Current Affairs – Planet of the Blind

The ADA @ 30, “Why It’s Like Poetry”

I can’t tell you how to laugh or love someone. I certainly can’t tell you where poems come from or what will stir my heart or yours, say, in the next hour.

The things I can’t tell you make a considerable list. I won’t write it. You have your own even if you don’t generally acknowledge it.

I love a photo of the great opera tenor Enrico Caruso who is gently guiding Helen Keller’s cosmic finger tips across his throat as he sings for her Samson’s aria about losing his sight. Caruso was a genuine peasant and grew up in terrible poverty in Naples. By the tine of the photograph he was as famous as Theodore Roosevelt. Helen Keller was certainly just as much a public figure. And there they are, having what a later generation would recognize as a “Vulcan Mind Meld” and whenever I think of this photo I want to be Helen’s fingertips. I want to feel the luscious electrolysis of mystery-static coming through. Imagine! Touching Caruso’s throat!

I write poems in rain and in the sun. I fall down stairs. Once when I was much younger than I am now I successfully stood on my head while a young woman I loved fed me jelly beans. I fell over.

I lie down and dream of Edgar Poe’s best laugh. It was a vengeful laughter and probably more than that for it was likely mean spirited. It probably came after he met Walt Whitman who he thought a simpleton. Then there was Whitman’s laugh, which came later, at Pfaff’s saloon, and which had no Poe in it.

Where does the bitterness go? I can’t tell you.

I can’t tell you about the winds of my boyhood which kept me awake at night. I’m not that boy any longer. The winds produced stories in me. I don’t remember them now. I do recall that I always insisted to my father that he leave the window open. Even in winter I wanted it open just a crack.

I most certainly cannot tell you how in private I launder my shirt of happiness.

Can’t describe how the stars lean close when I’m mumbling “it’s alright, it’s alright” to an aging dog.

Can’t tell you how it is I can forgive the walls.

Of the ADA @ 30 I can’t tell you what it means. I stop wet faced, inner tears of joy and desperation welling.

There are substantial obstacles. There are miracles that have not yet healed.

I can’t describe poetry. I’ve the law on my side.

Whether you’re disabled or not I can’t say when cordiality or affection will come.

I wear an imaginary sapphire on my finger.

I eat the white flowers from a table and the rich people don’t notice.

Blind, crossing the street.

Like all disabled I work out things in my peculiar way.

Poetry? What is that?

I’m lighter than a child’s hand.

Hay Scratching Hay

When I was a kid I fell in love with a Victrola in my grandmother’s attic. What was I doing up there? It was summer. Kids were playing ball. And there I was with a wind up gramophone with a metal horn. Blind kid alone with an old fashioned record player at the top of a Victorian house. I fell in love with that machine. It worked perfectly and there were dozens of records featuring the great Enrico Caruso. You have to picture me, five years old, a little lonely, and then stunned to hear such a voice under the eaves. I’ve loved Caruso’s voice all my life and yet, even now, sixty years later, hearing him pulls me back to my provincial first opera house.

There were lots of artifacts in that attic. A raccoon coat, a sea captain’s chest, a cracked boudoir mirror, cane chairs that were eaten through, dusty books, a sewing machine, oddments of all kinds, tools I couldn’t identify. I explored with my hands while the great tenor sang of vengeance or a broken heart.

Think about your private opera. I was lonesome as a cricket. I was in love with a strange singer.. Best of all I’d no one to tell.

I still hear the needle hitting the record. The sound of hay scratching hay.

In my case poetry has always been a kind of forsakenness. The solitude glitters. Do you know this feeling? Rain runs down the window and you press your forehead there. You see you need nothing.

D. H. Lawrence wrote: “It’s no good trying to get rid of your own aloneness. You’ve got to stick to it all your life. Only at times, at times, the gap will be filled in. At times! But you have to wait for the times. Accept your own aloneness and stick to it, all your life. And then accept the times when the gap is filled in, when they come. But they’ve got to come. You can’t force them.”

Yes there are moments when the fire warms and the inn is open. Family and lovers; neighbors, strangers well met—a trusty dog. Behind this scrim is the solitude. It was me. It was the voice of a tenor singing in the dark.

The ADA @ 30: “Nightmare”

I had a nightmare last night. What does this have to do with the ADA @ 30? The dream was “noir verite”—I was in a university environment and unable to use crucial websites, read documents, fill out forms. As a blind citizen these experiences of digital exclusion have been customary and continue to be so.

