable importance in administrative circles within American higher education. That disability clouds the picture is entirely understandable. Disfigurement is a terribly problematic matter if the goal on campus is simply to look good (whatever your social background).
Academic accommodations for learning disabilities, special provisions for assistive technologies or note taking or the like are still, to this very day, unconsciously imagined by many administrators and faculty as being somehow a matter of cheating the system.

That accessible facilities are not part of the cultural capital of Normates should not be surprising given the historical exclusivity of higher education. But that the problem of ADA compliance remains IS surprising especially in a time when we are seeing wounded veterans returning to colleges and universities in the greatest numbers since the years following World War II. Clearly its time for the Department of Justice to demand compliance with the ADA in higher education. And its time for regents, trustees, college presidents, and faculty senates to demand that their campuses be audited for accessibility and adopt serious plans for reaching accessibility goals.
The final question and perhaps the most important one is to ask how a college or university can be culturally inclusive for people with disabilities, a matter that if answered properly will take away the embarrassment and distress of having to ask for simple acceptance within the academic community.
 

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

Thirty for Thirty on the ADA

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

Essay Five: “Outside the Box”

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

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

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

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

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

She continues:

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

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

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

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

It can only say that discrimination is illegal.

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

Back to Megan Purdy:

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

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