Author: stevekuusisto

Anne Baber Wallis has written an op-ed piece in the local Iowa City newspaper that highlights a case of physical abuse that occurred here not so very long ago. In this case a young man with a developmental disability was physically assaulted in his group home.

These stories are legion. We have blogged about their dreadful ubiquity on this site and we shall continue to do so as long as it takes to bring about reform.

In effect, the abuse of people with disabilities and the abuses of elders or of children are “of a package” insofar as all three circumstances often involve the parings of untrained and underpaid strangers alongside people who are in need of assistance, assistance which is a complicated matter more often than not.

There have been many wake up calls in this nation over the past several years. I’d say the ringing of these bells signals a three alarm fire.

S.K.   

Let us propose that the rain possesses the character of humankind, in this case my uncle (long deceased) who was afraid of fast moving clouds and who would hightail it by means of any available conveyance should clouds trouble his vision.

Accordingly let us imagine that the rain is afraid of its origins–a purely existential condition to be sure. The rain is afraid of its parents. The rain fears its ancestry. The rain believes it might go mad like its mother who was darkly flamboyant and who kept strange pets.

For this is the way of things. Even the rain can be perplexed. In good years and bad it has feelings and pish-posh if you think science can prove or disprove the matter. 

Science knows nothing. And the rain knows more than it claims in customary circles.

As I say, this is the way of things. Dull matter and its cohorts have plenty of ideas, bad though they may be. The rain for instance isn’t much of a thinker. In this way the rain is very like my uncle who we’ve already mentioned had a phobia about darkling clouds. (By the way, my uncle was a large man and to see him run from the clouds was certainly amusing. Many in our clan would gather on the dark lawn and watch him gallop terribly over the far hill. That of course is the cruelty of families. I am not much interested in that subject. Tolstoi and Faulkner and John Updike have largely exhausted cruel families as a matter of literary contemplation though the writers of memoir persist in mining cruelties in fealty to their own union.

Like I was saying the rain isn’t much of a thinker. You’re not supposed to say such things in these ecologically fragile times. One should I imagine venerate deus faber and treat natural facts with religious awe. I don’t know. I just know that the rain is stupid. Just ask your children if you have any. The rain is dull as a school superintendent as Mark Twain might say. The rain is dull as death.

There are of course poets who can speak on the rain’s behalf. But poets will speak on behalf of anything that doesn’t talk back. Pablo Neruda wrote an Ode to Salt. He said that he could hear the salt singing in its shaker–but poets will say anything for effect. I don’t believe salt is any smarter than the rain. The rain is as dull and predictable as a politician’s facts.

My uncle ran from the clouds but was fine about the rain. His problems resided in anticipation. Rain knows nothing about such matters. Rain is rain. Its an atomized, broadly flailing gravitational spindrift with cold hands.

You say: “He’d think differently if he was a farmer.”

Farmers don’t care about the rain save for its presence. For the farmer rain is nothing more than a necessary functionary. Like an accountant. Unless there’s something odd about you I don’t think you’d call an accountant for stimulation. (Doubtless accountants will write me. I shall not rest my case.)

To the farmer rain is just utility. They don’t want too much or too little. And they like it to stay dull.

You say: “He’d think differently if he was in a hurricane.”

Rain driven by a hurricane is still dull. Its the wind that’s feisty.

Oh the rain is dull alright. For competition it has only the fresh sawdust.

I feel it coming. Shortly now it will rain in Iowa City.

S.K.

The title here is from Lawrence Ferlinghetti’s poem entitled “In Goya’s Greatest Scenes”–a poem that asserts (correctly) that in the Spanish painter’s greatest works we see people presented in the act of achieving their suffering. We see them on the ordinary roads, spines hunched, faces contorted, walking among the blasted trees and carnage of humanity. Ferlinghetti points out that Goya’s people are “so bloody real” –doubly so for they are arranged along the roads.

Me? I thought of the line tonight. I’d gone to the local shopping mall with my wife for the half innocent purpose known as buying some trousers. (I prefer “trousers” to “pants”. I prefer “illud tempus” to “how old are you?”–there’s no help for it.)  

I was trying on chinos in J.C. Penney. Quickly I found myself hopping on one leg in a stuffy closet. There were common pins strewn about the floor. I could feel them through my socks. I thought of the quaint, Victorian idea that Beauty stands and waits for whatever passes for immanence. There is no possibility of beauty when one is trying on pantaloons.

We got out of there with trousers in a sack.

And because we are not shopping mall people we thought we’d walk through the inner arcades. This was a mistake. It is always a mistake.

Could you have seen our faces you might have remarked on our respective achievement of suffering. It is a mild suffering as compared to the gibbet and cement skies and bayonets of Goya’s paintings. It’s silly to dare the placement of mild suffering alongside tumbrils and I admit it.

