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able bodied people who resent our perceived privileges, and though our signs are liberating, they can entrap us—they’re outdated the moment we post them, they don’t represent real humans.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 It’s as outdated as antimacassars on horsehair chairs.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: “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.

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: “Coming out of the Dark”

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 2: “Coming out of the Dark”

“Get out of your comfort zone.” “Think outside the box.” You’ve heard the phrases. Disabled people are ironic counterpoints to both of these sayings—we’re not in the comfort zone and we don’t have to be told to think imaginatively—all our rendezvous with “normal” require fresh thinking.

The ADA was signed in the year of Billy Joel’s “We Didn’t Start the Fire” and if you’re a fan of cognitive dissonance you’ll recall the disabled “did” start the fire—Viet Nam veterans, advocates for the mentally ill, Baby Boom cripples who wanted lives and careers from main street to Wall Street—these men and women started a fire with their identification papers. They also crawled up the steps of the US Capitol, disrupted political conventions, and occupied hundreds of hostile public spaces.

This thirty year old landmark civil rights law didn’t happen overnight. You can read about the groundbreaking work to launch the ADA in Enabling Acts by Lennard Davis. He tells how pioneering disability activists like Judy Heumann, Ed Roberts, Pat Wright, Bob Funk, Arlene Mayerson, Mary Lou Breslin made the difficult journey from California to Washington DC in 1980. The back story of the ADA is remarkable for its grass roots, its sophisticated, its doggedness, its faith and tireless optimism.

The fuel for the fire was pure, unadulterated inaccessibility. If you were a wheelchair user you couldn’t take public transportation, couldn’t get into civic offices, businesses, take a taxicab; if you were blind you could get a guide dog or a stick but you had no rights to education. If you were mentally ill or neuro-divergent you could count on being a shut in or a patient in a ward. If you were born after the ADA you might not know how bad it was unless you’ve taken a disability history course. It was bad.

While Judy Heumann and so many others were descending on Washington I was in Iowa City, blind, trying to get a grad degree and finding the university was hostile to the disabled. I didn’t have disability pals. I internalized the disdain of others and suffered. I was abject.

The only thing I knew how to do in 1980 was dream. Dreaming is good. But there were fighters out there in the bigger world who were and remain my allies though I didn’t know about them back then.

In 1980 I didn’t have the knowledge as a blind person about how to travel safely.

My memoir Have Dog, Will Travel: A Poet’s Journey in part relives that era:

I’d worked all my life—had actually choreographed it—so I could travel to small and secure places without a white stick. I’d attended college at Hobart and William Smith in Geneva, New York, where my father was the president. I knew every inch of the campus. I learned in a private, ill-favored way how to walk mnemonically. It was eight steps down from the English Department to the sidewalk; seventeen steps to a funny break in that same sidewalk which somehow never got repaired; thirty steps between the post office entrance and my mailbox. I wandered by rote. At a school with only 1,600 students I could pretend to see. When I couldn’t manage it, I’d say I had vision problems. Anything sounded better than blindness. I had “vision issues.” I needed extra time to complete reading assignments. One of my eyes drifted. But still, seeing me move with intention from place to place, many friends and faculty had no idea how all encompassing my charade really was.

When I decided to attend graduate school at the University of Iowa’s Writers’ Workshop I flew to Iowa City three months early and walked the town like a crime-scene investigator. I walked in little grids. I moved haltingly up and down dozens of streets. When I thought no one was watching I drew a telescope from my pocket and read the street signs. I hiked in the stifling summer heat and worried about people marking me as deviant.

Far away from Iowa smart activists were challenging everything I was struggling with. Disability would no longer be deviant.

Today I teach at Syracuse University and work on interdisciplinary disability teaching and research in the Burton Blatt Institute.

Burton Blatt was also a pioneer of disability rights. The BBI website notes he was “an advocate of deinstitutionalization, and he helped initiate community living programs and family support services. In his clinical work he emphasized the provision of education to children with severe disabilities, those whom he called “clinically homeless.” As a national leader in special education, he called for programs to integrate students with disabilities into public schools and worked to promote a more open society for them.”

Thirty years after the ADA was signed that work continues. Inclusion means opening the doors for non-speaking people, making certain the clinically homeless are part of the community, standing for accessible design, pushing for self determination, fighting for ecological justice, black disabled lives, inclusive education—and this is only a partial list.

Another great song from 1990 was Gloria Estefan’s “Coming Out of the Dark.” Perfect.

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 

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 

Thinking of Cesar Vallejo, Early Morning, in the Age of Police Brutality

I want to begin with a short poem by the great Peruvian poet Cesar Vallejo, translated by Robert Bly: 

Black Stone Lying On A White Stone

I will die in Paris, on a rainy day,

on some day I can already remember.

I will die in Paris—and I don’t step aside—

perhaps on a Thursday, as today is Thursday, in autumn.

