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.   

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. 

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)


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

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

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

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

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

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

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

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

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

The ADA @ 30: “The Happenstance Blues”

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

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

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

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

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

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

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

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

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

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

Now back to my happenstance blues…

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

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

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

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

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

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

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

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

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

I also wrote:

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

I concluded:

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

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

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

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

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

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

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

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

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

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

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

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

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

Steve Wright, again:

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

The ADA @ 30: Thinking of Rousseau

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

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

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

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

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

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

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

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

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

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

I’ll let Rousseau have the last word:

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

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