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.
ABOUT: 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
(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