stevekuusisto

The Medical Industrial Complex

Bill Peace has written an editorial over at his blog Bad Cripple that raises a number of questions about the relationship between disability and the American medical system.

http://badcripple.blogspot.com/2009/08/medical-industrial-complex-normalcy.html

The intersections between warfare and medicine are of course well known but often the repercussions of these industrialized systems, the human repercussions, are less understood. Bill’s post discusses among other things the ways in which both industrialized systems rely on fear to reinforce their hold over the public.

It is a matter of some interest and importance I think that people with disabilities are largely overlooked in the public discussions of health care reform. This is particularly distressing insofar as one in five Americans currently has a disability of some kind and many more will be joining the ranks in the next decade as the boomers continue to age. Certainly from a policy perspective alone our senators and representatives should be working overtime with the lights ablaze to adopt serious health care reform–and yet the lobbyists are deflecting the absolute seriousness of this matter with vintage fear mongering rhetoric which is straight out of the Cold War. One is reminded of the poet Allen Ginsberg’s litany from “Howl” that the Communists are coming and they’re going to steal your family automobile. Someone is going to steal your current health insurance. We must sacrifice our notion of government as a social contract in order to prevent alien hordes from stealing your magnificent and over priced HMO. Well I digress…

People with disabilities represent the nature of human physical life, a fact that in these United States frightens the bejesus out of the normativity industries which are of course promoting wrinkle creams and plastic surgery and medical ablutions of every kind. Some folks in the disability rights and advocacy communities resent the endless promise of medicine to find cures for disability, believing that a cure factored model of disability as a subjective “medicalized” defect reinforces the abjection of pwds. I too believe this though I’m pro-cure for many disabling conditions. Perhaps more than anything I continue to hold out hope that medicine as practiced in the U.S. will learn from disability studies just how limiting it is to conceive of patients as being merely defective healthy people. Such a position is in fact illusory and untenable insofar as all of life and nature resides in paradoxes. As Carl Jung once said: “Human reality is made up of a thousand vulgarities.” We are each destined to fall apart both physically and all too often emotionally. Medicine which cannot comprehend human suffering and admit that much of it is unsolvable is bankrupt both in spiritual and in financial terms. Very often “less cure” is the better road for a patient.

Another way that the current health care debate can be informed by people with disabilities has to do with the religious truth that we cannot understand a thing until we have experienced it inwardly. PWDs know more about the paradoxes and yes, the calamities, and yes, the ironic gifts of our human bodies than the galleries of lobbyists who champion business as usual.

When I was in Washington DC two weeks ago at an arts pow wow sponsored by the Kennedy Center and the National Endowment for the Arts the participants, most of whom had disabilities, were addressed by a representative from the Obama administration who discussed the President’s decision to sign the United Nations human rights charter for people with disabilities. This was well and good but I noticed that health care was scarcely mentioned and I remain convinced that the dialogue about reforming our health care system is skewed toward superfluous ideas about perfect bodies. If we continue to imagine health care in these terms we can be mislead into imagining that health is just another form of self-help commodity fetishism like wrinkle cream–hence its just a shopping choice and not a human right. Disability teaches us that there are indeed real bodies in the balance.

S.K.

Ought and Disability

The therapist, if he or she is any good, knows that “ought” is the worst possible word during analysis–no one who possesses a modicum of ethos knows what another ought to do with the seemingly inchoate and unsolvable cross-roads of consciousness.

Disability enters another line of calculations on the registry. Factor in another row of numbers and the problem of “ought” becomes a darker problem. I’ve grown to think of this as the swan of the underworld, to paraphrase from old Finnish mythology. The Finns believed that beauty persisted underneath our world, where it glided like a swan over the lake of the dead.

How “ought” a person with a disability (admittedly the signifier of tristesse) plan a life? How ought a professional councilor advise? The problem of “ought and disability” is a rich one to say the least. Its a pregnant problem…

I can’t even tell you how to properly mow your lawn or get a job my friend. I can scarcely accomplish these things myself.

