Category: Disability News and Views

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.

As I grow older my hands open more slowly…

My hands are today helpless. I used them to vote against fascism just last week. It was foolish of my hands to think they had power. Today my hands are grieving and their grief differs from that of the head or heart: my hands are those of a sailor who desperately wants to put the ship on the right course—hands that are educated, seasoned, and moral.

As I grow older my hands open more slowly. Maybe they know more? What’s empty turns its face to us, said a good poet, long ago. My hands read Braille poorly. My hands which have touched Marcel Duchamp’s bicycle wheel. Hands that pull the voting lever for freedom.

There are several good books about hands. One of my favorites is “Victorian Hands: The Manual Turn in Nineteenth Century Body Studies” edited by Peter J. Capuano and Sue Zemka. Hands are transformed by the industrial revolution—they become vulnerable instruments seemingly designed through evolution to operating machines. They are all too often dismembered. Hands become “throw aways” as much as anything else.

My hands are today helpless. I used them to vote against fascism just last week. It was foolish of my hands to think they had power. Today my hands are grieving and their grief differs from that of the head or heart: my hands are those of a sailor who desperately wants to put the ship on the right course—hands that are educated, seasoned, and moral.

What about the hands of those who voted for fascism you say. These are the descendent hands of industrial labor, desperately caught up in the machines of their own doom. They voted, essentially, for “throw away” hands.

My favorite poem about hands is by Jane Hirshfield

A hand is not four fingers and a thumb.
Nor is it palm and knuckles,
not ligaments or the fat’s yellow pillow,
not tendons, star of the wristbone, meander of veins.

A hand is not the thick thatch of its lines
with their infinite dramas,
nor what it has written,
not on the page,
not on the ecstatic body.

Nor is the hand its meadows of holding, of shaping—
not sponge of rising yeast-bread,
not rotor pin’s smoothness,
not ink.

The maple’s green hands do not cup
the proliferant rain.
What empties itself falls into the place that is open.
A hand turned upward holds only a single, transparent question.
Unanswerable, humming like bees, it rises, swarms, departs.

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: “Nightmare”

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

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

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

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

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

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

Truth is, the disabled have to fight like hell. 

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

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

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

So I had a nightmare. 

The ADA @ 30: “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: 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 “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.