How many burdens do you carry daily? If I ask myself this question I admit I don’t know the answer for myself. It’s like asking “what should I be doing?” It’s a fool’s game.
Here’s the problem: I carry some baggage because I’m disabled. “No big deal,” says the heart (which I’m told sits reliably in the center of the chest and not to the right hand side as depicted in cartoons.)
The heart is optimistic. It knows it must be. Every pulse beat is optimism.
Now the brain is different. It’s read Duns Scotus and Neruda and Kafka and Hannah Arendt and Frederic Jameson and “Maggie: A Girl of the Streets” and at least a thousand books on disability and who knows how much gloomy nonfiction—so the brain is disposed to contrarian thinking whenever joy comes up.
Alas my brain is more than a little bit like my Finnish grandmother.
Her name was Siiri and unlike her Apple namesake she was gloomy. She couldn’t help it. She was very Lutheran and her husband was a minister during the Great Depression and they’d come to the U.S. to escape hunger and why wouldn’t you become cautionary and somber in the face of a world of gravity and scarcity?
I don’t know about you but I’ll take gloom over despair. I know about this. I have depression as well as vision loss. I ride two horses, one black and the other white. Or something like that. Maybe I’m a shark with two brains: one of appetite and the other of more appetite.
I don’t know as much about the mysteries of consciousness as I pretend.
But I know this: the burdens I carry are the burdens of others.
If the subject is disability, well, I speak up for disabled students and staff who struggle to acquire basic accommodations both in my own workplace and around the world.
Burden number one: this can make me unpopular. As with racism or misogyny or homophobia the advocate can be characterized as a malcontent almost instantly.
I’ve never completely gotten used to this. The “this” being disapprobation for speaking out against ableism.
I read as much as I can by scholars and poets of color; gay and trans writers; black writers; women writers. And yes, men. I’ve yet to find anyone who’s more deep tissue wise than Walt Whitman.
Last week I participated in a live online town hall discussion about service animals. In the Q &A period several apparently non-disabled questioners asked things phrased thusly:
“Do we have to?”
As in “OK, service animals are legally allowed to enter my space, but can’t we tell those darned blind people where they are to make their dogs relieve themselves?” Or: “OK, a child with a service dog comes to public school—do we have to help that child?” (As if being disabled requires extraordinary extra help; as if a disabled child is a burden.)
I became upset.
I said the following:
“I went to public school before the ADA. I have been told by teachers and school administrators that I’m inconvenient; or worse—that I don’t belong.”
“Frankly, I hope there’s a room in Hell for school administrators where they’ll get to sit throughout eternity with Joseph Stalin, Richard Nixon, and the man who invented the roach motel.”
Then I signed off.
I’ll never not be offended by ableism.
I’ll never sanction the winks.
Just try those questions out if you substitute race or gender or sexual orientation for disability.
How many burdens do any of us carry?
They’re much lighter when we hold them up to scrutiny.
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.
(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