What little expertise I possess resides in the business of writing books. I know just enough about that to keep my nose above the water of cultural inattention.

Yet the thing I care most about is the fight to find jobs for people with disabilities.

The word “ought” strangles me like a Russian verb. It hangs in my low throat. It sticks like peasant bread.

What ought to happen is that he or she who holds a task in hand, who releases birds, or protects them; who raises children; who teaches them; who strives to make the ways forward easier or less encumbered for others–much as Eleanor Roosevelt thought “all” should do–that he or she should be applauded and that many creative ways forward should be possible.

The way to bliss should be easier than it currently is, not just for people with disabilities (who surely deserve a hand in this direction) but for all Americans who wish to take even a small leadership position in the arts of healing our planet and our communities.

I imagine that “ought” is a troublesome word. Art is easier.

Until the United States understands that its a creative nation and a diverse country and that its world leadership will indeed come from this remarkable cultural richness I fear that we will remain caught in the lingo of the dying Victorians, which is of course the lingo of the Republican party.

I ought not tell you what you should be. But Lordy you should have the room to become somebody unique.

Where’s the money to be made in uniqueness? That’s our entire history.

So let’s have a new Works Progress Administration. Let’s bring together the artists, the architects, the people with disabilities, the folks who are thinking hard about the provisional nature of our current state and make a new start, a visionary start for a promising century.

I’m not aware of what “ought” ought to do. But I know wheelchair dancers and deaf-blind poets who would love to talk with people in the corporate sector.

Now is the time for our richness of diversity and able-ness to mean something great.

S.K.

Dancing Wheels in Cleveland, August 20

Get Ready to Awaken Your IMAGINATION…

…as The Dancing Wheels Company presents Imagination, an evening that will delight the young- and the young at heart!

Co-presented by The Dancing Wheels Company and Cain Park/City of Cleveland Heights, the evening will include a mix of world premieres and Company favorites, featuring:

Alice in Wonderland…

Like It’s Never Been Seen Before!

Don’t miss this family-friendly rendition by choreographer Robert Wesner that is quite a departure from Lewis Carroll’s version. With a mix of sassy dance and lively reggae music, it will have you dancing in your seats!

Also featuring:
Big Trucks and Leverage (excerpt) · Stuart Pimsler (’08)

Common Cause · Sara Whale (Premiere)
Crimson · Lisa K. Lock
Variation on a Choice · Carly Dorman &

Sara Lawrence-Sucato

Firefly · Hoang Ngoc Dang (Premiere)

For a sneak peak of the performance of Alice in Wonderland, click here…..

Video Preview

So don’t be late for this very important date! We will see you under the stars!

Who:

The Dancing Wheels Company

Where:

Cain Park Evans Amphitheater, 40 Severance Circle, Cleveland Heights, Ohio 44118

When:

August 20, 2009 at 8:00 p.m.

For Tickets:

Call:

216.371.3000

Log onto:

www.cainpark.com

In advance:

$20 center/front

$18 for back/sides

$16 lawn

Day of show:

$23/$21/$19

Special Dancing Wheels discount available if you mention the code “29” to the box office. Discounts also for FCP, MIL, SEN, STU.

For any accessibility needs, please call 216.432.0306

Join Our Mailing List!

Save 25%

The Dancing Wheels Company wishes to thank its generous sponsors:

The George Gund Foundation

Fool Watching in America

“If one does not understand a person, one tends to regard him as a fool.” (Jung)

In the 19th century Americans were taught civics, a process which among other things instilled in most citizens a sense of structural regard for the views of others. By the mid sixties American public education had largely abandoned civics in favor of “social studies” which even to this day tends to suborn civics to a week long unit–usually in the sixth grade or so. But civics is more than merely learning how a bill becomes a law: its about how to achieve good results in respect to your neighbor. Its about social psychology. And yes, its about the “golden rule”. The G.R. is the best shorthand to avoid the subjectivity which allows us to imagine our neighbors as fools. How did you forget we are all part of the same twilight?

