Category: Disability Perspectives

One of the German philosophers (though I don’t remember which one) wrote that the world"worlds". Taken broadly this means that our planet and all we know will unfold and move in accordance with what things are, as opposed to what we think they are. The Iowa folk singer Greg Brown puts it this way: "The world ain’t what you think it is, it’s just what it is."

This is true of all experience. The Middle East will never be what the neocons want it to be. The EPA can’t turn a wild salmon into a domesticated one just by saying so. A poem is not a self-help book; kudzu isn’t Spanish moss.

Last night I heard a college student ask a question of my friend, the poet and nonfiction writer Kenny Fries. The student wanted to know how disability fit into "identity politics" and Kenny said: "I don’t believe in identity."

Does this mean that Kenny Fries, who happens to have a disability "rejects" his condition? Not at all. But he knows that Spanish moss and kudzu are wildly different "sui generic" and what’s more, they’re different from what any of us might suppose. Put another way: disability is a fractional part of experience.

Some days I fear that in our theory driven age we’ve forgotten the Enlightenment. We can categorize the things of this world. We can even transform our experience. But just so, we shouldn’t see the life of the mind as a subset of worlding.

I think it was Heidegger who made "world" into a verb. It’s early. There’s still some hope for my memory.

S.K.

The normative people who won’t talk directly to a person with a disability are legion as the comment below from Ruth reminds us. How many times have we heard this story? The power chair repairman doesn’t talk to the woman who uses the chair, prefering to speak with her companion. My wife Connie can attest to this same peculiar dynamic. She’s a veteran when it comes to saying: "Well, why don’t you just ask HIM?"

I’ve read lots of books about stigma and disability; books about the unconscious; books about social history; cultural theory; you name it. The bottom line is that "normates" fear pwds because they believe down deep that they could catch a disabling condition by means of discourse.

This offers further proof that people can talk themselves into anything.

My grandfather used to make a private cocktail with gin and dynamite. He imagined that this drink produced beneficial health. The man expired from clogged arteries.

All of this is to say that sub-Cartesian thought has its drawbacks.

"What," you may ask "does gin and dynamite taste like?"

It’s the flavor of terror under the tongue.

S.K.

We are cradled by History. You? No. Not you. You are shrewed. You are exceptionally literate and therefore you’re in charge of History—why heck, you probably conductHistory the way Toscanini conducted the Metropolitan Opera. By God! You’re an autocrat of both facts and influence.

But if you have a disability chances are good that History has its hooks in you. It builds its little walls around you. Frankly, for people with disabilities History functions like a portable play pen; it accompanies us from room to room—encloses, keeps us contained; holds us on display; and we sit inside our baby cages with our appearances by turns sentimental and cute or red faced, temperamental, shaking our rattles.

Every day I step from my house with the goal of finally rejecting this image of History. Yet I am followed down the street by memories and ghosts and the constraining or imprisoning realities of architectures and social systems that won’t let go.

I get on the bus in Iowa City and the driver tells me that they don’t accept dogs. I go through the dumbed down rigamarole explaining the so-called "White Cane Laws" and the ADA. The bus stands still while I try, dispassionately to explain. The driver finally says, "Well I thought those dogs wore blue blankets." "No," I say, as warmly as I can, "They wear a harness."

It’s only 9 in the morning and I’ve already had to shake my rattle while trying, ever so desperately to appear cute.

"Look, Driver! I’m wearing my pajamas with the little feet!"

No wonder those who temporarily seem to have no disabilities are terrified by those who do: they see us in every public setting, still wrapped up and sequestered by our traveling cages.

S.K.

My uncle who was unhappy used to say that he was working too hard. He wouldn’t say it that way. His method involved a figurative use of certain unmentionable body parts and the assertion that owing to the strain of his working life these indescribable anatomical pieces were falling off what one would imagine was his larger body. He would say all of this when bursting in the door after a long day out in the world. IN short: he understood that the true wages of work are the earned leisure that follows the working day and the right to drink beer and forget capitalism.

This is the American equation: Work equals Leisure equals Forgetting the Work…

But what do you do if your work follows you home? And what happens if you have a capacious memory?

Yesterday a woman interviewed me for Radio Free Europe. She asked me (with a thick Eastern European accent) "What do you do for these disabled people?"

It was a well meaning question.

I try not to forget that I’m one of the marginal 30 per cent of the blind who has a job.

I try to never take for granted the extraordinary opportunity I’ve been given both to write and teach.

I worry about the sub-rosa voice that tells me I should slow down and devote more of my time strictly to my own pursuits. This you see is the voice of my uncle—though the narrative is less salty.

"Please,"  I think. "Save me from imagining the random preconditioned vanity that work is merely a ticket to forgetfulness."

Why "Random" and "Preconditioned"? Because the poisonous American voice that will argue your work is just the ticket to well deserved leisure is beamed at each citizen a million times a day—all advertising is based on this idea—even ads for night repair cream and hair growth tonics are built from the world of my uncle’s imaginings. If you just had a good head of hair or firmer breast, well by God you’d have better leisure time.

So the idea that one is working too hard comes at random in America. And this idea is the precondition for the further permission to forget what you’re doing for a living.

I have forgotten my job. I live the American Dream. It’s time to go home and forget what I did today.

Of course millions of Americans don’t think this way. I know this. But there are more people like my uncle than people of discernment.

The TV flickers. It’s Friday. This is a good day for selling forgetfulness.

Tomorrow I will be 53 years old. I’ve been discouraged by employment or human resources types; teachers; even people who work in the vocational rehabilitation business. I’ve been counseled to give up on the dream of ever having a full time job. I remember each day the despair of being unemployed and hearing from the experts that staying home was the most likely outcome for me.

I’ve been discouraged by professionals.

I try to remind myself that leisure is important for a healthy life, but you better not forget where you came from. If forgetfulness is what you think leisure is all about, well, chances are good you’re a shmuck.

S.K.