Category: “Disability” News

Living Beyond Disability: A Poet’s Reflection

I grew up on a steep divide but it wasn’t geographical. Instead it was a ridge or a chain of mountains both inside and outside me. I didn’t wish to be blind. I wanted to play baseball. And perhaps, more significantly, I wanted to be a scientist. Neither baseball or physics would happen for me. I became a poet. Compared to physics I think poetry is easy. All you have to do is step barefoot on a worm like Theodore Roethke, and you’ve got a poem. Poems fall out of cupboards like a box of starch loaded with spiders.

A popular phrase in advocacy circles is “embrace your disability”—but I’ve always thought the “d” word too mountainous for a hug. No one who’s disabled experiences a singular thing—a kewpie doll of physical difference that can be clutched to the chest. No. You can’t embrace your disability because, in fact, it’s a chain of mountains—highly articulated peaks with physical and metaphorical obstacles. I can’t stand it when I hear someone say “embrace disability”—one might as well embrace the Grand Tetons.

But I have another reason for hating the phrase “embrace disability”—one thinks of how difficult “embraces” really are for the disabled whose hopes for love and sexual life are often next to impossible.

Do you embrace your human loneliness and the near impossibility of intimacy with others?
Do you embrace your unemployment? The erosion of rehabilitation and health services?
Or the fact that doctor’s offices in the US are largely inaccessible?
Or that colleges and universities are woefully trapped in a 1970’s model of disability services?
Or that public transportation, especially airlines, treat you like a cockroach?

So I don’t like the word “embrace” which is just plain tomfoolery. And I don’t like “accept” because it’s too passive and vaguely defeatist.

Exult. Rejoice. Be rapturous. These are all too American. Don’t worry. Be Happy.

It just isn’t easy. The emotional rain isn’t gentle.

Once upon a time in Ithaca, New York, I encountered a man, a rather disheveled and clattering old man, someone the locals seemed to know, for we were in a diner, and he was going from table to table chattering with breakfasters, not asking for money, but essentially playing the role of the Id, sassing people, perhaps in ways they required, who could say, but there he was, pressing into each person’s space, piercing the psyches of strangers with his needle. He called a cop “Porky” and an elderly woman “Grandma” as he lurched steadily toward me. “Oh Doggy!” he said. “Doggy doggy doggy!”

Then he said, “What kind of fucking person are you?”
I tried my best Robert deNiro impression: “Are you talking to ME?”
He was not amused.
“A prisoner!” he shouted, for the whole diner was his stage. “This dog’s a prisoner!”

For a moment I felt the rising heat of embarrassment and rejection. Then, as he repeated my dog was a slave, I softened. In a moment of probable combat I stepped far back inside myself, not because I had to, but how to say it? Corky was unruffled. She actually nuzzled my leg. The nuzzle went up my torso, passed through my neck, went straight for the amygdala.

I smiled then. I said, “You’re right. And I’m a prisoner too.”

I don’t know if it was my smile, or my agreement that did the trick, but he backed up, turned, and walked out the door. Strangers applauded.

I’d beaten a lifetime of bad habits. I hadn’t fallen into panic, or rage, or felt a demand to flee.

I sat at the counter, tucked guide dog Corky safely out of the way of walking customers, and ordered some eggs. I daydreamed over coffee.

When I was eleven years old I fell onto a pricker bush. It’s hard to say how I did it, but I was impaled on hundreds of thorns. My sister who was six at the time, and my cousin Jim who was maybe nine, fell to the ground laughing as if they might die. I begged them for help which of course only made them laugh all the harder. I remember tears welling in my eyes and their insensible joy. I also knew in that moment they were right to laugh—that I was the older kid, was a bit bossy, disability be damned. I was the one who told my sister and cousin what to do. Now I was getting mine. My just deserts. In the end I tore myself from the monster shrub and stormed into the house. I sulked while they continued laughing outside.

Perhaps I thought, there in the diner, I could live henceforth in a new and more flexible way.

“Is it as simple as this?” I thought. “One simply decides to breathe differently.”

I saw, in a way, it was that simple.

Saw also how a dog can be your teacher. And while eating wheat toast I thought of the Buddha’s words from the Dhammapada:

Live in Joy, In love,
Even among those who hate.
Live in joy, In health,
Even among the afflicted.
Live in joy, In peace,
Even among the troubled.
Look within. Be still.
Free from fear and attachment,
Know the sweet joy of living in the way.