Strife and misunderstanding are better stories than civics and successful small “d” democracy and you can see the effects of this in the 24 hour talk cycle cable television and radio industries. Carl Jung again: “We still attribute to the other fellow all the evil and inferior qualities that we do not like to recognize in ourselves.”

Well of course. But the commodification of this weakness coupled with the failure to teach civics means that Americans see one another as betes noirs and scapegoats and the effects of this are actually rather dangerous. I have written on this blog or have referenced story after story about police abuse or administrative abuse of people with disabilities–especially those with psychiatric or intellectual disabilities.

What would a better education in social psychology achieve? The most important thing I think is that it would teach people to meditate on the lowly side of their own natures–while I don’t like William Bennet much, I like his Book of Virtues. “What would you do little boy if you saw a blind man selling apples and one of his apples fell to the ground? A. I’d steal it and run away. B. I’d tell the blind man and hand it back to him.

The problem of course is that not understanding our own lowly capacities we are too quick to project them onto our undeserving neighbors.

Look at Lou Dobbs.

Jung again: “A little less hypocrisy and a little more tolerance towards oneself can only have good results in respect for our neighbor; for we are all too prone to transfer to our fellows the injustice and violence we inflict upon our own natures.”

What would you do little boy? Little girl?

“I’d taser a deaf man seated on a toilet.”

S.K.

The Goods

“Complete human beings are exceptions. It is true that an overwhelming majority of educated people are fragmentary personalities and have a lot of substitutes instead of the genuine goods.”

–Carl Jung

Thinking about “the goods”:

These days I innately feel the things I used to study with books. As a younger man I knew that paradox was the key to understanding the fierce problem of life and of mind. But I grasped this in the manner of a developing personality and not as a deeper quality of imagination and intuition.

I talked more back then.

In my twenties I worked very hard to shape a persona.

I liked the masks of Yeats more than the poetry.

“Hey kid, how do you like it, there, in your germ state?”

The older one who feels the paradoxes of mind and body without staged or dramatic ironies is trustworthy. But his humor must be intact and he must be unperturbed by his own uselessness. Note to self: get used to the company which is exile. Got that?

Loving. Suffering. Weeping in the transitions. Life is simply a lacerated fullness. (Neruda). I cannot explain it to you, but its best to live close to the water. The fish are swept clean in the shallows. I cannot explain it to you.

All true consciousness ordains its own departures. Make a joke out of that big Man!

Fine: I’ll make a joke. Let the charlatans come to my funeral. Let them wear what they like. The last thing anyone remembers is his life.

Today was a beautiful day although it rained some. I remembered that paradox is a possible blue.

My inner conflicts promise some valuable results. I don’t have to think about it much. I cannot explain it to you.

Twilight. Disappearances. Moon behind cloud. Now we can stop thinking. Its enough to be sad and rich in your house.

S.K.

El Pueblo

–after Pablo Neruda and in memory of my father and his friends

The men I remember

Are lost to the centuries

Caught on ships of wind

Or they stand

In abundant light

All of them

Swept clean

Of songs.

But how I wish they could call out,

Wish them transparency and sound,

Enough to tame the radio

And roof clocks,

Or the small birds at twilight,

Enough to give the bread and shadows

A slim clarity…

Really, this is the only wayward tune I’m waiting for…

–Stephen Kuusisto

Smell of the Lake

Which is also the smell of shade and stars; smell of the long past; of moonlight; of being carried away; simple birds; green ferns; old planks; thunder coming…

Lake Winnipesaukee

August 2, 2009

Hope and Altruism

This story comes to us via The Inclusion Daily Express.

S.K.

