Beauty, Disability, and Life Itself

I am a writer who speaks about the importance of disability as a dynamic of power which means I believe cripples are at the center of life itself. Perhaps another way to say this is that life is imperfection regardless of whatever Richard Dawkins might say. (Dawkins understands DNA as a purity symbol rather than a concatenation of genetic mistakes.) (One may think of Dawkins and all social Darwinists this way.) (It is altogether splendid to see Jeremy Bentham taxidermed with his head down by his feet.)

Disability is life itself. Not an idea about life; not a held breath and a prayer; not a shrug or shudder. As the poet Marvin Bell once put it, life will blow you apart. I’m often in the position of urging the temporarily normal to admit that life is nefarious, thrilling, dark, urgent, and never without dynamism. All the sad metaphors employed against disability are failures of the intellect.

The random errors which produce “junk” DNA–the mutations in our genes, are in fact, wait for it, “random.” Richard Dawkins is weak in this area as he prefers the ghost in the machine that’s always looking to improve itself, an idea which no respectable paleo-geneticist believes.

Disability is neither good or evil. It’s a natural fact. And it makes for beauty just as anything will if it’s understood properly.

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 us 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, doing it nearly as much as he masturbated, 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.

As 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.

Dear young Cripple: 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.

Yet I declare cripples are beautiful and we’re at the whirling heart of this life and never at the edges of the constellations.

The old tree has died…morning notebook…

The old tree has died—
She lived for seventy years
I hold her last apple

**
In general its always morning for me
Even in middle of the damned night

**
“What’s morning like for the blind?”
“It’s opportunity you dumb fuck.”

**

If I telephone you later
I’m going to say the same thing
The lepidopterist has bad breath

**

Canio’s laughter as rendered by Caruso is bitter and sinister. No one has equaled that laugh on subsequent recordings.

**
The freedom of notebooks:
No more diurnal hernias

**

Ezra Pound who was a loony as a bag of fleas
Said “The Metamorphosis” should be read
As a primer on narrative—
Poof!

I woke early and drank a glass of water…

There was a village in Finland when I was a boy…
You can’t escape intravenous comedy…
Now and then someone recommends a book…
Kid gloves should be “kind gloves”…
A friend called yesterday and shared an aria…
It’s been years since I last stood on my head…
It was in Berlin
Right there on the Alexanderplatz…
No one saw it…
Silly to think on it—
But I’ve always been happy
Even in the psychiatric hospital…
It’s a faint taste at first
Behind the tongue…

Thinking of Rousseau on a Rainy Morning

If like me you’re disabled you’ve probably thought about being cured. As I’m blind this would mean having 20/20 vision. I don’t think about it much, but when I do I picture myself on a motorcycle, letting it rip. This is a personal version of fool’s gold.

The idea of “cure” is painful for the disabled. Medicine says we must be fixed or be seen as permanent defectives. Most of us cripples have been told we’re faulty over and over. It’s not “cure” one wants, its freedom from being flawed and suspect in the village square. If I could see and take off on a Harley I’d still remember the struggles of this disability life.

**

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.

“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 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 altered physicality and neurodiversity offer unique and valued ways of thinking. What’s different now from Rousseau’s time is that 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.

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.”

Still Don’t Know a Thing

Still Don’t Know a Thing…

I didn’t watch Gilligan’s Island
But I read Basho
The suicide kid in a psych ward
Read “The Narrow Road to the Deep North”
“Sitting quietly, doing nothing,
Spring comes, and the grass grows, by itself.”

Outside the hospital
When the new grass came
His heart few up like a starling
And he read: “There is nothing you can see
That is not a flower;
There is nothing you can think
That is not the moon.”

Even now after fifty years
Not knowing the name of a tree
I know its sweet scent
And the bird flower moon
Of breath
“Hidden and unknown
Like the new moon
I will live my life”

If you dream like the blind…

You’ll see the Czar’s embroidered pillow
Gold and red by candlelight

The dreamer says: I can smother him
Just watch…and Boris Gudonov’s clock

Ticks just off stage
Like Braille

“C’mon,” says Carl Jung,
“You did it,”

“We gotta get back to the minotaur’s house…”
But the dream goes on

Alexander Palace
A hive, a loom

The despot growing cold, face up
Windows open

One can fly straight out

I woke early and drank a tall glass of water…

There was a village in Finland when I was a boy…
You can’t escape intravenous comedy but you can try
Now and then someone recommends a novelist
Kid gloves should be “kind gloves”—leave the goats out of it
A friend called yesterday to share an aria
It’s been forty years since I last stood on my head
I was in Berlin when I did it
Right there on the Alexanderplatz
No one noticed
“Nothing must happen to you / No, what am I saying, / Everything must happen to you / and it must be wonderful.”
—Bodil Malmsten
Silly to think on it
But I’ve always been happy
Even in the psychiatric hospital
It’s a faint taste at first
Behind the tongue

The fence falls over, wind rattles the house…

The fence falls over, wind rattles the house
Baking bread and the oven door groans
Don’t worry little dog, it’s just the entropy blues

**

Walking in a light rain
The word “cauterize” hits me
As in “cauterize” the poetry feet

**

My maternal grandfather built some of America’s first motor cycles and motor cars. He was wild. He aimed a shotgun at a porcupine and shot himself in the head. He said: “ricochet—just a flesh wound…”

**

Blind why do I like dusk so much?
Why does ether love morphine?

**

American happiness is a strange addiction, washed with medical narratives with their political and commercial directives to overcome what ails you, but you see, the psyche knows all along you can’t live that way.

**

Just the entropy blues
Good morning how are you?