But you see, that’s the poet in me. It’s easy to imagine disabled life is a matter of grace.
And though I have these moments, I know I’m high in the Grand Tetons, still looking for a path.

And so I’m getting to my point. We are in the fight of our lives, all of us who hail from historically marginalized. This is a fearful time. I want to fight for us all. Embrace or don’t embrace your disability Stephen. Its all the same our there where so many are prisoners. Be better. Think a little bit about John Lewis. Think of good trouble. Right now the emotional rain is toxic. Get your umbrellas.

Hail to the Crippled Writers

Yes optimism for the wretch is a dyer’s art but it must be farcical in its hope. (Think Shakespeare’s Bottom.) One must be ridiculous in the boot black factory.

Let’s celebrate what for lack of a better term one might call the optimistic imagination as practiced by wretches. I’m in mind of G.K. Chesterton’s assessment of Dickens, that he was: “delighted at the same moment that he was desperate. The two opposite things existed in him simultaneously, and each in its full strength. His soul was not a mixed colour like grey and purple, caused by no component colour being quite itself. His soul was like a shot silk of black and crimson, a shot silk of misery and joy.”

Yes optimism for the wretch is a dyer’s art but it must be farcical in its hope. (Think Shakespeare’s Bottom.) One must be ridiculous in the boot black factory. (Dickens-Chaplin.) This is the thing, likely a tee shirt slogan: we hope in misery. As for the literary imagination printed ideas are invariably sad even when they propose optimism and no honest writer can ignore it. What did J.P. Morgan’s library smell like in 1902? Short answer? The vapors of sorrow.

A game I play, more often than I should admit, is a dramatic transference for which there may be a name but I’ve never found one. Perhaps there’s something in German. In short, I employ the characters of Shakespeare and Moliere as standard bearers for people I meet and especially for  public figures. The literary term for this is “comparison” but what I’m describing is better than that—“kayfab” is what they call it in professional wrestling, where everyone, both wrestlers and fans collectively pretend a false drama is real. Essentially I live and have always lived since my late teens in Tartuffe and The Taming of the Shrew and at this stage of life there’s no help for it. This is comedy as it’s lived but not necessarily admired. Moliere:

“The comic is the outward and visible form that nature’s bounty has attached to everything unreasonable, so that we should see, and avoid, it. To know the comic we must know the rational, of which it denotes the absence and we must see wherein the rational consists . . . incongruity is the heart of the comic . . . it follows that all lying, disguise, cheating, dissimulation, all outward show different from the reality, all contradiction in fact between actions that proceed from a single source, all this is in essence comic.”

Both Moliere and Shakespeare grew up watching morality plays, fables whose stock characters were invariably named God, Death, Everyman, Good-Deeds, Angel, Knowledge, Beauty, Discretion, and Strength. Because they lived during the first flowering of public literacy they understood the indispensable healthiness of word flipping. Talk about nature’s bounty! Words were no longer merely to be received and absorbed. Can you imagine the joy of a 17th century adolescent forced to watch Everyman or The Second Shepherd’s Play, as he substituted Satan, Life, Neighbor, Sin, Second Rate Demons, Ignorance, Ugliness, Gossip, and Basic Human Weakness for the stock characters of religious drama? Of course you can. Almost no one who’s lived through a high school production of The Man of La Mancha has not done this.

Comic irony is when you recognize the impostors beyond their appearances on stage. The characters in Tartuffe are at every holiday party. They creep through the workplace. Confidence men, hypocrites, exceptionally vain head cases, the credulous, and all who make their living feigning virtue. Ah, nature’s bounty indeed!

By living Moliere I reside in kayfab—I know the world may be better or worse than this adoption, but I can bear my illusions for not to live in Tartuffe would be, at least for me, unsupportable. Comedic representation is healthier than plodding credulity and more philosophical since incongruity is the mainspring for understanding the irrational. If you’re following me, you’ll say my proscenium of custom if it’s all Moliere, all Shakespeare, all the time, is a matter that must by necessity make me unreasonable. I prefer this to any conversation with the human resources crowd or political canvasers or god help me, professors at a conference. I’d gladly sip the milk of custom and spit it in a potted plant than talk to Orgon or Tartuffe. Contradiction isn’t a customary beverage. It’s milk and iodine and it’s healthier for you than any drink Madame Pernelle will offer.

