Those Old Contours of Ableism

Disability is everywhere once you learn to look for it. Elvis Presley had continuous high grade pain the last ten years of his life. Samuel Johnson was legally blind, suffered from seizures, and may well have had a variant of Tourette’s Syndrome. The people in my neighborhood are touched by disablement. Some show it. Others do not. Normalcy, the belief in it, the animadversion to live it or else is the most destructive fiction in the world. What does it avail me to say so? And why do I keep saying it?

In her excellent book The Contours of Ableism (an elegant title I think) Fiona Kumari Campbell imagines the structural and attitudinal dispositions against the disabled as residing within a telos or set of illusions that maintain the non-disabled identity. When I write against disability discrimination and the privilege indexes of ableism I’m engaging in the work of all disabled activists by asserting the truth of the matter:

“Ableism refers to: a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.”

Excerpt From: “Contours of Ableism.” Apple Books.

So if there are so many disabled people around why does compulsory normalization still rule the roost? The contours of ableism are protean rather than strictly geometric.

Fiona Campbell writes:

“Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in law), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.”

Excerpt From: “Contours of Ableism.” Apple Books.

One of the interesting things about ableism is that whatever form it takes it occupies the future perfect. There will be time enough to make things right for the non-normals but not today. One may fair say “not today” is the motto of the thing. Non hodie in Latin. Picture a flag bearing the image of an indolent house cat. Not today will we question our assumptions about the majority of bodies on the planet. Ableism also refrains from saying “maybe tomorrow.”

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Grievance in America, 24-7, No Matter Who You Think You Are

Americans are uncomfortable with their bodies which means they become militant when they claim the body as a marker of identity. I have done this. I’m blind. I’ve written extensively about the joys of being who I am. The body is not receptive to what I may say about it. That’s a sad fact. Society is only conditionally receptive to what I may say about it.

I identify as disabled. I have to. I’m not going to navigate the world with safety if I don’t use the proper accommodations for vision loss. Then I say, “I have no loss.” I claim my utility and Jeffersonian right to pursue happiness. I’m not lost. I don’t need to be found. I don’t need salvation.

When you claim your body in America you enter a honeycomb of some complexity. How many billions of dollars are spent on advertising that urges people to feel more than passing disdain for their very physicality? No, I don’t want to look it up.

I’m for all the body rights movements but I’m never tricked into thinking that by hugging my body I’m free of the contempt mechanism. It tends to have the last laugh.

If you claim to love your body but spend all your time hating the compulsory normative complex—you shouldn’t be gay; fat; a wheelchair user; blind; deaf; get a cure or purgative—you know the drill, you will spend your life railing against the dominant culture to such an extent you’ll become, quite possibly, a victim of your own identity rage and to such an extent you may not be able to function outside of a small colony.

Which leads me to the problem I’m struggling with. The small colony habituation of Americans who struggle with self-contempt, which is never overcome with slogans or cultural theories alone, lends itself to unhappy clusters of victimhood. This is fully democratized which means Trump voters, Bernie voters, civil rights activists of every calling, can all be classified as either potentially or fully against civics.

You’re not supposed to like your body. You’re encouraged to prefer happiness to the daily grind. Americans are conditioned to feel deprived of easy joy. Someone else is always getting happy. If you believe advertising, you’ve a big and weak superego. I think it was Kurt Vonnegut who pointed out that Americans have so much self contempt that when they jumped out of airplanes in WW II they shouted: “Well, here goes nohin’!” He also noted that the chief expression of interpersonal disdain in the USA is: “If you’re so smart why ain’t you rich?”

Enter Trump voters. Vonnegut would understand them. Trump both deflects and extends their self-contempt. They’re not happy because others are stealing their joy potential. They’re not rich and Trump tells them over and over it’s not their fault it’s because of foreigners or elites or people of color or you name it. “If you’re so smart why ain’t you rich?” becomes a license to bitch, rage, be violent, taunt anyone who you believe is in your way.

