Disability Perspectives – 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.

The ADA @ 30: “Pollux and Castor”

I want you to help me. I don’t want your help. The push-pull of disability, the Pollux and Castor, a civic constellation. “Help me,” doesn’t mean we need you able bodied citizens to become Boy Scouts who escort us across streets; doesn’t mean “pity us” or by turns imagining we’re somehow inspiring. Thirty years after the ADA “help me” means picturing new ways of doing things. It also means accommodations for the disabled are reasonable so let’s stop pretending otherwise.

“Who pretends otherwise?” Why would anyone be opposed to providing the disabled with reasonable accommodations? What is a reasonable accommodation? Let’s look:

Title I of the Americans with Disabilities Act of 1990 (the “ADA”)(1) requires an employer(2) to provide reasonable accommodation to qualified individuals with disabilities who are employees or applicants for employment, unless to do so would cause undue hardship. “In general, an accommodation is any change in the work environment or in the way things are customarily done that enables an individual with a disability to enjoy equal employment opportunities.”(3)

See: https://www.eeoc.gov/laws/guidance/enforcement-guidance-reasonable-accommodation-and-undue-hardship-under-ada#intro

Perhaps no bigger transformation in the lives of the disabled has ever happened. The very idea that it’s reasonable to modify basic workaday structures and appurtenances was radical and remains so. Few people understand that disability is a product of the industrial revolution with its vast reorganization of labor. The advent of dark Satanic mills lead to the valuation of labor ready bodies. The factories of the 19th century redefined the value of bodies just as they exacted standards of physicality. What’s the Castor to the factory’s Pollux? The asylum. The disabled were stripped of civic and economic value in the early 19th century. Rather than modifying the work environment why not warehouse those with physical or neurological differences?

We shouldn’t forget what a radical concept “reasonable accommodation” truly is. It is reasonable to provide the blind with Braille signage or technical adaptations. It’s reasonable to provide a bank clerk with lupus a tall stool to sit on and modified work breaks. Reasonable to provide deaf employees with supportive technology. The provision of these things does not induce undue hardship. They’re not expensive. As a blind employee I can’t demand my own jacuzzi on the roof. I can ask for a talking computer.

I say that reasonable accommodations are revolutionary and they’re the antidote to pity.

This begs the question “why would any employer fight reasonable accommodations?”

Consider most recently the story of Dominos Pizza which cried foul when a blind customer demanded that their website and phone app be usable by those with vision impairments. I want to streamline this: the blind use screen reading software to access digital sites. In turn websites need to be written with the proper coding to allow the computer or phone to talk. This is really simple. I kid you not. Making an app or website accessible to the blind costs next to nothing.

Dominos took their umbrage and hostility all the way to the US Supreme Court. They lost. Turns out even the pro-business Supremes saw through the ruse: Dominos website is in fact a public space and most therefore be accessible. Moreover, Domino’s spent more money fighting the blind than they’d ever have spent making their website and app friendly for the blind, Reasonable means reasonable.

When a business fights the ADA its resistance generally speaks to why the law had to be adopted in the first place. In shorthand: it’s easy to include the disabled in the workplace. It’s inconvenient for some to have to think about it. Reasonable accommodations are not inconvenient, They do require imagination. I know of an agricultural studies student who used a wheelchair. Her university easily modified a tractor so she could ride it. With imagination and a can do spirit you can do almost anything where disability is concerned. And yes, the tractor modification was cheap.

Another way to put this is I don’t need help crossing the street. I do need help using your bank machine if it’s not blind friendly. Only unimaginative built environments trigger my need for assistance. I don’t want your help. I want to use the damn device.

Dominos argued that the blind could call up their stores and have staff read them the menu options. Imagine that. Why does the app exist? So you can do it yourself. I’ll just say that if you call a Domino’s, tell then you’re blind, and ask them to read their entire menu and the prices they’ll hang up on you.

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.

The ADA @ 30: “Beauty and the Built Environment”

When thinking about the Americans with Disabilities Act we talk about the built environment. The term indicates the where, what, when of humanly constructed public spaces. Where do you need to go? Can you get there? When will you get there?

What does access mean? If you’re a wheelchair user in New York City these questions are steepened by the most commonplace things—for instance the subway system is not accessible by elevators in most locations. Moreover the few elevators which do exist are usually out of order.

This is the ADA @ 30: still largely ignored in our nation’s largest cities although the disabled are promised a better future. Plans released a year ago by the New York Metropolitan Transit Authority propose creating forty new accessible subway stations. That’s ten percent of the total number of stations but it would represent an increase over the measly 25 per cent currently available. But seasoned disability rights activists know how this goes: the funding disappears before the ink is dry; delays force trade offs. Meantime no one fixes the existing broken elevators.

The built environment needs creative thinking now more than ever. By making public spaces user friendly for all we create more than good train stations or schools—we challenge ourselves to embrace broad functionality and dare I say it—beauty. In a recent essay noted disability activist Steve Wright says:

“There are some great designers who serve wheelchair users and other people with disabilities, but it is amazing how many plans I’ve reviewed — even for complete streets aimed to calm traffic and serve all — that have needlessly introduced multiple barriers to people with disabilities.

