Author: stevekuusisto

In the world of disability advocacy there’s a term called "the defective people industry" which designates modes of thinking or organizational conduct that relies on the status quo. The "DPI" is vigorous in its self preservation and it tends to make a lot of dough.

Suppose you wanted to cure something innocuous like loud gum chewing.  (I’ve chosen this one because I have this problem.  Give me a stick of gum and within a minute I’m grinding, snapping, and gnawing like a weasel caught in a trap.)

The first thing you do is gather up a group of experts.  You will want some social scientists, some anti-social scientists, at least ten thousand social workers, an equal number of social security administrators, and you will want dentists and folks from the false teeth industry.  Of course you’ll also want the chewing gum manufacturers and a vast array of representatives from the therapy industries.  You might also want to involve at least one aroma expert.

After you’ve gathered all these authorities you raise a bunch of money.  Sometimes you already have the money before you gather your experts but most often it works the other way.

Then you print some fancy brochures.

You will also need to have catered lunches, new carpeting in your headquarters, and lots of meetings.

You will want to have many studies about annoying gum chewing.

Its really important to foster public debate about the mystery of the phenomenon. For example:

The "loud gum chewing is caused by creepy Freudian anxiety" camp. vs. the "traumatic gum chomping caused by hard to isolate neurological defect in the lizard brain (otherwise known as the limbic node).

While all of this is going on you will want to create a mechanism whereby you give out small amounts of research funding to a vast array of researchers.  These grants should be enough for the researchers to buy coffee filters and post-its.

By analogy the method is akin to giving ten thousand people enough money to study the feasibility of manufacturing one isolated part of an automobile.  No one is given the money to actually make a real car part, much less an operational vehicle.

The DPI can work like this for years.

No sector of society is without its varieties of the defective people industry.

There’s government of course but also don’t forget non-profit agencies, universities, and industry .

In "real life" there are lives in the balance because the DPI is a very entrenched system.

There are people today in the United States who are trapped in hospitals because even though their respective medical conditions will allow them to live in the community, local and state governmental agencies have a vested interest in keeping hospital beds filled.  This travesty continues despite the fact that community based living is less expensive for many of the people who are currently being warehoused.

This situation is no joke.

"Who gets warehoused?" you ask?

People who have been paralyzed in the manner of Christopher Reeve but whose insurance has run out.  One fine day your hired attendant is no longer available.  Then the local state government says, "well, don’t confuse us with the facts, we have a hard to find and dark little room for you far away from your community.  We will put you there even though it would be cheaper to let you live your life among people."

As a friend of mine would say, "In the United States you have the right to live in a closet if you are paralyzed and your insurance runs out."

S.K.

One of the chief assumptions of literary writers is that the art of prose requires acute vision.  Perhaps this idea owes a good deal to the oft repeated anecdote about young Ernest Hemingway who got off a train during the first world war in order to write his impressions about a dead dog on a rail platform.  In any event, by the 1920’s literary prose was assumed to be a slightly dressier form of journalism.  The symbiosis of the modern news photo with fictive verisimilitude became the new mosaic standard by the end of WW I.

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"How can you write such clear imagery when you can’t see?"  I have been asked this question more often than one might suspect and yes, nine times out of ten the question comes from a writer.

The prevalence of the question suggests how deeply contemporary literary writing has become invested in the ohptho-centric view of the writer as photo-journalist.

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My journal is a tabula rasa of the other senses.  I travel a good deal and I record my "post-visual" observations without concern for the expected fidelities of the 20^th century journalist.  I don’t linger on the fact that I can’t see.  I use the notebook as a place of speculation and the freedom this gives me is essential to my practice as a writer.

Here is a notebook entry:

Kurfurstendam (Berlin)

It was raining and I borrowed a hat from the hotel’s doorman.

It was my birthday. I was all by myself.

I was born a twin and my identical brother died just hours after our birth.

I found that I was walking in Berlin and weeping in the rain.

I don’t know: I must have been twenty five years old.

in those days I could see shapes as well as colors so I followed blue jackets essentially at random.

