Why the Able Bodied Don’t Like Disability in the Arts

I was in residence at an arts colony not long ago when I heard a noted American novelist tell a wide audience that they’d never be so blind and poor of judgment again—referring to (wait for it) a broader appreciation of marginalized art forms.

Blindness as metaphor, indeed all disability as metaphor is offensive and “not cool” anymore. That this occurred at a well heeled arts event doesn’t surprise me. It’s still the case that disability isn’t part of inclusivity in the arts even when some of the most amazing creative work in contemporary America comes from the disability community.

Just so the leading national academic conference for creative writing, the AWP (Association of Writers and Writing Programs) has a long standing problem with disability. They dislike having to provide accommodations at their conferences and they are particularly disdainful to disabled writers.

I’ve come to see this as a matter of resort sales. Years ago I ran training sessions for Sandals and Beaches resorts. The idea was to help beach front hotels become better service providers for the disabled.

One executive said that having disabled people on their property would negatively affect business.

I saw what he meant: all their promotional material featured photos of sleek, gym toned, happy looking people. Some were white, some were from different ethnicities. But the point was everyone was very very attractive.

When you look at the photos featured on the AWP’s website you’ll notice that all the writers look like they’ve just come from the gym.

When you look at the photos from arts colonies you’ll notice that everyone looks like they’ve just come from the very same gym.

That the arts industry (such as it is) has so little awareness (such as it might be) about it’s devotion to normality is telling. Diversity is OK if it’s about race, gender, sexual orientation, but it’s not applicable if you use a walker, a stick, talk with your hands, walk with a guide dog, etc. Everyone knows that disability art isn’t real art. It is something else, isn’t it?

Adrienne Rich, Virginia Woolf, William Carlos Williams, Audre Lorde, Stanley Elkin, Robert Lowell, Andre Dubus, Walt Whitman, Hart Crane—all were disabled. Some walked with canes, some stuttered, some used wheelchairs. None looked like they were fresh from the spa.

In the narrow confines of American art, which let’s admit is academic art, it’s still the case that when illness is thought of at all, it’s imagined as something to be overcome. The arts in America are driven by the medical model of embodiment.

Try explaining this to the arts administrators. They’ll say, as indeed someone at the AWP said to a room full of disabled writers, “your time hasn’t come yet.”

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 

On the Probable Death of Empathy

Empathy is an engrossing word. While it means the capacity to understand and share the feelings of others, its Greek origin suggests entering into the emotions of others. The Greeks thought empatheia was sacred. In dramatic terms its absence was viewed as a tragic flaw. With the advent of literacy (“book learnin’” as Huck Finn called it) empathy was reckoned as the ability to imagine what someone feels, a difference, as the Greeks didn’t fully believe in imagination in these terms instead viewing it as a divine prerogative only available to the best minds.

In the modern world (which for argument’s sake starts with Shakespeare) empathy as imagination has been a responsibility of sorts. Dickens, Dostoevsky, Whitman, George Eliot, Grace Paley, Eudora Welty—a long list—each of these writers shouldered a duty to bring forward the buzz and confusion in the minds of outsiders. Beginning with the Elizabethans literary writing is understood as an obligation to reach beyond the self.

With the altogether exciting rise of singular voices in literary publishing, those who speak from singularities—disability, blackness, Native American experience, LGBTQ lives, Asian-American experiences, regionalisms of all kinds—literary empathy is often recast as “cultural appropriation.” It is asserted that no one “not of your neighborhood” should ever ever imagine your life for you. There’ve been many brouhahas recently about writers who are believed to be transgressors, who willfully seized the interiority of human beings not of their own neighborhoods.

As one who hails from a historically marginalized position I believe this febrile, literary neighborhood watch is both understandable and fatal.

I’m a blind poet and I loathe Anthony Doerr’s Pulitzer Prize winning novel All the Light We Cannot See. Doerr presents a blind teenager, a girl, as helpless to the point of needing to be bathed by her father. Since Doerr makes her blindness vaguely interesting, allowing some flashes from her point of view many non-disabled readers flipped for the book.

From a disability POV Doerr extends damaging stereotypes—her inability to bathe, her half- prophetic intelligence—are junk. Many in the disability community have cited the book for “cultural appropriation” a position I fully grasp. Doerr uses blindness as a literary device to advance his plot, Within the field of Disability Studies this is called “narrative prosthesis.”

Does the novel really do damage to the blind? Who knows. The blind are 70% unemployed in the United States. We’re imagined as quasi-helpless, burdensome. Doerr plays into this. He does present her as having an inner life. Big whoop! I’m citing him for a failure of empathy. He cannot steal my culture.

This is the crux of the matter: talented writers can enter effectively into the lives of others, even people who aren’t situated precisely next door. For my money one of the most effective portrayals of disability in all of literature was written by Toni Morrison. In her novel Sula she puts readers inside the head of Shadrack, a World War I veteran suffers from PTSD and has been released prematurely from a veterans hospital. He can’t order his mind or control his hands. He’s seen brains flying in the air. She writes at first of his experience in the ward:

“When Shadrack opened his eyes he was propped up in a small bed. Before him on a tray was a large tin plate divided into three triangles. In one triangle was rice, in another meat, and in the third stewed tomatoes. A small round depression held a cup of whitish liquid. Shadrack stared at the soft colors that filled these triangles: the lumpy whiteness of rice, the quivering blood tomatoes, the grayish-brown meat. All their repugnance was contained in the neat balance of the triangles—a balance that soothed him, transferred some of its equilibrium to him. Thus reassured that the white, the red and the brown would stay where they were—would not explode or burst forth from their restricted zones—he suddenly felt hungry and looked around for his hands. His glance was cautious at first, for he had to be very careful—anything could be anywhere. Then he noticed two lumps beneath the beige blanket on either side of his hips. With extreme care he lifted one arm and was relieved to find his hand attached to his wrist. He tried the other and found it also. Slowly he directed one hand toward the cup and, just as he was about to spread his fingers, they began to grow in higgledy-piggledy fashion like Jack’s beanstalk all over the tray and the bed. With a shriek he closed his eyes and thrust his huge growing hands under the covers. Once out of sight they seemed to shrink back to their normal size. But the yell had brought a male nurse.