This morning I tried to use Submittable to endorse applications and discovered, you bet, that the platform is only conditionally accessible for the blind, though their website trumpets their commitment to disability. They’ve a long way to go. Typically the sighted put up these statements. I’ve heard it before. “Our program is “robust” when it comes to accessibility!” When you try it you discover almost everything in it doesn’t work with screen readers.

Was my dream a harbinger as in Shakespeare? No, it was reality drilling down into the tissues of my unconscious repression. Somewhere in the middle of the thing I shouted at administrators who rolled their eyes at my disclosure of inaccessible websites. The dream made them into department store mannequins. I told them to get their act together. Told them the ADA is 30.

In Digital Land accessibility is an afterthought. Universities and colleges don’t generally pay attention to the matter. Neither do the vendors. There’s a whole platoon of designers and digital CEOs who proclaim accessibility when in fact they’ve never consulted the disabled end users who need it.

In the dream I was in pain. Then I woke, went to Submittable, and discovered it wasn’t a dream at all.

The ADA @ 30 is still a work in progress. Can we say the ADA has been two steps forward, one step back? I think so. At least accessibility is possible. When blind activists fight in the courts outfits like Scribd are forced to retrofit their services so the blind can use them, even though they don’t like it.

Truth is, the disabled have to fight like hell.

Consider the collective beating the disabled are taking during the current pandemic. As Andrew Pulrang writes: “Disabled people know better than most that in a crisis, in times of confusion, fear, and deprivation, rules and norms meant to protect us can disappear like wisps of smoke.” In the stertorous and ugly national conversations about the pandemic the disabled are often depicted as a necessary sacrifice. In her article “Disabled People Are Not Simply Disposable” Liz Moore writes:

Charis Hill, a professional disabled writer, speaker and model, echoed these concerns in a recent piece they wrote: “Plans and public messaging are drafted with only healthy people in mind as the audience, as if no one listening will be ‘those in poor health’ — and if they are, well, someone else will handle that, and it’s OK if they die.”

The ADA @ 30 can’t fully protect the disabled from the underlying principles of utilitarianism, social darwinism, and the ghost of eugenics.

So I had a nightmare.

The ADA @ 30: “The Happenstance Blues”

So forgive me for starting with a grayness but as I recently joked with a paralyzed friend, “I feel like a battered old fish with many dents in his flesh”—the context—that it’s not probable I’ll see the advances I’d hoped for when the Americans with Disabilities Act was enacted over a quarter century ago. I’m old enough to be feeling what academics call accidie, a weariness, and if I’m not defeated I’m suspicious.

Shorthand: we haven’t gotten far enough, and daily the news is incontestable. The “fish conceit” is what can happen to believers and how not to become the fish is the story (mine and yours) since disability bias surrounds us. (Bias is a story with many chapters like Bocaccio and knowing it never renders comfort, though if you’re a bigot you may enjoy schadenfreude. I once had an “iffy” friend who practiced “vengeance fantasy”—as he said, seeing his enemies staked out in the Colosseum with lions chewing at their entrails, etc. He’d rub his hands and imitate Charles Laughton: “how do you like your God now, Christian?”)

Bias is a variorum edition. My spotty pal really meant what he said—if he’d had his way he’d have fried you in oil. Everyone has his own grayness. Discrimination, personified, wants us to join the Centurions, at least inside, and its first sign is indifference. In my experience street theater is one way to resist it.

Thirty years ago when I was a Fulbright Scholar in Helsinki, Finland I went one night to a gritty, working class bar where I was accosted by a wildly drunken laborer. Everyone was painfully drunk–that manly near death atavistic Viking berserk hallucination of everything, and I thought: “all these years, so many wounds, so few praises.” That was when a man I did not know turned to me and said: “You are a Jew!” “You’re right,” I said, since I was young and in love with poetry, “I am a Jew!” It was the first time I’d ever felt the pins of anti-Semitism, I, a Lutheran with a long beard. He reached for me then but missed and grabbed another man. “You are a Jew!” he shouted. “No, it is I,” I said, “I am the Jew!” But it was too late. They were on the floor and cursing, two men who had forgotten the oldest notion of them all: in Jewish history there are no coincidences.

