Author: stevekuusisto

When I was in my early twenties I had the opportunity to travel some, and I did. Travel is broadening of course, but its also difficult if you have a disability. In my case I was both seriously impaired visually and unable to discuss the matter. Picture walking in strange cities hunched over, feigning sight, playing with shadows. That was my shtick.

The problem with a shtick is what it does to you on the inside. You know you’re dishonest. And walking along a big thoroughfare like Kurferstendam in Berlin you feel your dishonesty step by step. Why Berlin? I remember walking with five or six young scholars, all Fulbrighters like myself. They were admiring the sights. I was pretending to admire the sights.

On the inside I was scarcely able to trust myself. In Berlin I thought of Goethe’s axiom:  “Trust yourself, then you will know how to live.”

If you don’t know how to walk safely you’re not living. In my twenties I lived a pantomime of freedom. I’ve written a great deal about this. What I haven’t said, at least not precisely, is that hiding a disability is another disability—the first is physical, the second is self-administered through an abeyance to culture. The culture doesn’t like your abnormality and you ingest that dislike, much like those cattle in France who eat poisonous flowers in the autumn. And you get used to eating the damned flowers. Goethe again: “Few people have the imagination for reality.”

Giving up the flowers is the imagination. Do not, I repeat, do not eat the culture’s flowers.

Of course being “out” with a disability doesn’t save you. Oprah, etc. Being “out” means you’ve traded the shtick of passing, of invisibility, for adventitious and hourly discourses with opposition.

Yum yum! You’re not eating flowers. You’re in a Starbucks in the Newark airport eating a blueberry muffin and your guide dog eyes you and twelve other people, strangers all, are eyeing you because you’re significantly different and roving eyeballs enjoy novelty and you’re the novelty de jour. So even eating your muffin you’re a discourse of difference and sometimes the whole thing is silent—you hear the muffin going down your throat—and sometimes the thing becomes vocal as one of the strangers can’t resist and opens a conversation this way:

Stranger (business man type, with London Fog overcoat): “I knew a blind person once…”

(There’s nuance to this—he knew a blind guy in college, or a blind person who lived down the street.)

Sometimes the stranger asks me if I actually knew the aforementioned blind person because after all, shouldn’t all blind people know each other?

You’re chewing your muffin and thinking “what if I asked him if he knows all the other men wearing London Fog raincoats?”

Stranger man sees your blindness. His language is cultural. He sees your difference. He may be sincerely interested. But by definition he isn’t talking to you with full intelligence. And you think about the reasons why this should be so: his bad schooling, his parochial experiences with physical difference; years of bad movies and TV; a vaguely decent neo-Victorian sentimentality pulsing through his veins. But no matter, you’re now a figure of difference and now you must decide how to avoid the self-administered abeyance to culture that once upon a time marked your efforts to “pass” as a sighted person and which now, threaten you with the “flip side”—your role when “out” is to make physical abnormality seem like a snap. My muffin tastes like dark flowers. I take a sip of house blend. I chew.

Do you see how mediocre this is?

Now you’re in a fix. The stranger’s invitation to talk is also an invitation to participate in conversational pornography—“inspiration porn” whereby you, the disabled one, say moderately inspirational things. Or majorly inspirational things. Or the stranger says inspirational things, like, “I knew a blind guy once who could take apart a radio and put it back together.”

Dang.

I knew a blind guy who climbed a mountain. I knew a blind guy who went sky diving. Who caught more fish than the rest of us combined…

And you want to say—I knew a short guy once. I knew a short guy who could reach the peanut butter on the top shelf with a special device called a step-ladder. He was amazing. Really inspirational. 

But you don’t because its easier to get out of the intrusive moment by being as mono-syllabic as possible. Or you use the dog as a ploy. I’ve got to go. The dog needs to go out.

And you walk around the bloody monolith of the airport feeling the trap of performativity. Your script is handed to you and you can tear it up if you wish. You could screw with the guy’s head and say:

Yeah all blind people know each other. We have psychic powers as the Greeks well knew.

You could eat the flower arrangements on the table.

You could tell him you’re a misanthrope and urge him to go away.

But the best of you is empathetic.

What you say has become more refined over the years.

I don’t talk about blindness. There are agencies for that. Lets talk about neutrinos. 

Disability taken as a concept is a perfect Boolean figure. If X = the abnormal body, and Y = the normative body, then one may consider the negation of embodied logic this way:

In other words, all embodiment is disjunction.

**

When I was a boy I watched a neighbor’s cat patiently eat a fish down to the bone. The cat allowed me, a legally blind usurper, to lie next to her as she took care of the material implications of endurance. Even before I knew the proper term, I understood algebra.

