Planet of the Blind

The ADA @ 30: “Limerick”

I wrote a terrible limerick last night. It was disgusting. Needless to say it can’t be shared. It didn’t have race or women or disabilities in it; just a man with his nether parts. The point is, when you’re disabled you need humor to get by. Yes Lou Reed was right, you need a bus load of faith; but a snarky joke, even when unshared does wonders.

Mel Brooks said something like “tragedy is when I cut my finger; comedy is when you fall in an open sewer and die.” That’s how my private cripple comedy works. The shop owner who refuses to admit me and my guide dog falls into a man hole but in my version he doesn’t die—he lives for all eternity with Richard Nixon who wears Bermuda shorts and black phlebitis compression socks and pushes a beach comber’s metal detector muttering, “Jesus, Spiro, I know it’s here somewhere, we’ve got to find it before Ted Kennedy shows up!”

I’m not talking about disability standup or performativity. This is the inner life; the engine room. Disabled we face micro aggressions; macro; put downs; eye rolling; outright contempt from the abled. Or worse, we get their treacle: the “you’re so inspirational” pity party shit. And if that’s not bad enough, we get the disabled themselves who make a big deal out of running the marathon because after all they’re super cripples. The media buys it every time. Meantime the ordinary disabled are unemployed. Behind every story about the long distance runner with his guide dog are 100 blind people without work.

Down in the stifling engine room of self survivorship it’s always like those submarine movies where pipes are bursting because a depth charge has gone off and gritty sailors are smacking everything in sight with wrenches. This is one of the reasons I love submarine flicks: they’re about the inner lives of the disabled. We get it together under pressure. The other reason I love those movies is because the sailors almost always get revenge.

Years ago I worked at a famous guide dog school. I discovered that one of the most influential members of the board of trustees, a blind man, actually hated the blind and he was loud about it. He called them “mooches and leeches” meaning the clients who received guide dogs free of charge (a necessity since 80 per cent of the blind remain unemployed even today) were just “takers” and therefore were unworthy of respect. The man is dead now. He was briefly famous. He became a federal judge. He absolutely hated the disabled. My engine room was flooded every time he opened his mouth. One day I imagined him tied to a stake in the Roman Coliseum, lions circling. This helped some. But when I pictured him as the emperor Augustus things were funnier. Augustus spoke disparagingly to common men who were dressed in cloaks and ruled that only toga clad men could enter the forum. He said, pointing to the elect: “Behold them, conquerors of the world, the toga-clad race of Romans!”

So I pictured old “mooches and leeches” in hell sporting a toga, waving a white cane and shouting at winged rats.

The cripple comedy engine room is a tough place. The disabled experience a lot of put downs. When they come from another disabled person—one who’s done well in life—it’s just intolerable. Alas there are bullies everywhere.

I tend to consign people to imaginary hells. It’s the oldest literary trick in the book. Every year I reread a little Dante. You can’t read a lot of Dante because then you’re stuck down there.

I like it when the submarine surfaces.

“What” you may ask “does this have to do with the thirtieth anniversary of the ADA?” Plenty. A free people are able to embrace their culture and that means craft. Synonyms of craft include flair, gift, genius, cunning.

When you laugh at oppression you’re no longer the court jester, the funny cripple who pleases the king. You’re tough, shrewd, and you know how to employ your wrench. Another word for this is comfort, as in self acceptance. I’ll close with a quote from comedian Josh Blue who has cerebral palsy: “The thing about my comedy is that I’m so comfortable with my disability that you don’t have a right to be uncomfortable, if I say something that’s hard in my life but put it in a way that maybe you have not thought of, and I’m laughing at it, it gives you the ability to laugh at the same thing within yourself. I feel like every person has a disability in some way. Whether you’re dyslexic or Republican or whatever.”

