Author: stevekuusisto

Retirement

—For Doug and Sari

In the bad old days it was bad in another way:

Children climbed ladders in the dark

At a priest’s word, or sat 

When they were told, maybe one book 

went around 

Bunyon—What God says is best,

is best, though all the men in the world 

are against it.”  In the bad old days

no one breathed without permission.

A girl who couldn’t speak

and a boy gone blind

read nothing—their lives blanched

by the hands of clocks—

Who’d take the time?

Only the brave, averse 

to the middle,

a mean average 

would dare to teach.

One sees 

how bold that was—

calling for tomorrow 

when there were defeats 

to remember.

Stirring this very night

freed from final ends 

we once called school

are all the little “yeses”. 

“No world wears as well as it should,” said Auden, who was thinking of art and culture. But daily life doesn’t hold up either—especially if you have a disability. The things you hear from strangers are hackneyed and tedious—“Why don’t you look where you’re going if you’re blind?” or “How does the dog know when its time for you to go to the bathroom?” The frontiers of personhood are assaulted daily. On the 4 train in New York a woman once asked me if I knew she was a goddess. “Yes,” I said, “you’re Hera.” “That’s right,” she said. “How did you know?” “My dog told me,” I said. This satisfied her. 

If you have a disability you know a lot about abjection. You also know irony. You say things like: “Well if Jesus could cure a blind man, why didn’t he just get rid of blindness?” “What’s a self-respecting man-god good for after all?”

Contrarian irony was unlocked in me quite early. I’m inordinately suspicious of cant. (For my blind readers that’s “cant” with a c and not with a k–though I have my suspicions about him as well.) 

My friend Bill Peace is fond of the phrase: “I’m not impressed.” Bill is an anthropologist so he knows when you’re less adept at pottery than your neighbors. For example: my immediate neighbor (who I’ll call Erasmus) can’t spin a pot to save his life–whereas my thrice removed neighbor can turn out a pot that would make Josiah Wedgwood weep.

The thing about being or not being impressed is the choice we make about saying so. Especially when we’re outsiders. You can bet Margaret Mead didn’t tell the Arapesh their pots were laughable. 

But what do we do when the pots are laughable? When we have disabilities and the constructed world is mediocre? How you say it–how you “tell it” is a complicated business.  

Look: they’ve plowed snow into the disability parking space. Look: they’re hosting a conference without disability accommodations. Look: there are not alternative methods for reading the handouts in a meeting. No sign language interpreters. 

The pots are laughable. 

Some days it seems to me that while disability culture has been progressing by leaps and bounds, the mainstream has been under a spell—delusional iron age magic—and so we have neighborhoods of potters and whatever might be the opposite of potters, shatterers I guess. 

I live in this reality. Its not disposable, like the disappointment following a loss by my favorite baseball team. The shatterers are all around the disabled.  

**

Shatterer number one, former boxer Evander Holyfield:

“Boxer Evander Holyfield, who is currently on the U.K.’s Celebrity Big Brother, is in hot water for remarks he made on the program comparing homosexuality to a disability, saying both can be treated by a doctor. All together now: Ughhh.

Holyfield made the remarks on Sunday when reality star Luisa Zissman asked him if there were any gay boxers, according to TMZ. He responded that homosexuality is something doctors can fix.”That ain’t normal!” he says. “The Bible lets you know what’s wrong and what’s right.” He continued his “handicap” analogy: “If you were born, and your leg was turned this way, what do you do? Go to the doctor and get it fixed…The only thing I’m trying to tell you is you know how handicapped people, you can’t say because they’re born that way you can’t move that…Yes, it is a choice.””

Full story here. 

Shatterer number two, the story of Joe Schultz:

“An Army veteran in Waco is trying to figure out who scammed him out of tens of thousands of dollars in back-paid disability benefits.

Now his fellow veterans are doing what they can to make sure he’s not left out in the cold.