These ghosted body-contempt dynamics are equally true across the proverbial aisle. Bernie Sanders voters believe others are stealing their wealth, their autonomy, their hopes and dreams. Again it’s others who are doing this—and again there’s the license to bitch, rage, and taunt anyone you believe is in your way.

One sees this on the contemporary college campus where progressive students rage against multiple systems they believe are stealing their joy potential. Capitalism, classist society, patriarchy, big pharma, polluters—all of which are very real mind you—are given undue positions in the honeycombed privacies of the mind (to borrow from Melville) until, yes, one has a license to bitch, rage, be violent, and taunt anyone who you believe is in your way. I’ll argue that these reactions are deleterious to students for it gives them the false assurance that aggrieved identity is all anyone needs in the village square.

Body claiming is crucial as a first line of defense against racism, homophobia, ableism, misogyny, and all other commodified disdain for our physical lives.
But it can become amber to the fly. Grievance is in the glue. The best thinkers acknowledge oppressive systems and live beyond mere victimhood.

In a recent review of some new books about the opioid epidemic in the USA Emily Witt quotes a writer who goes by the moniker “Anxious Dope Fiend” who writes of the joys of oxycodone:

The oxycodone experience is difficult to describe to an opiate virgin. Personally, I feel as if I have suddenly gained all that I want in life and no longer have anything to fear. I am perfectly content both mentally and emotionally. All the tension slips from my body and I feel warm and utterly comfortable, as if I were sitting beside a roaring fire, wrapped in a delicate cashmere blanket, rocking gently back and forth. Communication is pleasant but unnecessary. Under the influence of oxycodone, no companionship is needed. I accept myself and the world just as we are, not begrudgingly, but eagerly, ecstatically even.

Is it just me or do any of my readers also wonder if this passage represents the perfect synthesis of grievance culture?

Disability Poetics: Essay Number One

Critical disability studies and crip studies seek to destabilize traditional modes of body analysis and affirm (perhaps an ableist trope) a post-static and unreferenced sense of bodies. I sometimes think of classic, normative bodies as vanishing before our eyes like Brigadoon. In this way I relish what Lennard J. Davis calls the end of normalcy. I like to say (because I’m a poet) that I’m not a blind man at all but instead a rider of dragons. The smoke I leave behind is poetry. It suits me. This is disability as epistemological fancy. This also suits me.

John Ruskin wrote: “The highest reward for a person’s toil is not what they get for it, but what they become by it.” I’m not so naive as to agree but where the spirit is concerned I’ll take it. Poetry and disability are snug together in the mysterious, rich, daily toil toward newer potentialities. If Ezra Pound was right and poetry is news that stays news one might say crippled poetry is the news which also invites you to turn the page. I’ll say the disabled are different over the course of the day. All disability is protean. We work with it and against it and we adopt multiple accommodations and no one knows more than the crips we’re not static bodies at all. By day’s end my dragon might be a gila monster. And I might be inapparent as twilight comes. Maybe all you’ll see of me are my pin prick glowing spider’s eyes—you know, those eyes that scare children on camping trips.

When I got my first guide dog back in 1994 the guide dog school made me sign a paper that said, among other things, that I wouldn’t use my guide dog for the purpose of begging. Imagine the back stories. I went home and wrote the following poem:

To a Blind Man Selling Pencils: New York City

And then, others arrived:
Eyes first, surveyors, important men,
Men who wore the flag—runners,
Who fill the streets in every town.
They carried sacks like thieves.
Every day such men feel their blood rise:
It uses them, returns them to the avenues
And I alone discovered them, one by one.
I was of the provinces. I was reflected
In their eyes like a fire.
Some men possess the color of origin—
The blind man is amaranth, aman-word of sorts,
A word that will be mistaken on earth.
Still I saluted the closed world
Without its consent,
Crossed the water of streets
And raised a sign
Unreadable as the moon.
My plea had the whiteness
Of things that have no use in life
And the words were Nothing more than a scar
That someone must have given me.
Why then did your name appear
Like the marks of a wheel
In this unyielding light?