Kurt Vonnegut would say, “bias is a clunker” and though it must be taken seriously, if you’re one of its chapter headings having a shield of irony becomes essential. You’re a cripple. You don’t belong in here. Don’t belong on this website, on this campus, don’t belong in a customary place of business. For years I used to carry custom made stickers depicting the universal disability access symbol inside a red circle with a line through it. I’d paste them on the doors of inaccessible restaurants and academic buildings and the like. I really need to get more of them but I can’t remember where I they came from, and as I say, I’m in danger of weariness. Dear young Cripples, I’ve been fighting a long time. Thank God for ADAPT. And don’t stop fighting. But don’t stop laughing either. As the great disability writer and activist Neil Marcus says: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…Disability is an art. it’s an ingenious way to live.”

Once while I was teaching at The Ohio State University I was invited to a meeting with a dozen faculty and former astronaut and Senator John Glenn. We discussed the future of digital teaching. Afterwards I boarded a Columbus City bus only to face a woman who loudly asked if she “could pray for me”. She assumed blindness was a sad matter—or worse—a sign I needed spiritual rescue. My guide dog shook his collar. Suddenly I felt wickedly improvisational. I stood up, grabbed the overhead pedestrian bar, and announced loudly so every passenger could hear: “Certainly Madame you may pray for me, but only if I can pray for you, and in turn pray for all the sad souls on this bus—souls buttressed on all sides by tragedies and losses, by DNA and misadventures in capitalism, for we’re all sorrowing Madame, we’re all chaff blown by the cruel winds of post-modernism. Let us pray, now, together; let’s all hold hands!” She fled the bus at the next stop. Strangers applauded.

Improvisation allows us to force the speed of associational changes, transforming the customs of disability life. Disability Studies scholar Petra Kuppers writes: If the relations between embodiment and meaning become unstable, the unknown can emerge not as site of negativity but as the launch pad for new explorations. By exciting curiosities, by destabilizing the visual as conventionalized primary access to knowledge, and by creating desires for new constellations of body practice, these disability performances can attempt to move beyond the known into the realm of bodies as generators of positive difference.

The polarizations, magnetic fields of crippledness are generators. It is not true that rebellion simply makes us old. We’re old when we give up.

And yet…the fights before us are promising to be both rewarding and very hard.

I have the happenstance blues. They’re both accidental (aleatoric) and whatever is the opposite of accident, which, depending on your point of view might have something to do with the means of production, racial determinism from same, or all the other annotated bigotries of the culture club. As a disabled writer I know a good deal about the culture club.

Now back to my happenstance blues…

I’m right here. I’m terribly inconvenient. Blind man at conference. Blind man in the lingerie shop. All built environments are structured and designed strategically to keep my kind out. My kind includes those people who direct their wheelchairs with breathing tubes, amble with crutches, speak with signs, type to speak, roll oxygen tanks, ask for large print menus or descriptive assistance. I’m here standing against the built geographical concentrations of capital development. I’m here. I’m the penny no one wants anymore. My placement is insufficiently circulatory in the public spaces of capital. Which came first, the blues or the architectural determinism that keeps me always an inconvenience?

Capital creates landscapes and determines how the gates will function. Of course there was a time before capital accumulation. It’s no coincidence the disabled were useful before capitalism. The blind were vessels of memory. The blind recited books. Disability is a strategic decision. Every disabled person either knows this or comes a cropper against the gates when they least expect it.

What interests me is how my happenstance-disability-blues are exacerbated by neoliberal capital accumulation. For accumulation one must thing of withholding money from the public good or dispossession, which is of course how neoliberal capital works.

Here is geographer David Harvey in an interview, talking about just this:

Accumulation by dispossession is about dispossessing somebody of their assets or their rights. Traditionally there have been rights which have common property, and one of the ways in which you take these away is by privatizing them. We’ve seen moves in recent years to privatize water. Traditionally, everybody had had access to water, and [when] it gets privatized, you have to pay for it. We’ve seen the privatization of a lot of education by the defunding of the public sector, and so more and more people have to turn to the private sector. We’ve seen the same thing in health care.What we’re talking about here is the taking away of universal rights, and the privatization of them, so it [becomes] your particular responsibility, rather than the responsibility of the state. One of the proposals which we now have is the privatization of Social Security. Social Security may not be that generous, but it’s universal and everybody has part of it. What we are now saying is, “That shouldn’t be; it should be privatized,” which, of course, means that people will then have to invest in their own pension funds, which means more money goes to Wall Street. So this is what I call privatization by dispossession in our particular circumstance.

