I’m alone…

I’m alone like a cabdriver who sleeps in his taxi dreaming of childhood. Red geraniums. Black currants. Sleep is a still life.

Last night I dreamt of my father, now long gone. He appeared beside a tall window at dusk, snow falling, and he was abosrbed, reading a book. I said, in the murmurous way of all sleepers, “that’s just as it was in life…”

Today the sun is strong. We’re allotted approximately 3 billion heartbeats in this life.

Disability and the Ableist’s Wall

With the recent passing of a close friend whose disability was central to his daily life, I seem to be leaning against walls. Let me clarify: they’re not visible walls. No, these are the walls of social containment. Let me further clarify: if you want to put someone “up against a wall” you must take for granted that the wall is either neutral or on your side. The obliging wall is a central truth when it comes to ableism.

You require medical care. You’re a wheelchair user. You’re shoved against the ableist’s obliging wall even though you’ve insurance. They push you against that wall and then you slip slowly out of your chair and onto the floor.

There are plenty of visible walls—the college auditorum with steps leading to the speaker’s platform. No disabled person would ever be a professor. There are conferences about disability where no effort is made to provide accommodations. My friend saw these things, endured them.

How they roll their eyes whe you point out their attitudinal walls. How they carry on about inconvenience and expense, as though designing things for human beings is a vast burden. (Making things accessible is often cheaper than making them inaccessible but the ableists are addi ted to their walls.)

Sometimes I think of ableism as being like an addiction to cigaettes. They know its bad for them but its such a daily ritual.

 

Finland, 1959

Water, sidelong, edge of sight,
Part of the magic, being blind,
Glimpses of the lake,
Fractions of grace.

There, between birches
The impossible blue
Of where we’re going.
Good God, what a childhood that was.

Lying in the grass midsummer…

Hi Pentti: the mushrooms are everywhere
Horses graze in the shadow of the barn
I’m drawing Coltrane’s wheel
On a fallen leaf
With my finger

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 Losing Two Friends in One Week

Two of my close friends died this week. Both changed my life for the better. (You may ask if there’s another kind of friend. If you’re relatively stable there isn’t.) Still I’m talking about true blue friends. One was a vibrant, outspoken, tough minded, wheelchair riding disability activist. The other was a vibrant, outspoken, tough minded literary agent. These two never met but they’d have liked each other. Both were New Yorkers with big hearts who were hard and sharp as nails. Respectively they knew how to get past locked doors whether figurative or literal.

As a matter of friendship neither of these souls expected me to solve their problems. This is rare in America nowadays when talking about one’s feelings has largely taken the place of adult discourse. Neither of these souls thought friendship was about the talking cure. If they wanted my advice they asked for it but never was the request framed as a matter of solving life long ills. Each talked fast and knew also how to stop and listen. Both hated bureaucrats, school principals, party hacks, self-aggrandizing academics, facile literary writers, and the New York Yankees.

I’ve been lucky to have had some good friendships. I say lucky because I’m not an easy person to know. I’m opinionated, contrarian, suspicious of cant, disposed to a generalized distrust of earnestness. I don’t believe in “theory” when applied to literature or culture. LIterary theory is just opinion that hasn’t been subjected to serious rhetorical analysis. Jacques Derrida on animals is not worth the read. Sara Ahmed’s work on happiness is nonsensical. You can critique anything. This doesn’t make the activity sound or valuable. As I say, I’m not easy to know. I suspect I’d have gotten along well with the late Neil Postman.

When I was 15 years old and staying at a Key Biscayne resort with my father (who was on a business trip) I found myself alone in an elevator with Melvin Laird, Nixon’s secretary of defense. The year was 1970. My hero was John Lennon. I looked at Mel and said, “How’s your war going Mr. Laird? Are the body counts where you’d like them?” I was anorexic, stringy haired, and rebarbative. He glared and said nothing and bolted when the doors opened.

I’m not easy to like. Unless you’re against war, social hypocrisy, and all the “isms” as we say.

But then again I like those who have learned to like themselves.

My “gone” pals knew who they were.

Which means knowing also who you are not.

Which means knowing what Bob Marley meant when he said:

“The truth is, everyone is going to hurt you. You just got to find the ones worth suffering for.”