What was I after? For one thing a reader response confusion between the able bodied starer and the thing stared at. Abjection is currency and it is exchanged to the detriment of both parties. Sighted people protect themselves from this by imagining they’ve not been changed by their acts of half conscious charity—but fear and beneficence are a losing hand for they suggest poverty and neglect are the yardsticks by which all people must be judged. Another way to say it is: if the disabled must represent society’s failures then you the apparently abled observer must be more than half in love with sufferance. The most often employed phrase for this is “there but for the grace of God go I.”

How many scars can the able bodied give the disabled? None if we say so.

A Perfectly Level Headed Note Now that I’m 64

I was born on this date 64 years ago. My twin brother died in the next room.
I was born prematurely by three months. I lost my vision in an incubator.
I’m aware that even today there are “bioethicists” who’d argue against my existence.
I know who they are. There are one or two at the university where I teach.
Sometimes I tell myself I know more than I used to. I know that not all Greek infants with disabilities were put out to die on mountains. I know that Oedipus means swollen foot and his story is a perfect disability dumpster fire. I know his story still haunts the blind. I know there are one or two at my university who believe the blind shouldn’t be on campus. Or the lame. Or the mute. They ruin a perfectly good agora. I know these things but care less about them since I know the arc of history bends toward disability justice. I really do believe that. I also know that universities hate hiring the disabled. I believe that will change. I have to believe these things. Tap your shoes together three times Dorothy. Sam Cooke: “A change is gonna come.” And maybe not today. On the other hand….

What the Imagination is For: Reflections on Boyhood Cruelty

I make jokes like most people. When I was young I made some cruel jokes as I was bullied for my disability and I looked for children more vulnerable than I was in order to humiliate them and gain a modicum of status. Status is a fragile thing when you’re twelve years old. Having it or not depends on the temporary love of brutish schoolmates and in my case gaining this required art. I remain ashamed of the story I’m about to tell. I make no excuses. If being a blind kid in public school was rough, if I was pushed down stairs, if my glasses were stolen, if I was targeted with nicknames, well so what? I was clever and desperate.

I picked out a kid who sat next to me in math class. His name was Norman and that was bad enough. But he was also gangly, awkward, ill at ease in his skin–just like me. Talk about Carl Jung’s “shadow”–I saw in him everything I hated about myself. He wore maladjusted spectacles and had uncombable hair. There was really nothing wrong with him. It didn’t matter. I could see he was defenseless. He stammered slightly. He was shy. He became my target.

What did I do, you ask? I made him legendary. I drew cartoons depicting him as an ostrich boy with a bird’s body, a periscope neck and a wide grinning face and I named this creature “Normanure.” I even made fun of his stammer with a cartoon bubble that said “Duh!” Though I could scarcely see I could draw serviceably and quickly. I plastered Normanure all over the school. This ugly episode lasted about a week before a school official caught me sticking a cartoon on a bulletin board. But here’s what I recall most vividly. Before being apprehended for assholery Norman himself accosted me and rather than punching me out he asked the most basic and fair question anyone can ask his tormentor: “Why are you doing this?”

I couldn’t answer him. I slunk away. I had no language to describe the starved mice eating my nervous system or my shame at being blind or my terror when thinking about how I might live. I was dehumanizing a perfectly good person.

That was fifty years ago. I remain sorry to this day. And the terrible ugliness of online trolling; the name calling spurred on by the current putative president; the sorrows of people with disabilities who are still largely unemployed and unappreciated–these are never far from my thoughts. And no, I can’t expiate my miniature “Lord of the Flies” moment with a blog post. Nor can I tell you that nowadays I’m an exemplary man. But I do believe in emotional candor and ethics of care. I’m alarmed by all the big bodied twelve year olds I see in the public square. But I’m alarmed also by the knowledge that my insecurities can produce cruelty. It is altogether proper to know what the imagination is really for.