Texas Man Brings Hope To ‘Forgotten’ Disabled Iraqi Kids
(CNN News)
July 30, 2009
BAGHDAD, IRAQ– [Excerpt] Brad Blauser lives in war-torn Baghdad, where he doesn’t earn a paycheck and is thousands of miles from his family. But he has no intention of leaving anytime soon.

For the past four years, the Dallas, Texas, native has been providing hope to hundreds of disabled Iraqi children and their families through the distribution of pediatric wheelchairs.

“Disabled children — they’re really the forgotten ones in this war,” said Blauser, 43. “They are often not seen in society.”

Blauser arrived in Iraq as a civilian contractor in 2004, but quit that job last year to devote himself full time to his program, without compensation.

An estimated one in seven Iraqi children ages 2 to 14 lives with a disability, according to UNICEF. Illnesses such as Spina bifida, palsy and polio leave them unable to walk.

Entire article:
Texas man brings hope to ‘forgotten’ disabled Iraqi kids
http://www.cnn.com/2009/WORLD/meast/07/30/cnnheroes.blad.blauser/
Related:
Disabilities And The “War On Terror” (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/war.htm

What Disability Knows: Part Two

People with disabilities know that the physical body, particularly in its most diverse and unusual extensions resists interpretation. At the cultural level interpretation is the reasoned analysis of difference but history shows us there’s no such thing as reason when we are in the provinces of strangeness. Its a mistake of The Enlightenment to have imagined such a possibility.

Carl Jung:

The vast majority of people are quite incapable of putting themselves individually into the mind of another. This is indeed a singularly rare art, and, truth to tell, it does not take us very far. Even the man whom we think we know best and who assures us himself that we understand him through and through is at bottom a stranger to us. He is “different”. The most we can do, and the best, is to have at least some inkling of his otherness, to respect it, and to guard against the outrageous stupidity of wishing to interpret it.

The cripple, the blind, the wheelchair user, the deaf who speak with their hands, are in fact, collectively, only “inklings” to a general population that fears physical calamity. People with disabilities cannot be interpreted by normal people, or “normates” to borrow Rose Marie Garland-Thompson’s term. The best that can be achieved by those who do not currently have a disability is that they will muster a partial sense of what this otherness is like–as a means of respecting it. And in turn as a token of that respect that they will resist interpretation.

Disability cannot be a metaphor. All metaphorical constructions of disability are products of sentimentality. Able bodied assumptions about physical catastrophe depend on emotional extravagances. Sentimentality is of course always the other side of aggression. This is a condition of a primitive and pejorative process of symbol making. Accordingly, the worst thing that can happen to a person with a disability who seeks to create art is that he or she will succumb to this sentimentality. The “overcoming narrative” is a prime example of sentimentality in the service of emotional extravagance.

I will answer myself, reply to myself without speaking.

Every victory contains the germ of future defeat. (Jung again.) Let us allow disability to reside on a symbolic level as the victory (a matter of civil engagement) and the unlocking (symbolically) of defeat–the body is ephemeral, inconclusive as a reliable agent of beauty–indeed we do not know what beauty is. That is the germ of defeat. Once the normates get around to understanding this they will live with less terror. That defeat will be the germ of a future victory. Imagine no longer needing to look young; to pretend in a chain reaction that your contentment lies in physical resemblance.

I do not believe that disability is married to normativity. I do not believe in the “mainstream”. Recently I told a group of artists and advocates for people with disabilities at The Kennedy Center for the Arts in Washington, DC that “the mainstream is one of the great, tragic ideas of our time. There is no mainstream. No one is physically solid, reliable, capable as a solo act, protected against catastrophe; there is only “the stream” in which each one of us must work to find solace in meanings.”

I cannot represent the flight of an arrow with a drawing. And I can’t describe the lines of luck.

Did you notice that no one can?

–Stephen Kuusisto

Iowa City

July 31, 2009