The ADA @ 30: “Superego Freedom”

My mother was an alcoholic and not a functional one. Her life was marked by drawn curtains, broken fingers, phantom pains and prescription drugs which, mixed with scotch tended to make her psychotic. When I was a college freshman and no longer living at home she stalked my younger sister around the house clutching a knife. My sister took refuge in a locked bathroom and waited it out. By dawn our mother was asleep on the living room floor in a tangle of shoes and bottles. This story is in no way singular—my sister and I are just tiny dots in the ocean of abused children. The story of my adult life has been the relentless pursuit of self-acceptance, forgiveness, emotional intelligence, and compassion. I think forgiveness and compassion are different as forgiveness can be merely political and compassion is more concerned with lovingkindness.

I work with people who don’t necessarily like me. Chances are good you do too. You may be tougher than I. You might not care about the ghosting malevolence of the workplace, the soiled superegos of competitively unhappy souls who turn up in every meeting, warehouse, classroom—or for that matter even in leisure spaces. Me? I tend to care too much about the opinions of others. This is because the long emotional after effects of my upbringing make me prone to a knee jerk impulse to fix things. If people are ugly I think it’s my job to improve them.

That’s of course its own addiction. I’ll solve your problem. Get you another drink so you won’t hit me. Disguise the damage to the best of my ability. I’ll make excuses for you. I’ll imagine your unhappiness is my fault.

Until one day I don’t. One day after attending Al Anon and undergoing some excellent therapy I decided my mother was on her own.

Nowadays I attend to my own esteem though not without set backs. There’s a senior professor at the university where I work who went out of his way to sabotage me behind my back—an ableist, smug, privileged “shyte” as the Irish would say. I don’t think I can forgive him and I certainly can’t imagine offering lovingkindness.

I know this is what I should do.

I’m a lefty Episcopalian.

Then it dawns on me: I can let him go like a pigeon one has restored to health. Out the window he goes with a sparkle of feathers. He soars through tangled clothes lines. I shut the window. Turn up Mozart on the radio.

Lovingkindness is letting the bird who once shat on you find his own way.

What does this have to do with the Americans with Disabilities Act @ 30? This is for all us cripples: your civil rights are not subject to the whims of others. What you think of yourself should never be influenced by the unhappy souls who turn up all around us.

All Used Up

“Well,” said Uncle History, “you can’t go back to the woods,” by which he meant the forest of the imagination. “We’ve been ruined,” he added. Then he got specific: “the Troubadour poets; castle walls, mechanical nightingales…all that la di da!” He meant it too. “The cafes, the wounded-ness songs; paving stones under your feet, walking home from dances.” Then he took a swig of clear liquor and you could see sunlight through his bottle—the label read, “no purpose for a poem, no purpose for words….”

Bus Going Somewhere (True Story)

Once aboard I tuck my guide dog under the seat, her paws safe

For I take care of her, our pact, she watches cars I watch her toes,

When a woman, a stranger, a person entirely unaccustomed to the blind

Leans close, rustling something in her hands I know not what

And says “I’d have to kill myself if I was you.” I think she’s got flowers.

She kneads the cellophane, breathes hard. “Oh I already did that,,”

I say. “I used to be you in the far flung spindrift galaxy

Called the Black Eye. I rode a bus with hot house flowers

And hey diddle diddle one day I couldn’t take it anymore

So now I’m a blind man beside you on a boppity bumpity bus.”

Yes in case you’re wondering, I smile.

She gets off at the next stop.

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.

The ADA@30: The River

They go down to the rivers, the myth makers and killers. So what’s your approach to the stream? Thinking broadly can the law be the Danube or Mississippi? The essential question: was it written with hope or enmity? I say the ADA was written in hope. I say there’s some enmity “in there” oil slicks on the water, like the proviso that America’s churches don’t have to be accessible; the word “reasonable” as it pertains to accommodations—as if any request for accessibility assistance is inherently suspect. Accommodations are just what they sound like, the Archimedean thing, simple levers.