I recited silently a list of jazz standards:

Smoke Gets In Your Eyes (As sung by Rosemary Clooney)

One For My Baby

Thanks For the Memories

I walked for hours in the rain, blind and lonely in Berlin, with all those songs in my mind…

A stranger wrote me a fortnight ago and observed that my nonfiction is steeped in loneliness. This is true, for as many people with disabilities will acknowledge, the "formative years" are often solitary ones for disabled children. I spent the majority of my boyhood time in the attic of my grandmother’s house listening to a wind-up Victrola or else I walked by myself in the woods.

I have found that at fifty two I’m still lonely in spirit. I do not feel sorry for myself, nor do I need reassurance from family and friends–at least not overmuch. I am lonely on the inside. I can stand in a room and smile, tell a joke, sing a homemade song, but behind the tall grass of my familiar, inner life, there under the moon I am lonely.

I am in no way singular because of this. The man across the street who is picking the last tomatoes of the summer is lonely. The woman I met this morning who teaches linguistics at the university is lonely. My friends, my wife, all my relatives are quietly alone though we are trained to withhold this even from the psychiatrist or the priest.

The poet William Carlos Williams said in one of his poems "I am lonely. I am best so." I remember reading those words as a college sophomore and I felt the proper fit in my soul.

The feeling of estrangement is not a social matter as the boy or girl would imagine. The "difference" as Emily Dickinson wrote "is internal, where the meanings are."

The soul is needy as an empty pocket. It is thirsty as flesh itself but the soul cannot be quenched with drink or a good home in a nice neighborhood.

The soul senses that the full moon has risen and as the Spanish poet Federico Garcia Lorca wrote: "the heart feels it is a little island in the infinite."

The soul is in the condition of static or pure loneliness. This is why Jesus said to his disciples: "My father’s house has many mansions. If it were not so, I would not tell you."

Of all the lines in the New Testament those are for me, the most comforting. This is according to my soul. My soul, that lonely intelligence that hugs my tissues and bones. This soul that cannot get used to life. This soul that insists on walking around so that we together can work out the geometry of being alone in our shared and threshed hours.

Have you ever harvested the last sunflowers because the frost is coming? I did this once with some friends. We brought the half wild and stately sunflowers into the old house and we propped them against the hearth. We sang some songs and drank a little wine. Unspoken? Every one of us had a thirsty soul and we could, it turned out, give our souls a true room and some bright companionship.

SK

Last night I had a massage for the first time in 8 years. I have a lot of scar tissue in my left shoulder because I have been working a guide dog for over a decade. Guide dogs pull continually as a principal means of establishing navigational contact with their blind companions. The scapular area in my left shoulder is quite painful.

When I told my wife this morning that I’d gotten a massage last night, she wanted to know if it was painful. I said "yes" and she, like the true friend all spouses should be, said: "good!" Then she wanted to know if I "took it like a man." "Yes," I said, "I wept silently into my pillow."

I wonder sometimes if the able bodied public knows that people with disabilities have stress injuries that are the result of their accommodations. Wheelchair users have carpal tunnel syndrome; back aches, neck aches, profound tension headaches—all of these things are essentially the norm for PWDs.

I’m not interested in the business of "comparative pain"—the old farmer and his wife trading jobs gambit. I don’t like it when non-disabled people trot out the hoary hypothetical: "Which would you rather be? Blind or deaf?"

The proper answer is "neither" unless you are already blind or deaf, in which case you have a strong familiarity with the fatuous nature of that question. "On the whole, I’d rather be in Philadelphia."

Nonetheless, everyone hopes, whether they’re disabled or non-disabled, to have a static position regarding suffering. If we’re masochistic we want to know that our private pain is worse than the sufferings of the fellow next door. If we’re sadistic we want others to relive the life of Job.

None of this has anything to do with my wife. She knows that a good massage will be necessarily agonizing if it has therapeutic value. And hey, we all enjoy a teensy bit of suffering in others.

I paid greenbacks for my massage. I’m lucky to have the means to get some "body work" done. If I ever win the lottery I will start a foundation so that all PWDs can have the same experience.

Now I must put my pillow in the dryer.

Ernest Hemingway ain’t got nothin’ on this baby!

SK