But walking past the iridescent, outsized atomic colors of teenage clothing and the relentless store fronts hawking goo-gaws that promote imbecile illusions of commidified happiness I felt paranoid and hysterical. I kept it to myself. I’m a poet after all. I always imagine that I’ll pick my time and write a small magazine piece. I’ll do something.

And then my wife Connie said: “I feel old.”

And that was the thing. The mall with all its torturous outcryings of provincial teenage unhappiness and its anodyne trinkets and calculating fashions is enough to give one a case of rickets.

As we walked past the food court I remembered the poet Kenneth Rexroth’s hilarious observation about Scottish cuisine–faced with Scottish food he observed that it would be better to be fed intravenously.

Ah, sunflower. We shall grow old but not in the mall.

S.K.

I believe it was Simone Weil who wrote that frailty alone is human–a broken, ground up heart…

It is in this way that people with disabilities are in the vanguard of human awareness or “consciousness”. We work with our ground up hearts. Meanwhile our frailty is akin to an extra gravitational force: every ditch can be our undoing; each sidewalk without a ramp; the restrooms that are not modified (in which a wheelchair may get stuck or tip over); the dangerous transit system; the intolerant assistance of airline personnel–extra gravity…

PWDs (persons with disabilities) are the bearers of ground up hearts, the hearts of frailty and there is no sophistry that can alter this.

My argument such as it is concerns the potential of frailty for as Weil has correctly understood it is the most humanizing factor in our worldly lives–frailty is both past tense (we have been made frail) or it is a promise insofar as we will become so.

Those who dread this set of circumstances dread life itself. And in turn the frailty dreaders dread disabilities which, as I say, is to dread life itself.  

Such dread may be thought of as “character armor” and its related industry (or the manufacture of its chain mail) is constructed from the pure dispossession of life or of what Freud called the reality principle.

Meanwhile the wheelchair tips over. The blind person comes terribly close to being struck by a car. Each figure survives, rights himself, moves ahead and bears the knowledge of the ground up heart…

Here are some things my ground up heart has told me recently:

There is no breakthrough without being  opposed or hurt and what the hell, that’s the way of nature. True nature ain’t necessarily your friend, friend.

Go ahead: stretch yourself to the breaking point. You’ll learn something. The ground up heart guarantees it.

There are no true hearts on television. Get rid of it.

The whole body is a dangerous fantasy. Get rid of it.

Broken heart. Broken speech. Poetry.

Just hang on.

Twist and shout.

“C’mon c’mon c’mon now baby

We can work it on out…”

Ground up hearts love dancing…

S.K.  

I awoke at 5 AM this morning (my last morning in New Hampshire for the summer) to the sounds of a loudspeaker broadcasting from somewhere across the lake. It was a still morning, the kind of stillness that attracts the loons. But now there was some kind of horrible, Reich rally happening in the near town of Gilford. It sounded like a Nuremberg reenactment. (Its still going on as I type.)

My first thought was that some drunks had stolen a tour boat and were erratically plying the lake and calling out intemperately. Then I imagined that some kind of weather related warning was coming from the shore. In any case the amplified syllables were almost clear. But not clear enough to know the true matter. I thought of a simulation device I once saw in a San Francisco museum–it simulated what a cochlear implant sounds like. Buzzing and then some words and then more confusion…

Like most people who find themselves experiencing consternation and who are among companions I did the dishonorable thing and I woke up my sister. Together we went down on the dock and she confirmed my worst suspicions: its a religious rally, a bible thumper’s camp. Its the ghost of Billy Sunday clamoring quite literally from a mountain.  

This is not confirmed as of this writing. Perhaps its a convention of wheat lobbyists. Or a gathering of muk-luk wearing anthroposophists.

But my sister’s speculation (based on local history) seems likely.

To which I merely add that Jesus spoke on the mount to those who were inclined to follow him up there. I’m all for Jesus. But I’ll wager that he wouldn’t have sanctioned disturbing the loons. I’m just guessing.

The ubiquitous noise of amplified bible thumping is, as they used to say in the sixties, “a turn off”.

Its a carnival over there on the side of the mountain. Its aggressive, largely thoughtless, intemperate, shrill.

That’s not the church I love.

Good by New Hampshire. I’m going back to Iowa now. I’ll try to remember your piney woods without the insensitive equipment.

S.K.   

This article is excerpted by The Inclusion Daily Express.

CILs Angered Over Loss Of Personal Assistant Program
(The Telegraph)
August 18, 2009
ALTON, ILLINOIS– [Excerpt] A disability rights agency is fighting Gov. Pat Quinn’s plan to eliminate what it says is a vital home services program to help balance the state budget.