I say the ADA is a river. I say we should sing Pete Seeger’s Clearwater song. I say the ADA is all of us—even you who don’t think disability applies at all to your life. The life you now inhabit takes twists and turns. And so your life is also like a river, one with vows bubbling just under the surface. I say the ADA is a river. I say you should look under the surface of your own life.

I like these lines by the Polish poet Czeslaw Milosz:

Leaning on a cane at sunset

I may resemble a gardener

Who has planted and reared a tall tree.

I say don’t think exclusively of the ADA as a set of regulations. Think of it as the river of new beginnings.

Yes we need to care for our river. There are those who would pollute its waters—have done so, continue to think of ways to foul it.

But hear the counsels of the inner eye and see the river.

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: “Blindness is Easy”

Blindness is easy, just ask the advocacy organizations—it’s only impediments are the public’s old fashioned attitudes. I agree. Oh but the public! How it clings to its graffiti! Here are synonyms for blindness from the good old thesaurus: “irrational”; “unperceiving”; “unperceptive”—there are many more pejoratives.

Being blind means always living the life of an ambassador for consciousness and intelligence in an unfavorable nation. The locals in that nation think deficiencies of the eyes are omens or auguries, as if blindness is the torn entrails of birds in the time of Caesar. Even the well dressed and cheerful Human Resources ladies and gents hear echoes of superstitions as they discuss “accommodations” with a blind job applicant. Inside the HR rep is a tiny voice, like wind whistling through a broken window, it says, “make her go away, please, this person is too much for me, for us…” (Too much, by the way, is the core syntax of all bigotries.)

Even within awakened disability advocacy circles, the sighted imagine blindness is separate. Closed captioning is often available when videos are shown at universities but never audio description for the blind. If you raise your hand and ask for it, there’s a moue of impatience, even from the faculty who teach disability related topics. “Too much.” Or: “your time hasn’t yet come.”

Blindness is easy once you get the hang of it. You learn about talking computers and Braille displays, learn how to safely navigate the public square, take the bus, (if you’re lucky enough to live where buses run) have an iPhone with an app that reads signs and the labels on jars.

Easy isn’t quite the right word, let’s say it’s “do-able” but add the caveat that being ambassadors in the unfavorable land, the blind must make it all look easy, must insist that it’s so.

I’ve been lucky to have a job in higher education for thirty years. I’m even tenured which is statistically unlikely. But here I am at 65 still arguing for basic accommodations not just for myself but for all blind staff and students who choose higher education as a path. I’m the haruspicator—the Roman who spreads the bird entrails on hot stones and reads the future according to the spatter. The future will only be as good as the public finally entertaining that the blind belong. Not as ambassadors or outliers. Not as people who have to keep insisting on access to everything from web sites to libraries, but as fully included human beings.

We’re not unperceiving unless of course you show films without audio descriptions. My university has no plans to solve this. I get invitations to their annual “disability rights film series” and every year it’s not accessible for people like me. So I don’t go. Later I hear three wheelchair using students exulting about a flick they saw. I get to be the unperceptive one.

Talking back is nested within ambassadorial protocols. You can’t say you’re fed up. (Which I have.) Can’t say “why do the blind get no respect?” (The Dangerfield gambit?) because if you do, then you’ve violated the prime directive that it’s supposed to be easy—the blindness balm of Gilead for the sighted…

You can’t say “when is our time coming?” Because then you’re a behavioral problem.

Can’t say “here comes the man or woman with the dark glasses and the cymbals….” A nice pun. But you’re not supposed to be loud.

The blind in higher education largely have a rotten time.

I suspect at any moment the doorbell will ring and the central scrutinizer of advocacy ambassadors will take away my diplomatic instruments.

Meanwhile other synonyms of blindness are “dim”; “obtuse”; “dull”; “witless”—all of which mean you don’t have to listen to me, even if I am a full professor.