That is why I am calling on all professional organizations that impact the built environment to celebrate the ADA. Millions of their members can be inspired to build beautiful, graceful, human-scaled design that will make life more equitable for people who have mobility, sight, hearing and intellectual disabilities.”

As a poet who has a disability and who’s taught creative writing for years, I recognize Steve Wright’s brand of cheerleading. How many times have I extolled the joys and satisfactions of imagination? Think of the movie “Dead Poets Society” where John Keating, played by Robin Williams, practically turns himself inside out to inspire his downcast prep school students. I too have climbed on my desk, made the sleeves of my sweater into moose antlers, declaimed poetry with munificence as if I was a prince in a land of fairy tales. So I know hope when I see it. Be inspired to build beautiful, graceful, human-scaled designs. Try writing a little poetry. These things won’t hurt you.

The ADA offers an opportunity, especially as we consider rebelling the infrastructure of the United States, to create inviting spaces. Not spaces where the disabled have to fight to get in. Not grudging accommodations. Not the threadworm second rate “improvements” that forget wheelchair access in the very auditorium which now has a ramp but no place for a real wheelchair—not the unpainted wheelchair lift in a thousand campus buildings across the US—those wheelchair lifts they were “forced” to put in, hence resented. Let’s end public spaces clouded by resentments.

Steve Wright, again:

“We are living in the most partisan, divisive and frightened time in our nearly 250 years as a nation. Everyone has his or her idea of how we can begin to unify, heal, come together. Mine is to celebrate the ADA in the spirit of equity for all.”

The ADA @ 30: Thinking of Rousseau

Jean Jacques Rousseau had a dog named Sultan who accompanied him to England when his life was threatened in France. Poor broken Rousseau with his malformed urinary tract, cloying hypochondria and hot paranoia–also poor in cash, resolutely poor in friendships. Sometimes we think we understand him–we, the descendant cripples–those who spent fortnights alone in childhood and more than once. We who occupied our attentions with flowers and seeds. Rousseau had the triple whammy: his mother died when he was very young, then his father ran away. He was forced to learn the baleful adolescent art of beseeching strangers for protection and love. He was easily tricked into churches and bedrooms. And he was easily discarded. The cripples understand this.

No wonder he discarded neo-classicism for what others would call the romantic. No wonder Shelley and Byron adored him–passions of betrayal and resolution always feel the most authentic. Rousseau’s enemies substituted “savage” for “authentic” and prided themselves for calling him “uppity” which is of course what is generally done to passionate cripples. Small wonder Rousseau took up the matter of social consent among the governed.

Sultan lead him into the English countryside where he seldom encountered another soul. I love knowing this. A dog can stir and extend solitary human concentration which is the reward of stigma, but you must understand it in a canine manner–pay attention to what’s here and here; not yesterday; never tomorrow; and yes, a dog looks the other way when you take from your pocket a handful of French seeds and push them into British soil.

What does Rousseau’s depression and malformed urinary tract have to do with the Americans with Disabilities Act? We’re in a mood of celebration! We can do both. Consider the opening to Rousseau’s Reveries of the Solitary Walker which is in fact one of the first disability memoirs:

“So here I am, all alone on this earth, with no brother, neighbour, or friend, and no company but my own. The most sociable and loving of human beings has by common consent been banished by the rest of society. In the refinement of their hatred they have continued to seek out the cruellest forms of torture for my sensitive soul, and they have brutally severed all the ties which bound me to them. ”

He was in fact disabled by malformations of his nether parts and he had profound depression. Being a liminal figure owing to these conditions he was caste out by the congealing engines of 18th century normalcies. On this the aristocrats and the bourgeoisie could agree—the salon, the atelier, the coffee houses were not places to be troubled by the inconveniences of broken embodiments. Having a troubled body meant staying away—meant the asylums and hospitals. It meant living in the poor houses. Good bodies meant public bodies. Rousseau’s solitary journeying on foot is disability journeying. He was Basho, a travel weary skeleton.

Poor Roussea! He had inherited disorders, porphyria which lead to abdominal pain and vomiting; acute neuropathy, muscle weakness and seizures; hallucinations, anxiety, paranoia—and as if these weren’t enough he had cardiac arrhythmias. He was by turns aggressive, provocative, contrarian, and yes, he was always ill.

Today in the disability arts community we talk of disablement as epistemology. We know that altered physicality and neurodiversity offer unique and valued ways of thinking. What’s different now from Rousseau’s time is that “with” the ADA the disabled are not as easily caste aside, and though this can be done (one thinks of all the micro aggressions the disabled invariably experience even now, arguing for accessibility, making their point for inclusion and respect against structural ableism) it’s no longer possible to lock the gates of Geneva on that annoying cripple.

