Planet of the Blind

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.

 

The following excerpted article comes to us from The Inclusion Daily Express. We are uplifted by this news.

S.K.

Jury Convicts Former Texas Institution Worker For Causing Injury To Residents

(ABC News)
August 13, 2008

CORPUS CHRISTI, TEXAS– [Excerpt] A former Texas State School employee was found guilty today of injuring mentally disabled residents in a case that has gained notoriety for its “fight club” videos – in which workers at a Corpus Christi, Texas state school allegedly forced residents to fight one another while the employees taped the incidents on their cell phones.

Jesse Salazar, 25, was convicted of intentionally causing injury to a disabled person and faces up to 10 years behind bars.

The jury deliberated for less than two hours before coming back with a verdict.

Six former employees – who were since fired – have been charged in the case.

Entire article:
‘Fight Club’ Perpetrator Convicted of Injuring Mentally Disabled State Residents
http://abcnews.go.com/Blotter/story?id=8323288&page=1

Los Angeles

 

By Andrea Scarpino

 

I’m writing a collection of poems about my father’s death, and about loss more broadly, how the dead haunt us, how we want to be haunted. My friend Jennifer said after reading my collection, The first couple of years, the dead haunt you all the time. After that, you wish you could have their ghosts back. She knows what she’s talking about; her father also died. But I don’t think she means literal hauntings, although I didn’t ask. I think she means that we miss the dead so much at first that everything we used to do with them is tinged with sadness, every smell is meaningful, every anniversary, holiday, every insignificant thing—the dead one’s pencil perhaps—grows in importance and weight. Eventually, loss becomes less distinct, less sharp—it has to if we’re going to survive—and we long sometimes for those early days when we could almost feel our dead standing watch, walking on the journey next to us.

When my father first died, my friend Chris told me to write through it. So I did. I take advice very literally. My father, for example, used to always tell me to run like hell if anything bad happened. He meant if a fire broke out in a restaurant or a gunman walked into the supermarket. But after he died, I started running and I haven’t stopped since. Now I think running like hell cures most everything, including the flu and bouts of anxiety, and maybe writing through it does too.

In any case, I’ve found, lately, that I just want to be done with these poems. I don’t want to order them one more time, move commas around again, think about titles or epigraphs or dedications or even to which contests I might send the collection in the next couple of months. I just want to be done, finito, fin. I wonder if that means the book is done (i.e. I can’t stand it any more so this is how it will end) or if I’m ready to move on, tackle other things. And I wonder if it means I’m done with my father’s ghost for a while, if I need new air to breathe, new projects in which to immerse myself. Sometimes, it’s just too much to think and write about how much I miss him, day after day, hour after hour. Sometimes, sitting at my desk and reading the comments my friends have so carefully given me, after they have so carefully considered my work, just feels like too much. I read gossip sites instead. I do the LA Times crossword puzzle online. Then I do the sudoku puzzle for kicks.

That doesn’t mean, of course, I’m ready to be done with my father forever. Maybe it just means his ghost and I are ready for a break. A little time away to see other people, let other lives pass between our own. Maybe some people would call this healing or acceptance. I just call it letting my father rest awhile. Hoping he’ll be there when I’m ready to pick him up again.

 

Poet and activist Andrea Scarpino is the west coast Bureau Chief of POTB. You can visit her at www.andreascarpino.com

Press Release:

 

Collection of essays on disability to be published in Decorah
Decorah, Iowa (August 12, 2009) – On August 21, The Spectrum Network will publish From My Perspective: Essays about Disability in Decorah, Iowa. This collection includes writings by a variety of individuals who have disabilities and those who support them, such as parents and human services professionals.
The book marks the thirty-fifth anniversary of The Spectrum Network, a Decorah nonprofit that serves people with disabilities and other obstacles. The organization helps people gain independence in their work and daily lives, through services like job training, supported employment, and life skill-building.
In April, Rachel Faldet, assistant professor of English at Luther College, held a writing workshop with a group of clients, staff members and others connected with The Spectrum Network. Faldet has helped several groups gather stories into collections, including Our Stories of Miscarriage: Healing with Words (Fairview Press 1997). “Stories are a way of thinking about who we are as a community. It’s important to hear people’s voices, even if they do not have experience writing,” she says.

Faldet observes that it is unusual for a writing group to include authors who are not physically able to put words on paper. “I was impressed by how people in this class took to the task of telling their stories with great earnestness and dedication, even if they had to speak aloud to someone who would put their words down on a page.”

Overcoming obstacles, large and small, is a common theme throughout the work. One writer describes her struggle to get married in the face of opposition from her support team. “It felt like they were holding the cards of my life and I wanted to play…They would talk about you like you weren’t even in the room.” Another writer recounts living independently for the first time when he reached middle-age: “That first day, when it was just me alone in the apartment, it was silent. I felt scared and excited at the same time… I could do what I wanted and when I wanted. If I didn’t want to do my dishes that night, I didn’t have to. What a great feeling.”
Several stories come from parents. In one essay, a mother describes the anguish of contemplating her daughter’s reproductive rights. In another, a parent tells how therapeutic horse riding has helped her adult son to thrive, despite having been told as a child that he might someday “be able to water plants.”

The essays also illustrate how everyday assumptions about disability can become barriers to allowing people to fully participate in community. Should we hesitate to ask someone with a disability to volunteer at the church? No, one writer tells us: “This morning made me happy. I am in the circle at church, and they asked me to bring a salad or cake for the salad luncheon.” Another writer, a human services professional, reflects, “It’s amazing how we start to think that we know what people need and what people are going through. What a misconception.”
The Spectrum Network Executive Director Toni Smith says that From My Perspective is one of the most inspiring projects of her seven years with the organization. “To read these stories, you gain a new appreciation for the tenacity of individuals who are leading joyful, productive lives, having once been told they would not. These stories tell us why to try.”   

From My Perspective, edited by Rachel Faldet and Kris Schanilec, will be available for purchase on August 24. Call 563-382-8401, or visit www.thespectrumnetwork.org.

The Spectrum Network is a private, non-profit organization that provides customized employment services and daily living assistance to adults with disabilities, substance abuse, mental illness, and other barriers. Approximately 100 men and women from nine Iowa counties currently benefit from the services of The Spectrum Network.

Contact:

Toni Smith, Executive Director
The Spectrum Network
(563) 382-8401
tsmith@thespectrumnetwork.org