The Identity Pluck

My identity needs water. My identity is a dried turd. A 16th century one. Identity from “idem” to be the same. I’m the same as you. I’m not without my qualities but they’re significant only insofar as someone else also has them. My identity is troubled by this. It scratches and moans at all hours of the night. I’ve never met anyone like me. If I claim an identity aren’t I by the very act claiming a fantasy?

Well yes. Oscar Wilde said it: “Most people are other people. Their thoughts are someone else’s opinions, their lives a mimicry, their passions a quotation.” Given what Wilde endured in the name of originality who’d want to go beyond mere identity?

This is, in effect, what a free thinking human being should strive for: life beyond identity, not a sameness, a politburo, a glee club, a political party. This is scary. Institutions are against it. Churches, universities, corporations….Who dares to be naked?

Rousseau said: “I am not made like any of those I have seen. I venture to believe that I am not made like any of those who are in existence. If I am not better, at least I am different.”

Different frightens every school child. It scares the pants off of me. I want desperately to look like you.

Disability is interesting in this regard since no two people experience any disabling condition the same way. No. Two. People. In this way disability is not an identity. Disability is an enforcement.

Einstein wrote: “We experience ourselves our thoughts and feelings as something separate from the rest. A kind of optical delusion of consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us.”

Consciousness is predisposed to a sea sickness—staggering between separateness as ideation and the desire for sameness in the name of affection. Disability identity is enforced separateness (the social construction of normalcy) and a longing for others like us.

But no matter your disability there’s no one like you.

A disability by any other name would smell as sweet.

In this way I can’t be scripted by disablement. The name can’t help. The affections for likeness are fictive.

Audre Lorde, one of my favorite poets wrote: “I find I am constantly being encouraged to pluck out some one aspect of myself and present this as the meaningful whole, eclipsing or denying the other parts of self.”

Disability by Any Other Name

I’ve been disabled all my life and I hate the term. Beneath it, like Poe’s tell tale heart, is the pulse of loss. The “d” word is Karl Marx’s term: a 19th century mark for injured workers. It originally meant the lack of utility or earning power owing to a broken body. I prefer to be called a citizen.

That I’m a blind citizen should matter not at all. Did you know that blindness is nothing more than being born left handed? Disability is a false name which pulses underneath us and continues to cause human beings with diverse bodies terrible harm.

Of course there are cutesy efforts to fix the d word like putting the “dis” in parentheses to emphasize ability. This has always seemed to me like putting antlers on a cat. Diversions are seldom more than gestures and unless you’re using sign language gestures don’t mean much. Most if not all disabled will agree we’ve had enough of gestures.

The d word can’t describe me or the hundreds of d people I know. My band is made up of practical men, women, and children who have imaginations, wisdoms, loves, sorrows, tastes, and ambitions. For them the d is a horse collar—outdated, heavy. No one needs a horse collar anymore. Blind I’m disabled by the idea I’ve nothing to give. Disabled I’m doubly blind—not seeing becomes figurative worthlessness.

Citizen is better. I’d like my value to be understood as a matter of the hive. And yes, “value” is another tell tale heart. Value for whom? What does value mean? Why should the tax payer pay for a kid with Down syndrome to go to school?

Hitler called the disabled “useless eaters” to suggest the state shouldn’t support the unproductive. The presumption of competence, that the disabled have potential can’t co-exist in a purely industrial and essentialized vision of human bodies. It’s a terrifying vision. The d word is outworn, dangerous, and like the horse collar above, unsuited to a century when work itself is being reexamined.

I believe the future of work will involve more and more autonomous systems—robotics, driverless cars, supply chains that are fully automated. What will work mean for humans? It’s possible that deconstructing the d word will be important for everyone. Or it already is.