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 

Farewell Bill Peace

First, because this isn’t an obituary, a short poem:

“Planks”

I begin. You also. And the dog.

The book on the table.

Multifaceted samovar.

Werner Heisenberg:

“Revere those things

beyond science which really matter

and about which

it is so difficult to speak.”

Poetry and science agree:

“There are things that are so serious

that you can only joke about them.”

It was the best of times…

You have permission to laugh.

Beginning. The absurd dancing.

**

Bill Peace, who passed away two days ago went by the online moniker “Bad Cripple” because he was rebarbative in the face of ableism. The bad cripple refused to be Tiny Tim. He wasn’t grateful because you held open the door for him. He wasn’t interested in answering your question “how he got that way” and he was certainly fed up with unscrupulous healthy body worship which he recognized as the implicit core of disability discrimination.

He was our friend. He was the contrarian’s contrarian with his PhD from Columbia University and a soldierly disdain for academics and inaccessible campuses.

He was our friend. He lived according to basic principles. He was a golden rule kind of man.

For all that he was a wheelchair using itinerant scholar who faced locked doors, broken ramps, busted elevators, cynical bureaucracies, and we’re just talking about university campuses. His nightmares with airlines, hospitals, public transportation, and merchants—these were legion.

He loved his son Tom. He could bake a good ham. He knew more about the history of tattoos and body art than anyone I ever met. Dogs adored him.

**

When you’re disabled you’ve no expectation of good medical care. Bill was treated horrifically by the emergency room doctors at Yale University when he had a heart attack while attending a conference on (what else?) bio-ethics. The ER staff put him in a darkened corner for twelve hours. No one helped him.

When he developed an open wound—a known condition for wheelchair users—he was repeatedly patronized by a “wound care” doctor in Denver. She never pushed for advanced and advantaged treatment for the man. I’m of the belief that this putative physician contributed to his death from sepsis. I’m not alone.

Those of us who pay attention to disability and health care also know that Bill Peace died at the same hospital where just a month ago Carrie Anne Lucas died. Two great disability activists dead in the same place.

Disability lives are always in peril.

**

One night in Katona, NY, a small, artsy, and very wealthy suburban New York town, Bill and I found ourselves navigating in a sudden snowfall. It was one of those mini-blizzards you get in winter. Because his wheelchair couldn’t get traction he asked me to push him. And so my guide dog Nira and I pushed him up a steep sidewalk while motorists, slowed by the snowfall rubbernecked. We laughed. “Look!” Bill said, imagining what BMW man was thinking, “there goes the blind leading the halt!” I said, “they’re just jealous. We’re authentic.”

Disability is authenticity. So is old age, childhood, animal faith, and hot soup.

**

Right now I’m typing alone in a Hilton Hotel in Liverpool, England. I came here for an excellent conference but how does one describe it—I’ve been walking around in a susurrus of tears. Yesterday I sat beside the Mersey River and wept among seagulls.

My stomach is in knots. I have cramps. And more to the point, as a blind solo traveling foreigner I feel quite alone.

And yet I also feel a principled, hot anger at how Bill was mistreated.

**

Dear cripples: do not ask “what’s the use?” That’s the ableist devil talking.

“There are things that are so serious

that you can only joke about them.”

Or is it the case that Satan is himself disabled, what with those cloven hooves that make it hard to ski? (Thank you Steven Lynch)

Did I mention Bill was a badass skier?

**

There’s a funny scene in “Don Quixote” in which Quixote knocks on the door of an inn that’s locked for the night:

“One evening, after a long day of exhausting rambling, the knight errant stopped at the door of an inn. “Who’s there?” shouted the publican, without turning the lock. In reply our hero presented his titles: “Duque de Béjar, Marques de Gibraleon, Conde de Bañalca-zar y Bañares, Visconde de la Puebla de Alcocer, Señor de las Villas de Capilla, Curiel y Burguillos.” The publican replied that to his regret he could not lodge so many people, and thereby deprived himself of a guest who might have procured him great profit.”

That’s the thing: the ableist believes there are many of us.

There’s just the one.

He needs to come in.

Bill, I say without sentiment, I hope you’re getting through the door.

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