Shakespeare was the first comic writer to dramatize reverse psychology as Petruchio, a wandering nobleman, undertakes the wooing of Kate who’s notoriously short tempered and cruel:

“Say she rail; why, I’ll tell her plain
She sings as sweetly as a nightingale.
Say that she frown; I’ll say she looks as clear
As morning roses newly wash’d with dew.
Say she be mute and will not speak a word;
Then I’ll commend her volubility,
and say she uttereth piercing eloquence.”

We are the ones invited to say she rail; we’re instructed to become as devious as Petruchio. Taken into his confidence we’re delighted by his promissory book of lies.

That’s optimism as comedy. Not as a vehicle for pratfalls or put downs, but discernment and the vanity of hope.

Hope is comedy. The sadness of the world is irrational. This is how I live. I think of Auden’s line: “All we are not stares back at what we are.” If an empowered disability identity is “out” and on the street it’s ironies are inherently complicated by the acculturated language of normalcy. This is both a signature subject for performance theory and disability studies. It is also the seed bed of literary consciousness. Watch out! The crip writers are comics.

Ableism, or, Shaming the Shamers

Ableism doesn’t have to be conscious. Like racism, homophobia, misogyny, it works from a set of assumptions. The first is that disability is someone else’s problem—a holdover from Victorian society which created specialized hospitals and asylums for the disabled. In higher education they still believe there should be a sequestered office that “handles” disability which in turn means most deans, faculty, and administrators have a collective view that the disabled are both a problem and they belong to someone else. Professor Jay Dolmage’s book “Academic Ableism” provides a clear overview of how this dynamic works.

Another assumption is that all disabled people are singular—they’re all medical problems—defective patients who couldn’t be cured. This medical model of disability creates a set of cascading metaphors, the most insidious of which is the idea that a student, staff member, even a visitor with with a disability needing an accommodation is a solitary, individual “problem” which in turn means they’re not respected and valued. We hate problem people in America.

I’ve been asking for accessible websites and digital teaching platforms at Syracuse University for well over a decade. Imagine! Asking for accommodations that are required under the Americans with Disabilities Act and getting nowhere! And yes, rather than fix the problems, many in the administration have labeled me as a malcontent.

This is when ableism becomes a conscious thing. When you say that the disabled who are true advocates for inclusion are problematic you’re making a choice.

I am hereby shaming faculty everywhere who make such choices.

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 “Disability and Design Justice”

The Marxist art critic John Berger said: “That we find a crystal or a poppy

beautiful means that we are less alone, that we are more deeply inserted into

existence than the course of a single life would lead us to believe.”

Lately as I’ve thought about the ADA @ 30 Berger has come back to me. Beauty and the single life. I admit I’m less certain this is our only life. But the ADA is beauty and it does mean “we” the disabled are less alone. Who thinks of law as beauty? It’s far easier to look at a poppy. 

The law is beautiful when it advances freedom. Freedom is beautiful when it’s everyone’s birthright. Civil rights laws are about guaranteeing freedom to the newcomers in our world as well as the aged. John Locke wrote: “The end of law is not to abolish or restrain, but to preserve and enlarge freedom. For in all the states of created beings capable of law, where there is no law, there is no freedom.”     

This is the heart of the matter: before the ADA the disabled had no freedom. After the ADA we’ve the right to insist on it. We’ve the right to join the millions upon millions of Americans who are insisting. 

Of insistence I’ve always loved this quote from Alice Munro: “It was a most insistent place but nobody seemed to be overwhelmed by all the insistence.” 

I’ve now said two improbable things: the ADA is a kind of beauty; the ADA is a place of insistence. 

These are things I ardently believe. 

In her new book “Design Justice: “Community-Led Practices to Build the Worlds We Need” Sasha Costanza-Chock puts together the beauty of design, the insistence of inclusion and imagination, and human rights—proposing a powerful reformation of how we think about the built worlds we live in. She outlines the formative principles of the Design Justice Network:

“Design mediates so much of our realities and has tremendous impact on our lives, yet very few of us participate in design processes. In particular, the people who are most adversely affected by design decisions—about visual culture, new technologies, the planning of our communities, or the structure of our political and economic systems—tend to have the least influence on those decisions and how they are made.