The statewide Personal Assistant Program has been canceled, effective Sept. 30.

IMPACT Inc. of Alton is one of 22 state Centers for Independent Living that will cease to provide training to persons who rely on personal assistants for in-home services, to recruit and train potential PAs, and to maintain a referral list of trained PAs.

“This cut is far worse than any budget cut,” IMPACT Executive Director Cathy Contarino said. “If the governor doesn’t rescind his decision, there will be no hope that the program can survive. It’s devastating; he is cutting without thinking.”

For people with disabilities, PAs can mean the difference between living independently and being forced to spend their lives in institutionalized care.

Entire article:
IMPACT bemoans potential loss of home program
http://www.thetelegraph.com/news/wood-30198-impact-state.html

I suppose my ancestral speaker is old Dean Swift who sold those Irish babies to hungry Londoners for in this instance I feel the intemperate and hob-goblined urge to sell flesh.

This is not what you would suppose. There’s nothing lurid about the thing. I want to sell flesh as an Apollonian artifact, something of the clinic about it, the smell of the hospital in everyone’s nostrils. I want to sell the cripples back to the doctors; the doctors back to their aged parents; the hospital administrators back to the insurance companies; the insurance executives to their respective brand of ethicist. But above all I want to sell flesh.

Now you will say (for indeed you must always be saying–that’s the rule and advantage of literary consciousness, you get to talk back to the squiggles) “Mr. Kuusisto, what precisely are you driving at?” And I will reply that people with disabilities are in deep trouble these days. The trouble may vary from land to land but they’re in trouble all over the place.

Its time to start selling some flesh.

There’s nothing of Shylock about this. There’s not a whiff of advantage to the seller.

Consider the doctors in Seattle who performed the famous “Ashley Treatment” and who essentially rendered a profoundly disabled child “forever tiny” so that her parents would not have to care for a developmentally disabled “large person”.

Much has been written about “The Ashley Treatment” (including posts here at POTB) but I’ll say again for the umpteenth time that the procedure that was performed on a real girl, a procedure that involved removing her uterus and breast buds and the application of hormones is essentially a medical experiment rather than a proven practice and accordingly it violates the first rule of medicine which is, of course, “to do no harm”.

The Seattle physicians believed (and still believe) that the girl in question was so developmentally damaged that this procedure would never be a factor in her mental life. The very mode of thinking gives me the chills. The reduction of a living human being to what I will here call the “anti-cure” represents the worst features of what disability studies scholars have called “the medical model of disability”. The disabled are, in this instance, thought of as defective normal people who need a medical cure in order to lead whole and productive lives in a wondrous world of normal people. In turn, the patient, any patient, but especially a patient with a disability is conceived of as a defective healthy person. Ashley’s “anti-cure” is the convoluted pathos of this model–incurable means something even more sinister for it creates a reified abstraction of the disabled human–we shall freeze the incurable girl into something forever tiny–hence she shall have no relevance to the medical model’s stasis and anti-stasis. The disabled child is now an artifact.  

The Seattle physicians continue to argue their position. They made a small, defective person forever small as a means of assistance to the girl’s parents.

I want to sell the physicians. Who will buy them? You sir! Yes! You with the French novel! These men and women can be yours! Yes! You can lecture them on commodity fetishism! Step right up!

**

The current condition of people with disabilities in respect to American health care is dismal. The lobbying against health care reform is in part a matter of rear guard defense by the insurance industry which renders disability “a pre-existing condition” or induces “total disability” as a cap when paying out for patient care. In either case people with disabilities are forced to rely in disproportionate numbers on Medicare and Medicaid. Or worse: the V.A.

I want to sell the insurance lobbyists and the insurance executives. Who will buy them? Oh yeah. They’ve already been bought.

Of course I’m being wilfully simplistic. No one would buy an insurance lobbyist or executive for eating. But experimentation remains a possibility. I think it would be instructive for instance to shrink some of them. Once they are around three and a half feet tall we can turn them loose on a desert island and have a reality TV show called “Hey! You’ve Got Rickets!” Wouldn’t that be fun?

Just some random thoughts tonight while America rejects health care reform and signals its desire to go down the drain.

Without effective government sponsored health care reform the rest of us will be on that reality show. Won’t that be fun?

S.K.     

My faith resides in this house, a vaguely leaning house, changing and crossing in the seasons.

The body of the disabled woman or man, child or elder takes the sharp sun

Or the rain that comes from dreams–unravels each–makes ruthless beauty.

You don’t have to take my word for it. Get a stethoscope. Every beat creates the world.

Every hammer fall. Each banging of the door.

The leaning house is the soulful house, phantoms in every timber.

