The old woman beside the Oyster River, who picked flowers; who the children knew to be peculiar–someone said the word “lobotomy” though no one knew what it meant–how he’d made up a story about her so long ago.
That woman with her florid face, who talked to herself, she took in stray animals. Now he sees he’s old as well, sees stars are of a different magnitude, and still, he thinks, someone has to take the lost creatures because the world is both desolate and easy.
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 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.
When I was a kid I fell in love with a Victrola in my grandmother’s attic. What was I doing up there? It was summer. Kids were playing ball. And there I was with a wind up gramophone with a metal horn. Blind kid alone with an old fashioned record player at the top of a Victorian house. I fell in love with that machine. It worked perfectly and there were dozens of records featuring the great Enrico Caruso. You have to picture me, five years old, a little lonely, and then stunned to hear such a voice under the eaves. I’ve loved Caruso’s voice all my life and yet, even now, sixty years later, hearing him pulls me back to my provincial first opera house.
There were lots of artifacts in that attic. A raccoon coat, a sea captain’s chest, a cracked boudoir mirror, cane chairs that were eaten through, dusty books, a sewing machine, oddments of all kinds, tools I couldn’t identify. I explored with my hands while the great tenor sang of vengeance or a broken heart.
Think about your private opera. I was lonesome as a cricket. I was in love with a strange singer.. Best of all I’d no one to tell.
I still hear the needle hitting the record. The sound of hay scratching hay.
In my case poetry has always been a kind of forsakenness. The solitude glitters. Do you know this feeling? Rain runs down the window and you press your forehead there. You see you need nothing.
D. H. Lawrence wrote: “It’s no good trying to get rid of your own aloneness. You’ve got to stick to it all your life. Only at times, at times, the gap will be filled in. At times! But you have to wait for the times. Accept your own aloneness and stick to it, all your life. And then accept the times when the gap is filled in, when they come. But they’ve got to come. You can’t force them.”
Yes there are moments when the fire warms and the inn is open. Family and lovers; neighbors, strangers well met—a trusty dog. Behind this scrim is the solitude. It was me. It was the voice of a tenor singing in the dark.
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.
In Finland they’re hunting for mushrooms and berries—
Time to make the old soup.
Here in America I stare at my hands.
I write some words about faith.
Last night a stray dog came to my door.
Summer will be ending soon.
Sometimes a poem is a way of sitting at the end of a bench
With an imaginary cap over your ears.
Which hat will I wear this winter?
I’m the king of the unswerving.
Watch as I whittle this stick.
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”
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.
Finnish proverb. Dear child. Iris.
Buttercup. Mockingbird.
Mouse behind the chanterelle.
So what the clouds are low?
See how the grass waves?
Throw open all the doors.
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.
Planet of the Blind 