At the neoliberal university and all its concomitant conferences, workshops, and “terms abroad” (just to name some features of higher ed where my own disability has been problematized) the provision of what we call “reasonable accommodations” under the Americans with Disabilities Act is often considered to be in opposition to accumulation. For instance: I was asked to teach a term abroad in Istanbul. When I pointed out that Istanbul isn’t a guide dog friendly city and that I’d have trouble with the traffic and requested a sighted guide accompany me there, I was told this was too expensive. Think about it! One additional human being to keep me from getting run over was too expensive! The “term abroad” was actually designed to accumulate capital, right down to the lint in each student’s and instructor’s pockets. I decided to avoid getting run over and didn’t go.

Privatized culture means everything, including your safety is your own responsibility. I’m in mind of this. I’m not fooled.

When Trayvon Martin was murdered I wrote about gated communities and the intersection between a black teen’s death and disability exclusion. I opened my piece this way:

I know something about being “marked” as disability is always a performance. I am on the street in a conditional way: allowed or not allowed, accepted or not accepted according to the prejudices and educational attainments of others. And because I’ve been disabled since childhood I’ve lived with this dance of provisional life ever since I was small. In effect, if you have a disability, every neighborhood is a gated community.

I also wrote:

…as a person who travels everywhere accompanied by a guide dog I know something about the architectures and the cultural languages of “the gate” –doormen, security officers, functionaries of all kinds have sized me up in the new “quasi public” spaces that constitute our contemporary town square. I too have been observed, followed, pointed at, and ultimately told I don’t belong by people who are ill informed and marginally empowered. Like Trayvon I am seldom in the right place. Where precisely would that place be? Would it be back in the institution for the blind, circa 1900? Would it be staying at home always?

I concluded:

There’s a war against black men and boys in this country. There’s also a backlash against women and people with disabilities and the elderly. The forces in all these outrages are the same. The aim is to make all of the United States into a gated community. On the one side are the prisons and warehousing institutions; on the other side, the sanitized neighborhood resorts. I hear the voice: “Sorry, Sir, you can’t come in here.” In my case it’s always a security guard who doesn’t know a guide dog from an elephant. In Trayvon’s case it was a souped up self important member of a neighborhood watch who had no idea what a neighborhood really means. I think all people with disabilites know a great deal about this. I grieve for Trayvon’s family. I haven’t been able to stop thinking about him and will never forget.

I have the happenstance blues and they’re a function of design. Differences, and the welcoming of differences require architectures and expenditures of inclusion. It costs money to include the outsiders. You might have to train security guards, authentic ones to protect Trayvon and Stephen. Imagine if they were able to live in peace, share their stories, and spend their money in your neighborhood. (One can’t forget Trayvon was found dead with skittles and a can of soda, the smallest reckonings of teenage happiness…)

Just as accumulation by dispossession involves the creation of labor-free territories, local dispossession requires the devaluation of the individual.

If nothing else, the ADA @ 30 says the cripples have value.

Disability Visibility: the ADA @30

Writing as a poet let me venture that our understanding of tears, their history, or put more darkly our suppression of them is the paramount subject now in America. White people who either do not understand the tears of Blacks and indigenous peoples or they willfully suppress knowledge of them, which gets me to my point: confederate statues are engines to aid white people quash tears. When another statue comes down I say, “there goes another tear quelling appliance.”

In the disability community where great literature has been steadily rising for over two decades we’ve seen a potent reckoning with tear crushing, not as victimization, the tabloid weeping of television talk shows, but tough, ironic, edgy poetry and prose about the true histories of cripples. There are so many excellences. Check out Molly McCully Brown’s collection of poems, The Virginia State Colony for Epileptics and Feeble Minded. (I’ve not yet read her new collection of essays Places I’ve Taken My Body but it’s on my short list.)

Consider now an extraordinary new anthology edited by Alice Wong entitled Disability Visibility: First Person Stories for the Twenty-first Century. The disabled are not supposed to cry; we’re supposed to be inspirational; the ghost of Tiny Tim haunts every person who walks with a cane, rolls in a chair, navigates with a guide dog. Yet poets and literary non-fiction writers bring forward righteous cries, howls, odd giddy laughter that unsettles, yawps, and sing of ardor and truth.

This book holds so many awakened voices and is so expertly edited you’ll turn its pages (or screen read with your talking tablet) in a readerly condition of glory. One has this with great literature. “At last someone has said this!”