“I’m disappointed and hurt,” says 66-year old disabled veteran Joe Schultz.”

Full story here.

And number three, the story of Marie-Patricia Hoarau, a wheelchair user who was booted off an airline flight. Read here. 

Shatterers all…

Dr. Gerhart Stalling invented the guide dog. His name has been lost. We remember Diderot who first said blind people could be educated. We remember Helen Keller with her vaudeville shows. 

Who invented the clepsydra, the water clock? What was the name of the Venetian who invented the hourglass? 

Dr. Stalling. I love you. I don’t care if Aphrodite’s garden is closed for repairs. 

**

I know an essayist who doesn’t believe in the truth. He teaches at a famous university. I hope he’s passionate enough when the inevitable punishment begins. He’s young now. But he’ll be old quite soon. In age you have to stand on the ladder of your own constructions. Me? I want a firm ladder.  

**

Error does not end with youth. That’s a problem alright. 

**

I want some Chinese firecrackers in mid winter. 

**

If you keep a notebook, don’t show it to your muse. 

**

I think the Venetian who invented the hour glass was named Popo. Popo Abeverrare. He was an annoying neighbor. No one likes people addicted to the laws of probability. 

I think about the beauty of bruises. The bruise of boyhood; the bruises left by slamming doors. The opportunity for a good bruising is never far off when you have a disability, or, more specifically the likelihood of same is increased—medicine pathologizes, colleagues in the workplace impose their unexamined neo-liberal assumptions and a smart bruising is guaranteed. The beauty isn’t moral—I don’t subscribe—“what doesn’t kill you” is just that; “you’re still alive” but not necessarily stronger. But if Ernest Hemingway was right and we are strong at the broken places then we are beautiful bumped and blue. 

Don’t let anyone make an example of your bruises. Protect them. Let them speak for themselves.

“Let me state up front, Doctor Normal is a fine man. On first meeting Doctor Normal, who seemed amiable enough, if intense, we decided we liked him. Doctor Normal was thorough. Doctor Normal took his time. Doctor Normal followed through with requests. Doctor Normal made us feel like, in the realm of his doctoring specialty, he knew what he was talking about.

But then one day Doctor Normal used the word “normal.” Something like, Well, in a normal situation…”

— Heather Kim Lanier “Breaking Up With Doctor Normal”

When my friend Heather takes her daughter Fiona to the doctor he only understands her developmental disabilities by setting them against a normal child’s life. Imagine! The poor doctor is bewitched! He thinks there are normal children! 

The bewitched doc obviously doesn’t get out much.

We might suggest he read some passages from Walt Whitman’s Leaves of Grass. Democracy isn’t tidy and normalcy is hard to locate outside the dark warren of human thought. “Its difference we celebrate doctor!” (“Still it would be marvelous to terrify a law clerk with a cut lily,” —Pablo Neruda) Doc Norm is scared of Fiona—she’s a cut lily in a law office. 

In the doctor’s imagination birth and death are equidistant from “normal”. 

In the doctor’s imagination the unchangeable losses of childhood are “normal” but never the changeable losses—the latter are too much work to contemplate.  How disabled children may prosper is the subject of life itself. “Normal” allows him to forget the largest share of existence. Poor doc! Cut lilies and dreams of talking oak trees surely must frighten him out of his wits. 

Its not enough to say Doc Normal is a symptom. (Though he is.) Not enough to say he represents neo-Victorian medicine. (Though of course he does.) Doc is a member of the mildewed mob of badly educated physicians and health care workers who cannot imagine patients as being other than their symptoms. 

One sees this with ophthalmologists. Ask a group of blind people what their experience with eye doctors was like and they will invariably tell you that the doc said: “I’m sorry. There’s nothing more I can do for you.”

There’s no life after blindness. No opportunity. No spirit. No joy. No family. No diamond. No hat. No honey. No green grass. You see, they didn’t discuss this at medical school. 