Design justice rethinks design processes, centers people who are normally marginalized by design, and uses collaborative, creative practices to address the deepest challenges our communities face.”

Reading this I sat bolt upright in my chair. 

As a blind man I’m one who is normally marginalized by design. Double entendre intended. 

That’s not the first passage to catch my eye. Sasha Costanza-Chock describes in almost withering detail her experience attempting to pass through an ordinary TSA airport screening. She’s non gender conforming. The body scanner with its AI and algorithms flags her. She becomes a public display, a crisis, a freak, a debased citizen. The built environment creates pejorative values for non-normative bodies. Don’t I know it? I’ve walked through thousands of airports with my guide dogs, always on edge, frightened of what’s coming next since the TSA is not kind, not welcoming, often untrained, many times malevolent when I show up with a dog in harness. I’ve been screamed at, pushed, yanked. I’ve had uninformed agents demand that I take the dog’s harness and training collar off—things entirely unacceptable. I’ve been pointed at and made to stand around for nearly uncountable minutes while agents confer about the ADA. One impatient woman shoved me because I was in her way and she wanted her suitcase. 

Participation in design processes is crucial just now, right here and now, for the very designs by which we live are being transformed before our eyes. 

Design justice means we are less alone. 

Let’s not be overwhelmed by the insistences.   

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 or “James Tate’s Egg”

When I was in my early twenties I read a lot of poems by James Tate. If you’re an American who’s interested in poetry and you’re over forty there’s a good chance you’ve visited Tate’s poignant, Da-da universe where dark alleys and cemetery willows remind a man to have a cigarette; where Sam Beckett’s people enter cereal naming contests; where only a dish of blueberries can pull you out of a lingering funk. Somewhere in my reading I saw a line about a man who feels like a fried egg has been glued to his forehead, which is to say, he walked around that way. There I was, blind, in college, cross eyed, the streets before me erasing themselves as I moved, lonesome, stamped by the U.S. Department of Alienation, hyper-aware that a cutting remark would be coming my way any moment. I knew Tate’s fried egg was my third eye, my sunny side up stigma. Disability can feel like that.  

When we, the disabled discuss the biopolitics of disability, which is to say, the economic and political performances and entrapments of disablement, it often seems, at least to me, we’re talking about eggs and foreheads as much as anything else. What kind of egg will it be? Will you cook it yourself or will someone do it for you? Just so, will you self-apply your egg or have it done professionally? (I’m not metaphorically describing disability but the stances one must take because of it.) And there’s more: will it be a free range organic egg or from a factory? Perhaps if you’re lucky it will be cooked just right. 

The neoliberal egg-on-forehead (hereafter NEOF) is like the cereal naming contest above–you have to pay to win and while you may be named Estragon you’re reliably in the game because it’s now an inclusive economy. In the bad old days you’d have been forced to live in the NEOF asylum but suddenly you have putative value. A productive, non-normative worth has either been declared or assigned. You round up your pals who once lived in the ward with you and together you create a federation. You’re online. Christ, you even blog. You belong to a Single Condition User Group. You’re no longer just a person with egg on the unibrow, you’re informed, itchy, talkative, contrary, ardent if not militant. 

In their groundbreaking book The Biopolitics or Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment, David Mitchell and Sharon Snyder point out that: “as medical citizens within neoliberal biopolitics we are expected to take active control of our health management regimes to a greater extent than in any time in history. This active control taking health represents the double-edged sword of biopolitics and results in the desperate necessity of participating in funding initiatives on behalf of physicians and researchers to provide the missing profit motive for future investigations of potential medical treatments for members of rare condition groups.”

You were in a special hospital not so very long ago but now you’re an anguished expert on forehead eggism because you must be. You must be because either you’ve a job and want to keep it (you’ll need an accommodation—you can’t wear standard issue hats) or you hope to have a job—or jobless, you wish to have community relevance, which means among other things you should have the right script memorized. 