Every minute is absorbed under the steep roof.

Each room has its secret spots–corners where other lives come–

& the house, a vaguely leaning house, a house of blood and salt

Takes everyone in.

What appears to be in ruins is at once humble and distinguished.

S.K.    

By Andrea Scarpino

Los Angeles

I remember watching Julia Child with my mother when I was little. I was fascinated by her hands, how large they seemed on the television screen, how quickly and competently they did things in the kitchen I had never seen my mother do. I remember my mother sitting with a notepad, furiously scribbling ingredients and instructions as Julia demonstrated. How many tablespoons did she say? my mother would ask. How long is it supposed to bake?

So it should come as no surprise that I fell in love with Meryl Streep’s version of Julia Child in the film Julie & Julia. She looked like Julia Child, moved with her same awkward grace, somehow seemed, through the magic of filmmaking I guess, to have her same huge hands. Julie, on the other hand, I pretty much despised. Not Amy Adams the actor, or the actual Julie Powell, of whom I know absolutely nothing other than her project blogging as she cooked all of the recipes in Julia Child’s famous book, Mastering the Art of French Cooking. But the character on the screen, who struck me as whiny, annoying, a little too unsure of herself.

The friends I saw the film with agreed: Julia is amazing, Julie makes you want to stab yourself. I’ve since read similar reviews online, that the film should have been a documentary of Julia Child’s life, that Julie just rode Julia’s coattails to fame. So I’ve started to wonder what all the attacks on Julie’s character are really about, if I haven’t fallen into a trap of hating in another person what I hate about myself. It’s true that Julia Child lived an amazing and exciting life, one that would be the envy of most people. But it may also be true that Julie’s life is closer to our own everyday lives, complete with mundane annoyances, silly arguments with our partners, struggles to figure out who we really want to be in the world.

And we shouldn’t forget that Julia’s life was also one of privilege. She grew up with money and education, married a man with money and education, learned to cook because she really didn’t have much else to do with her time. This isn’t a criticism, of course, but just a questioning. Is it easier to love and admire Julia Child (at least the Julia in the film) because her life seemed so interesting, romantic, full of adventure and intrigue? A life the likes of which most of us will never experience? Is it easier to despise Julie because she reminds us so closely of ourselves? There, in front of us, splayed out on the big screen: all of our own questionings, annoyances, all of our dreams of something bigger that go unfulfilled, all of our own whininess.

I like to think of myself more as a Julia than a Julie, more of an adventurer, someone enthusiastically embracing her life, learning new things, unafraid of what other people say . . . but that could be just wishful thinking. Maybe I disliked Julie because she reminded me of me.

Whatever the case, I’ll continue to adore Julia Child just like the real Julie Powell did, even after learning the legend wasn’t a fan of her project. Truth is, the people who show us how to live wide open lives probably think our middling ones are pretty boring. And maybe that’s okay, as long as we get to continue striving to follow their leads.

Andrea Scarpino is the west coast Bureau Chief of POTB. You can visit her at:

www.andreascarpino.com

Today I am thinking of my body or yours: lengthening or softening; blind or opaque; aching at the tendons or sighing.

I am thinking and thinking for the body is less understood than the sea’s foam. This body that sags from season after season of snows and droughts.

This body like a poor man’s teeth. This body that breathes all the air and does not know its own name. Body of walls, staircases, narrow windows, of measures, of secret hearts.

I sat up late last night under stars and read the words of old men. They remain in agreement that the soul opens.

The soul opens like a valve and the pearl radiances of your private electricity rush to meet the maternal hands of angels or the magnetic marl of stars. The old men believe that the body is just a sack, a granary, only clotted weeds, sulphur, nothing more… 

I know this cannot be true. The body ticks like oak beams. Bones and sinews, muscles and blood possess their own mastery. We move from silence to silence in this dress. If you don’t think that’s intelligence, get out.

This body with its disability is protruding from the hard land. It is a house on hard land.

The disabled body has its own savage fertility. It is a house that builds its own secret and necessary rooms.

It doesn’t always sleep at night.

It builds a solarium where there’s no sun.

It inaugurates springtime with a long porch.

It supports the sky in winter.

Like all things having to do with magic not everyone can see it.

How sharp this body is! How much it knows!

Both its surfaces and its interiors are always moving.

The disabled body is immemorial.

It will trace and retrace your life with its vatic architectures.

It has its own bright grace.

It doesn’t give a damn about corruption. Knows more about the minutes than Duns Scotus. Doesn’t need to be in a rush to live. Doesn’t believe in unvarying principles. Knows all about wandering tribes…

The disabled body is a thinking woman’s house; a thinking man’s; the home of a smart child; stands on a hill; a book of lessons like any broken door…

S.K.