   It will be a Thursday, because today, Thursday, setting down

these lines, I have put my upper arm bones on 

wrong, and never so much as today have I found myself

with all the road ahead of me, alone.

   César Vallejo is dead.  Everyone beat him

although he never does anything to them;

they beat him hard with a stick and hard also

   with a rope.  These are the witnesses:

the Thursdays, and the bones of my arms,

the solitude, and the rain, and the roads. . .

This poem has been much on my mind for several reasons. Vallejo wrote it in despair and weariness. As a Marxist poet living in exile in Paris he was hounded by the police, was frequently arrested and subjected to beatings. His is the true story of literary exile in Paris as opposed to the white privilege story of Hemingway and his circle. Hemingway’s crowd held no political positions and fought for no causes. 

It’s also been in my thoughts because it’s about life inside the broken body which to my mind makes it a disability poem. His upper arm bones are wrong, his will can’t change the fact, and like so many cripples he finds himself alone. The only witnesses? The opaque and unfeeling days. 

The third reason the poem’s been in my thoughts is that we’re living in a globalized police state now. From Minneapolis to Mumbai; from Atlanta to Ashgabat police violence is not just the norm, it’s welcomed by the ruling classes. This poem is about the toll this takes “on the inside”—what this does to “the inner life.”

The poet will die in Paris on a rainy day—a day he can already remember, for death by persecution really never ends. 

It’s a brave poem. It skips the contemporary American penchant for lyric poems that sentimentalize the glories of nature or the joys of sex.  

It’s a brave poem. There’s a hint of Orwell. (The jackboot that’s going to step on you throughout eternity.) 

It’s a brave poem. Cesar Vallejo never does anything to anyone and they beat him for his very consciousness and his foreign appearance. 

It’s a brave poem because he wrote it without sentimentally. 

It is much on my mind. 

On Going Maskless and Disability

When I was a new guide dog traveler some thirty years ago a strange man grabbed me as I was crossing Fifth Avenue in New York. He yanked me forcibly until we reached the far sidewalk and then without a word he ran away. My dog looked up at me as if to say: “Man that was weird!” Now that we’re in the heart of a pandemic I’m wondering how it will be when I finally return to the streets. Can the blind count on people to keep their distance? Guide dogs are trained to navigate around people but they’re not trained to imagine six feet of social distance. At best they use our combined width as navigable space.

A friend who’s autistic tells me that maskless people are triggering his anxieties. I get it. And what about if you can’t see “the other?” Being disabled in public requires that you believe strangers are obeying the law, that they’ll stop for red lights, place fencing around a hole in the pavement, behave with concern. The maskless throngs I’m hearing about scare the heck out of me. I’ve had pneumonia four times and almost died from the so called “Hong Kong” flu in 1969. If I can’t see you coming and you don’t care about my health then being on the street, any street, is an impossibility.

My guide dog can keep me from falling down stairs, stepping into traffic, hitting my head on low hanging branches, can find an escalator or the nearest door. But she can’t save me from the projective cruelty of Fox News addicts who think masks are just a cheap gimmick in the culture wars.

The disabled, blind or not, neurodiverse or not, wheelchair users or not, deaf or not, we need you to take our very survival with the utmost seriousness. This is especially true when it comes to colleges and universities that are now imagining how to reopen. Don’t grab us. Don’t breathe in our faces.

I was horrified to read that Johnny Cash’s granddaughter was verbally assaulted yesterday by a non mask wearing bully. She has a history of pulmonary problems. She’s me. She’s millions of us. Young and old. Overtly disabled or living with things you can’t see. The anti mask movement is essentially saying, “life is cheap.” And also: “I’m so much better than you are, because I don’t believe in facts.”

Here’s a fact: the disabled are the largest minority in the US. Our health matters. The vulgar idea that some lives are easily sacrificed for the “economy” is just repackaged Nazi era eugenics. Hitler said the disabled were useless eaters. The right wing stampede to reopen business without safeguards touts the notion that some lives are less valuable than others. Going maskless is their flag.

Has Someone Stolen Your Broken Soul?

What if I could tell you how the story ends? Would I be Bocaccio? Yes I’d be a moralist. Such a role is unappealing. I think we can all agree there are too many narrative moralists already. Laurence Sterne wrote: “Respect for ourselves guides our morals; respect for others guides our manners” One may fair say Americans have little respect for themselves. This is why our voters—the few who show up—dislike the most honest candidates. They require plenty of disrespect. If you believed Ronald Reagan’s oft repeated story about welfare queens driving Cadillacs you couldn’t possibly like yourself. The question before us now is can Joe Biden’s campaign which aims at reconciliation and kindness actually succeed? Can Americans decide that just for once they might vote for self-respect?