I for one commit to memory a lot of self-declarative language. Yesterday I went to the ophthalmologist. I told him all about my eyes. In ophthalmology land I’m a failure. You mustn’t imagine eye doctors view low-to-no vision patients as successful and autonomous citizens. I felt the need to take care of myself and control the medical narrative to the best of my ability. I wasn’t an uninformed blind person. I wasn’t in need of rehab. No. That’s not a laser scar on my left retina, that’s what it looks like. You see, I don’t need to be cured, and even if that’s something in the cards it’s not happening today.

As we think of the ADA @ 30 let’s not sentimentalize the limited inclusion of the disabled on our city streets. The disabled are bio-politically imagined by normative systems to be in need of cures if they’re to be successful. The ADA is a buttress against discriminatory practices but it can’t defeat the long history of medical prejudice. “Let me cure you” is a horrific phrase, often a precursor to real tragedy. One thinks of Nathaniel Hawthorne’s story “The Birth-Mark” or the dreadful vignette in “Madame Bovary” where the small town physician kills a man with a club foot because he’s a man of science. 

The ADA @ 30: Thinking of Auden

The poet W. H. Auden wrote: “Educational theory begins when society has become differentiated, when different classes are living so differently, and doing such different things that the question arises: ‘What shall we teach and to whom?’” 

I have been in mind of this straightforward question for some time now, especially as I’ve been wrestling with the deficiencies of my own education, and in particular how that education relates to disability. As Auden might have it: ‘What was I taught and who did those teachers imagine I was?’” 

The answers depend upon whether or not you believe the nature of society is static—which is to say whether you think social relations where disability is concerned are changeable. Here I am piling a question on a question. Can disability ever slip the knots of ableism and be understood as a fully dignified dynamic of cultural life? (I take it as given that disability is no better or worse than any other fact of life.) 

Okay. Since I don’t think society is static, at least since the time of Rousseau (everywhere we are in chains, post-innocent, and humankind is collectively capable of freedom) I think disability rights are a barometer of progress. Civil rights reflect modernity’s belief that all individuals are unique. After Freud all people are unique. If so, then good old Jeffersonian law must assure our unique equality. 

Now imagining the law could guarantee my dignity was foolish yet I’ve been guilty of this variegated disappointment, of letting it get to me, for a long time now. How long? Since the mid 1980’s when the Americans with Disabilities Act was being built. Like millions of disabled in the U.S. I thought the adoption of civil rights meant throwing off chains. I allowed myself to believe this. I know I’m not alone. 

And here is where my education failed me, my high modernist, early post-modernist, calculating small “d” democratic, structuralist-psychoanalytic education—it failed me.  Teachers failed me. I was allowed to believe the law could take the place of civics. Of civics I was taught nothing save that every citizen will be equal under the law. Here is the specific failure: I was taught that individualism is the core of identity, that identity is the well spring of citizenship, and that laws will take care of equality. Of course I read Foucault. I understood the  precarity of life under the state, saw how language can and often does fail us. 

Nothing in my education prepared me for structural ableism. 

For years I’ve allowed myself to believe that my eloquence, my irony, my belief in the law, would mean success where disability is concerned, and by this I mean “as lived” and by this I mean “in the workplace” and accordingly I have been navigating without some important details. 

You see I thought the law and self-declared dignified individualism were all I needed. These things are not without their importance, but they weren’t enough. 

I’ve been physically assaulted in the workplace; denied accommodations; told during meetings that my need for accessible materials would slow down progress; told to “get in line” behind other non-disabled faculty when I needed sighted a grad assistant; been lectured to by so many overtly ableist administrators about the difficulty of disability—how it gums up the works of the system—this is a long list, forgive me—and in all cases I imagined my capacity to be clear, direct, and persistent would solve the problem. That was my deficiency. From my mid thirties onward, believing overmuch in the ADA and the power of my language, I failed to see how profoundly ableism cuts down the disabled, even in the most self-declared progressive work spaces. Yes it’s a matter of note I’ve been making my way in higher education.  

Boo hoo for me, didn’t everything I ever read about oppression allow me to see the deep and broad discriminatory practices in the big bad world? Of course. But my mistake was to think, to allow myself to think that equality for the disabled had come. 

How foolish I feel. Worse, how beleaguered I am after years of being treated badly as a disabled student and scholar. 