“Private? We’re not going to have any trouble today, are we? Are we, Private?””

Later, out in the world, alone, without assistance, we see him on a country road:

“Once on the road, he headed west. The long stay in the hospital had left him weak—too weak to walk steadily on the gravel shoulders of the road. He shuffled, grew dizzy, stopped for breath, started again, stumbling and sweating but refusing to wipe his temples, still afraid to look at his hands. Passengers in dark, square cars shuttered their eyes at what they took to be a drunken man.

The sun was already directly over his head when he came to a town. A few blocks of shaded streets and he was already at its heart—a pretty, quietly regulated downtown.

Exhausted, his feet clotted with pain, he sat down at the curbside to take off his shoes. He closed his eyes to avoid seeing his hands and fumbled with the laces of the heavy high-topped shoes. The nurse had tied them into a double knot, the way one does for children, and Shadrack, long unaccustomed to the manipulation of intricate things, could not get them loose. Uncoordinated, his fingernails tore away at the knots. He fought a rising hysteria that was not merely anxiety to free his aching feet; his very life depended on the release of the knots. Suddenly without raising his eyelids, he began to cry. Twenty-two years old, weak, hot, frightened, not daring to acknowledge the fact that he didn’t even know who or what he was…with no past, no language, no tribe, no source, no address book, no comb, no pencil, no clock, no pocket handkerchief, no rug, no bed, no can opener, no faded postcard, no soap, no key, no tobacco pouch, no soiled underwear and nothing nothing nothing to do…he was sure of one thing only: the unchecked monstrosity of his hands. He cried soundlessly at the curbside of a small Midwestern town wondering where the window was, and the river, and the soft voices just outside the door…

Through his tears he saw the fingers joining the laces, tentatively at first, then rapidly. The four fingers of each hand fused into the fabric, knotted themselves and zigzagged in and out of the tiny eyeholes.

By the time the police drove up, Shadrack was suffering from a blinding headache, which was not abated by the comfort he felt when the policemen pulled his hands away from what he thought was a permanent entanglement with his shoelaces. They took him to jail, booked him for vagrancy and intoxication, and locked him in a cell. Lying on a cot, Shadrack could only stare helplessly at the wall, so paralyzing was the pain in his head. He lay in this agony for a long while and then realized he was staring at the painted-over letters of a command to fuck himself. He studied the phrase as the pain in his head subsided.”

Morrison’s portrayal of Shadrack is pure empathy and is a demonstration of literary writing at its finest. I won’t quibble about a non-disabled writer entering into the thoughts and torments of a wounded veteran. I can’t. The disabled need all the allies they can get. When a novelist as talented as Morrison turns her attention to a man with shell shock, who has no language for his experience, who cannot control his hands, then she is employing art in the service of a greater appreciation of tragedy and difference for every reader. This is empathy at its best. Its stunning.

I don’t believe in cultural appropriation. I think non disabled writers can write brilliantly about disability experience. They need to do their homework—talk to real blind people, true cripples, what have you.

The term cultural appropriation must never detract writers from the brilliant art of literary empathy.

I don’t want to live in the age when empathy died.

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 

Like a Falling Leaf….

Like a falling leaf
The boy in me, spinning
How to take him with me
As my years advance?

Finnish poet Paavo Haavikko:
I hear a happy tale, it makes me sad:
no-one will remember me for long.

The boy, a blind young man
Knew a thing or two.

He was never “in” time
Like those trees you see
In certain forests
Still green
Though there’s more darkness
And we are long into September.

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 

Washing Birds is the Work of the Gods….

Washing birds is the work of the gods
They’ve been at it some thirty thousand years
One may reasonably believe
Birds were not clean
Before rain gods came
I stand before a plate glass window
Drinking coffee from a paper cup
Many of my friends are dead and gone
Leaves whirl under a streetlamp
Death’s butterflies
I’ve a hymn in mind
Called I Must be Home by Now…

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 

Her hands in the stream…

You can tell me about Helen Keller
But you can’t say what words
Perform on the inside.

Have you seen a cormorant
Drop from on high
And enter the sea?

That’s my Helen Keller—
That falling…

ie Kuusisto :
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 

Faeries, come…

All those who believe I’m vagrant—blind as I am
Walking with my stick or dog—
That woman in Boston who hoped to pray for me
Who ran away when I offered to pray for her,
What’s wrong with a disabled prayer?
I stood in the street and waved my arms.
In London a girl called me “poor Dearie”
And thrust coins in my hands.
Once in Cleveland a red faced man
Followed me block after block
Proposing to help…better I thought
Than the alternatives—
The asylum; the work houses.
In general the poets of my nation
See the blind as an existential blank.
But tired of standing for nothing
I sing and walk down Broadway
The sweet, manifold, wishful syllables
Of William Yeats—
Faeries, come take me out of this dull world,
For I would ride with you upon the wind,
Run on the top of the dishevelled tide,
And dance upon the mountains like a flame.

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 

Blind, I bought a horse…

Blind, I bought a horse
Not to ride, though some would,
My wife for instance—
No I bought him because
Of his loneliness.
Orphic horse retired
From the track
Left standing in a stall.
Have I mentioned his neck?
It’s as long as Noah’s hope
For a new sun—
Il miglior fabbro
I whispered,
To the greater maker…

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