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Now I have to climb into a near star. There isn’t much choice anyway. All embodiment is disjunction. Stars and bones are operands.

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Leap: I love those lines by Dorothy Allison, from her memoir One or Two Things I Know for Sure:

“My sisters’ faces were thin and sharp, with high cheekbones and restless eyes, like my mama’s face, my aunt Dot’s, my own.  Peasants, that’s what we are and always have been.  Call us lower orders, the great unwashed, the working class, the poor, proletariat, trash, lowlife and scum.”   

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The associativity of “scum” is what’s called a “monotone” law in Boolean Algebra. Just thought this worth sharing…

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We are old friends, the crippled body and I.

I’m counting all the distributive names of identity while sailing to my star.

We forget the disabled every minute. President Obama forgets them while addressing the troops in Afghanistan. He promises a great and noble health care system for veterans, but he knows we’ve never managed to build a sustained and sustaining health care system for soldiers. He knows. Still he sticks to what he’s supposed to say. And the troops applaud because they must. Meantime troops with disabilities are struggling all over the US. The obstacles they face are profound. My concern as a disability rights advocate rests with the fact that when we forget the plight of real wounded warriors—forget that rehabilitation and reasonable accommodations and education are necessary and should be understood as “rights”—then, in the heart of forgetting, we admit cynicism and demagoguery into the public square. This is happening today, at this very hour. We have underfunded the VA for years. Now in the wake of the VA’s “waitlist scandal” we hear a chorus of cynical voices calling for the dismantling of the VA.  Tom Philpott writes about the Koch Brothers front group “Concerned Veterans for America over at Stars & Stripes:

In the thick of this is Concerned Veterans for America, posing as a vet advocacy group and being rewarded for it.  CVA press releases usually are partisan attacks.  Its spokesman, Pete Hegseth, an Iraq war vet and Republican who ran for a U.S. Senate in 2012, is quoted often by major news outlets without mention of press reports associating CVA with the Koch brothers, libertarian billionaires who create public interest groups to oppose big government.  That’s fine.  That’s protected speech.  A CVA spokesman told me last year it won’t reveal donor information.  

What should upset vets is the use of select facts about VA and its programs to reinforce fears rather than give reliable information.  Last week a CVA press release hit a new low in purporting to document “lies” Shinseki told in congressional testimony, dropping any veil of respect for a decorated, combat-disabled soldier with a long and stellar career.

It is no coincidence only Republicans, including Rep. Jeff Miller (Fla.) and Sen. Richard Burr (N.C.), participate in CVA events.  They should reconsider.  Though CVA sponsors an occasional informative forum in Washington D.C., it produces no careful analyses of what ails VA.  The goal seems to be to attack, relentlessly, while a Democrat holds the White House.

Traditional vet groups are alarmed by the rising profile CVA has on cable news programs and in newspapers where informed opinions on chronic claim backlogs and care delays should rule.  Instead, there’s heated rhetoric that stirs dissent and attempts to turns the public against a department the CVA routinely portrays always as too costly and too ineffective.

**

The United States has been underfunding health care, mental health services, community health programs, disability rehabilitation services, and veterans health services for the better part of the past 40 years.

This is a fact. And now the Koch Brothers see their chance to take apart what is already underfunded.

Everyone should be alarmed.

When the police came to the big house on Pleasant Street they brought pillows. The squad cars were filled with feather pillows. It looked like they’d raided an orphanage. It was my first experience of quotidian surrealism—cops with pillows and wooden boxes and their faces tight with concern; small town officers preparing to face death, for the house before them was really stuffed to the gills with dynamite and it was crotchety dynamite, old, rascally vicious TNT and the truth was, it could blow at any minute and everyone could die. Somehow what with familiarity—because she’d lived with the dynamite for such a long time—my grandmother thought the sight of cops with pillows was ridiculous—though she didn’t say so. She told us later, that seeing cops gently laying stick after stick of dynamite in pillowed boxes was laughable, and better yet, their tippy toed, hunched parade up the basement stairs, each man holding his breath, was risibly tight, so much so she’d had to run away and pee.

It took the cops eight hours to remove the TNT.

“Somehow I never thought the stuff would explode,” my grandmother said. “But the cops’ fear,” she said, “that was priceless.”

When I was a boy I thought my grandmother’s nitro-glycerine tablets were amusing. Certainly at any moment my grandmother might explode. The fantasy (for that’s what it was) had more possibilities than those offered by mere prescription for she lived in a Victorian house filled with dynamite, a matter at once improbable and wickedly dangerous. About twice a year she’d go to the Laconia, New Hampshire Police Department and remind the good officers she had roughly 200 crates of TNT in her cellar, and twice a year the policemen patronized her with “yes, yes,” and “dear, dear” and “there, there” and that would be the end of it. But then the day came when she brought a box of decaying dynamite sticks into the station and plunked it down on the desk and said, “W.T. loved dynamite, and he left me a house crammed with the stuff, and he’s been gone a long time, Christ, for all I know he’s in Dynamiter’s Heaven. But dynamite decays Godammit, and the whole house is going to blow the next time somebody rings the doorbell!”