I once gave a lecture to a gaggle of baby eye doctors at Johns Hopkins University. While I was talking about the social construction of disability and why you have to see the whole patient, they were reading their mail, checking their palm pilots—this was just before the introduction of the iPhone. They figured I had a guide dog and wouldn’t know. My appearance was just some tedious exercise in political correctness. 

O the primal yawn that brings forth the writs of this world. 

O Doc Normal, with your sensitive Narcissus face. 

There’s a piece in today’s New York Times on blindness that’s been bugging me—maybe I don’t have the vernacular right—its lodged in my gestalt where a life of research is troubled—maybe that’s better. 

The OpEd by Rosemary Mahoney and entitled Why Do We Fear the Blind? is both well meaning and terribly weak, and though its not meretricious, it works on the margins of analysis. Mahoney’s premise is that “the sighted” don’t understand “the blind” and moreover sighted people fear blindness. Accordingly her thesis is insufficient to the topic—which is something much larger than the mise en scene of scary blind people walking down streets and frightening sighted pedestrians as blindness can’t be separated from larger issues, (what’s called in disability studies “normativity” or the social construction of normalcy). All physical differences trouble the public nerve, a fact that matters because in Mahoney’s article blindness stands alone and is reified or metaphorically forced to represent a thousand discomforts. Because Mahoney doesn’t understand this she makes a secondary mistake, imagining there “is” something especially significant about “the blind” that she needs to explain because, after all, she works at a school for the blind. 

I’ve traveled to 47 states and 7 foreign countries with my three guide dogs. In general terms I don’t encounter people who say, “How do you think, how do you understand life?” I know dozens of blind men and women who can share stories of full inclusion—I can’t resist—of unblinking acceptance. I’ve had cab drivers from Egypt and Somalia talk excitedly about their own blind family members who are in school; I’ve had civic leaders and business people talk about blindness as a workplace advantage. Mahoney’s essay will, I fear, leave the uninitiated reader of the Times convinced that blind people are in need of rescue.

Far better to say that all people with disabilities both in the United States and abroad suffer from misconceptions that can set them back. Better to say that because blindness is a low incidence disability its possible to know very little about the subject. Better to tell stories of students and blind friends who have opened doors of success. You would think, looking at the Times layout (which features a vaguely sinister blind man with sunglasses apparently balanced in cosmic rays of indeterminacy) that the “blind” are shrill with nature’s unfair cry. 

I was disappointed. Or as my friend Bill Peace would say, “I wasn’t impressed.”

How does it begin, the collapse of wish?

When you can’t ask how it ends. 

This is a joke of the rich. 

They play chess with civic statues. 

Last night’s snow provides the birds a stage.

Ezra Pound would insert Greek.

ὄνους σύρματʹ ἂν ἑλέσθαι μᾶλλον ἢ χρυσόν

(Asses would rather have straw than gold.)

Three crows on my snowy lawn, 

their choreography, all dance sideways

pecking at the remains 

of a Christmas wreath…

When I was a lad, well, you know—

I lived in the warrens of an outlawed sect called “the blind”.

Say what you like “the cave’s” hagiographies make a thin volume. In our time few poets sacrifice tourism for this antre—just look at their “Facebook” postings—trips to Europe, or the Exotic Outer Limits, and always they’re eating brioche.

Here’s to the cave of making

where the lonely write their poems,

where kings and queens have foundered

and no one has a phone.

I went there as a child, 

a blind little kid

and drew pictures in a scrap book  

just as Jesus did. 

The walls of the cave are narrow

they’re neither light nor dark,

 you may write whatever you wish

with a tiny dot of chalk.

The cave has nothing festive

no promises or lovers;

On its floor are the seeds of memory

and match book covers.

A dog may come sometimes

they’re always themselves—

unworried about the stigma

of pages, books, and shelves. 

No one else will visit

so plant an abiding staff

where the light is inconsistent

and your heart is sharp as a gaff.