On the subject of micro aggressions much of the Reveries of a Solitary Walker tells of the slights and the disdain Rousseau absorbed and encountered. He was in fact an unpleasant man. I too some days am an unpleasant man. Human rights and their advocacy demand it. Seldom does progress develop for polite societies. But I’ll add also that in Rousseau’s time there was no language for depression—the term itself comes from an age when treatment and acceptance are commonly understood. Instead it was called “melancholia” and it was considered a form of madness. You don’t have to read Foucault to know what happened to the mad though why shouldn’t one recommend it? In any event Rousseau lived in an age when mental illness was believed to be a moral failing. This sub-Cartesian idea has never gone away.

So as we celebrate the ADA @ 30 let’s remember how it protects and defends our outlier minds and bodies. Let’s not depreciate how crucial this is. Our solitary walks or “rolls” in our chairs are a matter more of recreation than enforcement, at least where the law is practiced. And may the global adoption of disability rights make this so around the world.

I’ll let Rousseau have the last word:

“Always affected too much by things I see, and particularly by signs of pleasure or suffering, affection or dislike, I let myself be carried away by these external impressions without ever being able to avoid them other than by fleeing. A sign, a gesture or a glance from a stranger is enough to disturb my peace or calm my suffering: I am only my own master when I am alone; at all other times I am the plaything of all those around me.”

One might say, post-ADA, we’re playthings no more.

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.

The ADA@30 “Campus Cocktails”

I’ve met hundreds upon hundreds of college faculty throughout my life. I grew up on campuses. My father was a professor, then a Dean, and eventually a college president. My childhood was filled with cocktail parties and chatter. Over the course of my own career I’ve taught at four well known academic institutions and have served in various administrative roles. What I’ve come to understand is that higher education still functions like those cocktail parties of yore and I can attest as a blind man that it’s a party that doesn’t love the disabled.

My wife worries when I write so candidly about academic ableism. She fears it will brand me, that a prospective future employer will be troubled by my candor. I worry about this also. Yet I can’t shake off what I know. The party is chummy and its held in houses without ramps, where the host doesn’t want your guide dog, where you’ll not be able to use the rest room. And when the clubby faculty actually see you they’ll quickly look past you to see if there’s someone better to talk with.

Cocktail parties are engines. Their fuel isn’t the vodka, it’s self-contempt disguised as jocularity. As a boy I heard the terrible laughter of the professors—a horse laugh; the basso profundo guffaw; various squeals. They were “me me me” chortles. They scared me. Hawks, wolves, rapacious fish.

The contempt of faculty for other faculty is an old story. I’ve seen feminist scholars who don’t like other women and who’d do anything to undermine their women colleagues. I’ve seen faculty hiring committees sneer at a job candidate who hailed from a working class background; seen faculty of color dismissed in coded lingo only the chummy would use—his work needs more grounding; further evidence from the published record, etc.

Ableism in the academy is rampant and college faculty pass it around without scrutiny because it’s the last easy bastion of smug satire—contempt disguised as jocularity—chuckle, if you need an accommodation sonny you’re not a real student. You certainly shouldn’t be on the faculty.

The professor who advertises that he studies “micro-aggressions” is an ableist. He’ll be the first to tell you if you were a nicer person you’d get the accommodations you need and really it isn’t structural ableism that prevents you from having what you require to work in dignity, it’s your pesky attitude. Be nicer little fella. By the way while you’re up, can you get me another drink?

The controlling metaphor of higher ed is the boozy get together. Once you’re in, even if you hail from a historically marginalized background yourself, you’ll want to do some sneering about the aspirants who want educations in the land of exceptionalism. The super ego of the academy reflects the ethos of the private club.

If the boy I was, the one in the attic, who feared the monstrous laughter of the professors had chosen the career outlined for a blind citizen of that era I’d have learned how to cane chairs or sell magazines. Higher ed was my route and yet the road was and is unfriendly just as it is for Black students and all others who are claiming their citizenship and rights from outlier positions.

But still I expected more from the professors. I expected that by this time in our nation’s history they’d have put down their drinks.

Some years ago I wrote a little send up “poem” for the professoriate:

The Professors

Triflers beware! The professors are here:

Punctilious, mindful, on the move,

They’ll flush you out, invest your reveries,

Or close your brown studies. It’s you they’ve watched

Woolgathering, or nonchalant, improvident- tant pis!

Micawbers, slackers, skimmers, here’s your match,

The professors have arrived: the robed Savonarolas!

Leap in the dark, grope or guess, send up a trial balloon,

Rummage, ransack, winnow or appraise–

Inquisitors will grill you: mooncalf, booby, lout, buffoon.

It’s time for gumption, prudence, brains and mother wit:

A bluestocking’s wrangle, a sine qua non;

Alas, poor duffers, bookless, smattering, you invent

A limerick, an Irish muddle, clearly heretic.

O the professors are here: praise Mentor!

They swoop through the long schoolroom,

Vertiginous, oracular, confirmatory, O rodomontade!

Yes you can argue the professors don’t like anybody. But notice the poem reveals how the uneducated serve as metaphors for dumpling students or colleagues they so ardently despise.

Am I being unfair? The question is absurd. American higher education is the last bastion of nearly undivided disability discrimination. Just visit this website:

https://www.d.umn.edu/~lcarlson/atteam/lawsuits.html

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”

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

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.