It was the doorbell that got their attention.

And so we sat around for a week, my grandmother popping nitro pills and smoking Kent cigarettes, the house creaking as it always did, the boxes of dynamite still as taxidermic bison, and the police nowhere in sight.

I’ve just returned home from the University of Iowa (where I used to teach) and where I saw my stepdaughter Tara Connell graduate with her master’s from their “Speech Pathology” program. Tara’s intention is to work with autist kids and I couldn’t be prouder of her. She’s worked tirelessly to achieve a goal—a noble pursuit—for she wants to make the lives of others better. I’m not certain this moral commitment can be taught though certainly much else can. And so, sitting in the vast basketball arena at Iowa I reflected on how Tara has grown; how she’s gracefully absorbed the examples of the many adults in her life who’ve devoted their careers to helping people with disabilities. (Her mom was for many years a guide dog trainer, as was her father.) 

Tara’s accomplishment can’t be diminished by architectures and deleterious administrations. But if you were a person with a disability at Iowa’s commencement and you desired a seat, perhaps with your family, you were out of luck. One of the reasons I left the U of Iowa was the institutions general and ubiquitous unconcern for people with disabilities. The disability seating in the “Carver Hawkeye Arena” is pre-ADA seating, at the top of the stadium; so far from the action you might as well stay home. 

While I was in Iowa I checked Facebook and saw my friend Bill Peace was attending his son’s graduation from Hofstra. Bill is a wheelchair user—nay, an athlete on wheels, but nevertheless, his seating for Hofstra’s commencement was every bit as disgraceful as Iowa’s arrangement. 

Now this isn’t a scientific sampling. Two parents with disabilities, two campuses, but ask yourself about academic culture and disability. Iowa’s student services office for disabilities is located in the basement of a dormitory where people with wheelchairs can’t in fact “get out” if there’s a power failure. The architectural and administrative message couldn’t be clearer: disability is a ghetto; its marginalized; its not important for the able bodied general administrative population to think about. Iowa’s commencement platform was up high, with two sets of stairs. No effort was made to make the event accessible should there have been a wheelchair user in the ceremony. (Of course they’d have “come down” from the platform and handed a diploma to the wheelchair student, if they’d been asked.) Meanwhile, the graduate dean at Iowa spoke moistly about how important veterans are to the university. One wonders what kind of veterans he imagines. 

Disability is part of everything, not a sub-rosa category of citizenship. But you wouldn’t know it if you’d visited Iowa or Hofstra this past weekend. Shame on these two schools. 

Back to Tara. Despite the abeyance and distillations of disability evident, sometimes even in her own curriculum, she believes autists’ lives can be marvelous. She sees promise. She presumes competence. Nothing could be finer. And nothing is more important as a cultural motto. Like the golden rule it works for everyone. 

Hello. I am a guide dog. My name is Nira. I read Walt Whitman in secret. I especially love these lines: 

Why, who makes much of a miracle?

As to me I know nothing else but miracles,

Whether I walk the streets of Manhattan,

Or dart my sight over the roofs of houses toward the sky,

Or wade with naked feet along the beach just in the edge of the water,

Or stand under trees in the woods…

All dogs read Walt Whitman. We agree with the “good gray poet” that:

Every cubic inch of space is a miracle, 

Every square yard of the surface of the earth is spread with the same…

I’m a guide dog. I cherish lives. I even save a few. 

Dear Dorothy Parker, you are such a pest. Flamingos often are. Especially the solo ones. 

Dear Pierre Reverdy, don’t you have any real friends?

That was a mercurial zeitgeist alright. It made people hot or tender. 

**

Some say we can’t have the world and justice at the same time. I don’t agree. People who think so have never saved a dog or a child. 

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Beware of people who have never saved a dog or a child. 

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“Eat the round ones first,” (my grandfather’s last words.)

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“Of course I talk to myself. I like a good speaker, and I appreciate an intelligent audience.” (Dorothy Parker)

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“[poems are] crystals deposited after the effervescent contact of the spirit with reality.” (Pierre Reverdy)

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Opportunity is an intriguing word because it rises above fact to become an invitation.

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Dorothy Parker said she’d be happy with a diamond studded wheelchair. Now that’s capitalism. 

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Pierre Reverdy: “God exists only if adored.”