There are so many treasures in the book I fear I’ll overlook some while typing on my talking computer. I say read the entire book. Give it to friends. Buy several copies. (A trick I’ve had for years is to buy extra copies of poetry volumes and leave the on bus seats.) (This is what I do instead of giving to the United Way.)

Consider Ellen Samuels essay “Six Ways of Looking at Crip Time” (what could be more apt for a pandemic struck nation?) where she writes:

“Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.”

As a guide dog traveler I’m invariably “out” of time and I spent years lamenting it until after reading Samuels I understood that time keeping is simply another instrument of industrial life, normalcy written on human bodies, a kind of scarring. But despite the predations of time the disabled can now imagine their own futures. Leah Lakshmi Piepzna-Samarasinha writes:

“Yet as disabled people, we know that one of our biggest gifts is the Mad, sick, disabled, Deaf dreams we are always dreaming and have always been dreaming, way beyond what we are allowed to dream. Not in the inspiration-porn way that’s the only way many abled people can imagine that disabled-people dream of “not letting disability stop us!” Wanting to walk or see or be “normal” above all costs, being a supercrip or an inspiration but never human. I’m talking about the small, huge, everyday ways we dream crip revolutions, which stretch from me looking at myself in the mirror—disheveled and hurting on day five of a major pain flare and saying, You know what, I’m not going to hate you today —to making disabled homes, disabled kinship, and community networks and disabled ways of loving, fighting, and organizing that not even the most talented abled could in a million years dream up.”

“What we are allowed to dream” is a resonance, a revolution, and it stands behind every poem and literary essay in the book. Consider the Harriet Tubman Collective’s assertion “that any struggle against white supremacy must also address all of its interrelated flaws—including ableism and audism.” Or consider this from Patty Berne, as told to and edited by Vanessa Raditz, on disability, queerness, and eco-systems:

“Let’s start by openly, joyously proclaiming that we are natural beings, not aberrations of nature. We find healing and justice in the realm of queer ecology, a burgeoning field exploring the vast diversity of gender and sexuality that exists in nature, such as the more than fifty species of coral reef fish that undergo one or more sex transitions in their lifetime, completely transforming their behaviors, bodies, and even reproductive organs.

When we begin to see the planet through this lens, we remember that the entire world has biodiversity that is precious, necessary for our survival, and deeply threatened. Whether we’re looking at ecology, society, or our human culture, diversity is our best defense against the threats of climate change.”

Wong’s stunning anthology gives us the true meaning of the ADA@30. We grieve, imagine, deconstruct the old, create spaces for the new.

Speaking as a disabled man I’m a walking sign. It doesn’t say panic but it does say “this man will upend acquired habits and may cause headaches, cramps, even some dizziness.” The waitress leans in close to my wife who seems normal enough and with a nod in my direction says: “what will he be having?” I haven’t even opened my mouth and I’m a crank as my presence upsets custom and in most settings custom is what passes for belief. Disability is implicitly an overturning of practice which means it’s suspect and maybe it’s worse than that because it forces a revision of actual behavior. People living without disabilities, at least temporarily, genuinely dislike this.

Small wonder I love this book so much. Equally small wonder that the ADA@30 matters so much.

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

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.

ABOUT: 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

(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.

Peace: A Noble and Complete Action

If you don’t admire other people’s love you probably have no love yourself. Cis white men are prone to this but so are black men and Asian men—and now, as we’re seeing all too clearly, so are women—J.K. Rowling and the inflorescent and rededicated Phyllis Schlafly for instance, or Candace Owens. Without love all you have is steroidal rhetoric. People who live without true love for others are very loud. And let’s face it, queer people can be mean as anyone and disabled peeps—don’t even get me started. “What is love,” said Pilate, washing his hands. Love of others is an inconvenience. It’s much easier to step on people. These were my thoughts when Donald Trump gassed innocent protestors so he could hold a bible upside down outside St. John’s Church in Washington, DC. Love is inconvenient.

So is the language of peace. Two days ago I saw an interview with a black woman in Minneapolis who’s hair salon was burned to the ground during the first wave of rioting following the murder of George Floyd. She has nothing now. No insurance. No health care. No money. No prospects.

I’ve been told calling for “peaceful” protests is white privilege. I don’t buy it. I’ll never buy it. Never.

I do not underestimate centuries of oppression and rage.

Calling for peace is not convenient. Its a declaration of work.

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.