Ableism is ubiquitous. Higher education is rife with it. It’s in the street. It’s on the bus. It’s in every corner of the civic square. It is an unholy master in the world of American medicine. Ableism is  shrugs, hoots, snickers, red tape, ugly information technology, badly designed airplanes, inaccessible voting places. It’s what’s for breakfast. It exists in the classrooms, the technology labs, the science classes, the lecture halls. It is so customary in higher ed that it’s no wonder three quarters of students with disabilities who matriculate to college never graduate.   

So what’s to celebrate? 

Ableism is finally being talked about. 

Design justice is being advocated in many places.

The ADA is still standing at 30.

These are life affirming flames. 

Back to Auden.

Self-interview, July 26, 2020 “The ADA @ 30”

Self-interview, July 26, 2020 “The ADA @ 30”

Q. What does a poet know about civil rights? 

A. Who “allows you” to know beauty? That’s the foundational question of people who want their freedom. It’s a variant of Gore Vidal’s wonderful axiom: “Politics is knowing who’s paying for your lunch.” So if I, as a blind writer and teacher can’t get access to books and articles because they’re not accessible then I’m being kept from knowledge, which I understand in the Enlightenment sense to mean beauty. And children in cages on the Texas border are being kept from books and ideas—not to mention they’re being warehoused without their parents during a lethal pandemic—but you must understand, take away access to beauty and you’re on the road to completely dehumanizing people.

Q.   Why do you like Gore Vidal? 

A. Gore said: “The United States was founded by the brightest people in the country — and  we haven’t seen them since.”

Q.   What’s wrong with the current ADA @ 30 articles you’re seeing in the news?

A. The Washington Bubble Machine is pretending that the ADA is “still” a milestone. But it hasn’t been a success where jobs are concerned. While the term “reasonable accommodation” aims to show employers that retro-fitting a job for a disabled employee is readily achievable and inexpensive, the term is frightening to employers. 

Q.   Why is it frightening?

A. (Invoking Gore Vidal) because Americans hate the word “reasonable.” What we really believe is: “It is not enough to succeed. Others must fail.”  

Q.   So why must the disabled “fail” in this instance?

A. See above. Americans hate the word “reasonable” and as soon as they hear it they small a rat. Let me give you an example. In the late 1990s I was working at a famous guide dog school and one day I got into a conversation with two top executives—both of them “non-disabled” (whatever that means). They were arguing about the cause celebre of the moment, the case of the disabled golfer Casey Martin who had sued the PGA because they said he couldn’t use a golf cart during professional matches. Martin could hit a golf ball but he couldn’t walk distances. Martin took his case to the Supreme Court. My non-disabled colleagues were hot to argue that riding a golf cart fundamentally alters the nature of golf. I said, when you golf do ride a golf cart? Yes, they said. So are you really golfing if you ride a golf cart, I asked. Oh yes, they said but in a pro tournament it’s the walking from green to green that makes or breaks a golfer. I said it didn’t sound convincing at all. The Supreme Court agreed with Martin. Opposition to his participation was tricked out in the lingo of fairness and competition but what the PGA was really saying is that no one in America likes the word “reasonable” because of course the secret adage of our nation is “It is not enough to succeed. Others must fail.  

Q.  Are you always such a pain in the ass?

A. Yes. 

Q.   What would be better than the term “reasonable accommodation” in your view?

A. That’s a great question. I like the term “usability” which means can an employee use the stuff they give you to do your job. Since Americans hate the word “reasonable” let’s just say that all workers get to inquire about the tools they’re using. We can call it any variety of thing, the utility index, the Craftsman Cantata….the point is that when we ask people to perform tasks we should give everyone the opportunity to select the right tool for the job. I call that reasonable. 

Q.   Do you want to add anything at this point?

A. Yes. Higher education has a lot of trouble with disability. Lots of colleges and universities can’t imagine disability as being part of their understanding about diversity and inclusion. Gore Vidal again:  “The important thing is not the object of love, but the emotion itself.” Offices of diversity and inclusion on campuses have no love in them only the rhetoric of objects. When it comes to the rhetoric of objects the disabled are a real problem. 

Q.   And why is that?

A.   Because the disabled are “not” their wheelchairs or guide dogs. We trouble the insistences that difference is strictly about embodiment. We trouble everything. And we tend to know who’s paying for our lunches. 

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.