I’m not Bocaccio. Nor am I a TV pundit. I don’t have the skills of Steve Kornacki who, seemingly, can drill down into the most mullioned voter numbers. But I”d feel better if public analysis of our electorate focused on the victimization narratives that unhappy Americans live by. Left, Right, moderate, fascist, socialist, what have you absolutely all comers are like Rodney Dangerfield—they don’t get no respect. Donald Trump’s rallies are entirely about this. So are Bernie Sanders’ events. Someone is conspiring against you. You’re not sufficiently loved. There’s a deep state or the establishment or your third grade teacher who’s gonna get ya.

As a disabled person I know a good deal about persecution. I’ve been told I don’t belong almost everywhere and yes, ever since I took my first steps. I’ve lived the story of feeling like I’m not sufficiently loved. This is a trap. Victims don’t understand love. One thinks of Carl Jung’s observation: “Nothing is possible without love…for love puts one in a mood to risk everything.”

Victims take no risks.

Respect for others means you took a risk and it means you’ve learned some manners. What do I think that means? Not instantly criticizing someone who’s said something that trips your switches. Not immediately disdaining people who appear ill clothed but are driving luxury cars. Not hating yourself because some imaginary person has stolen your broken soul.

Contrarianism in the Age of Cancel Culture

In his excellent book “Letters to a Young Contrarian” the late Christopher Hitchens wrote: 

“A map of the world that does not include Utopia, said Oscar Wilde, is not worth glancing at. A noble sentiment, and a good thrust at the Gradgrinds and utilitarians. Bear in mind, however, that Utopia itself was a tyranny and that much of the talk about the analgesic and conflict-free ideal is likewise more menacing than it may appear. These Ultimates and Absolutes are attempts at Perfection, which is—so to speak—a latently Absolutist idea. (You should scan Brian Victoria’s excellent book Zen at War, which, written as it is by a Buddhist priest, exposes the dire role played by Zen obedience and discipline in the formation of pre-war Japanese imperialism.)”

Excerpt From: Christopher Hitchens. “Letters to a Young Contrarian.” Apple Books.

If you want to cancel someone (a harrowing parlance) all you have to do is say he she or they is not up to the ideal of perfection. The Fascist or Stalinist doesn’t rest until the world is cleaned of imperfect people.

I’ve always been a problem because I trouble the public nerve of ableism—which for me means the industry of harming all marginalized people for the disabled are black, brown, Asian, Latino, white, old, queer, and owing to normative formations, (utilitarianism) wishes to eliminate all who are physically different.

Not liking what someone says is not sufficient reason to eliminate them though I may wish you’d shut up. I don’t believe in the language of cancel.

Nor do I believe academics should be fired for holding loathsome opinions. If the ideas are bad they’ll not stand the test of time. 

Hitchens again:

“If you want to stay in for the long haul, and lead a life that is free from illusions either propagated by you or embraced by you, then I suggest you learn to recognise and avoid the symptoms of the zealot and the person who knows that he is right. For the dissenter, the skeptical mentality is at least as important as any armor of principle.”

It’s hard to be a dissenter because you’ll not be much applauded. 

I’m a fan of Kwame Appiah’s book “The Lies That Bind: Rethinking Identity—Creed, Country, Color, Class, Culture” which troubles the incorporation of singular cultural positions. Identity is built around insider vs. outsider negotiations or worse, willful erasures.

Identities matter to people. They offer spiritual and juridical power and create the basis for critical solidarity and progress. As Appiah points out, identity gives us reasons to do things. They also give others reasons to do things “to you” and all human rights activists know it.

Appiah writes:

“In sum, identities come, first, with labels and ideas about why and to whom they should be applied. Second, your identity shapes your thoughts about how you should behave; and, third, it affects the way other people treat you. Finally, all these dimensions of identity are contestable, always up for dispute: who’s in, what they’re like, how they should behave and be treated.”

Its the contestability of prefiguration I’m interested in. You shouldn’t subborn blackness or disability or gender to abstract, privileged philosophical thinking. But identity also creates hollow perfectionism as Hitchens knew.  I’ve seen blind people ridicule other blind people because they chose to walk with guide dogs as opposed to white canes. Cultural call out is aimed at canceling the contestable. It leads to public shaming and trolling. 

I’m also a big fan of the writer Roxanne Gay who writes about resisting the racialized and patriarchal oppression aimed at the diminishment of black women’s bodies.  No one should be able to diminish bodies. We defend our identities for excellent reasons. 

We have many things to do out there as Appiah says. Turning away from the humanitarian power of identity is not a good idea. Contesting the traps of identity rhetoric is important however. I have white privilege. I also can’t get into restaurants and taxi cabs because I have a service dog. I live in multiple identity traps. Appiah ends his book with a famous Latin quote:

“Homo sum, humani nihil a me alienum puto.
I am human, I think nothing human alien to me.”

Ode to Professor “P”

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.

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