stevekuusisto

Essay: Summer Solstice

In the old days at the edge of the Finnish woods my father’s father and in turn, his father

Raked the dry weeds and lit a bonfire but they went about their work so cautiously

One might think they were burdened by superstitions.

& yes they kept a spare coffin in the house, eating off of it, using it for a table.

“In these dark times,” they would say. “In these final days…”

& though my father’s father’s father was a Christian

Though he believed in the life everlasting

Hhe was afraid of willful nature.

& while praying they burned that unused coffin.

& the sun dipped to the dark horizon …

S.K.

I wasn’t myself today and without forethought of any kind I walked into the tall grass and lay down. Add gold and acid & I’d have an engraving: Hermes Trismegistus dreaming; Carl Jung on holiday—who knows what to call it…"This isn’t me," I thought. "What kind of person lies in the uncut grass in America? Isn’t lying down a confessionof sorts?"

& I lay there sloped in the odors of vegetation unable to imagine my confession. What had I to confess? My foolishness perhaps but even the god inside me was tired of that story. Autumn & the crickets singing during the day. Autumn; crickets; the god inside me; tall grass; foolishness without conceit; a simple half hour while my country wages war & about that time I sensed that I have said all the prayers I have ever known.

S.K.

Walking Swiftly with Robert Bly

In those days I had these coke bottle glasses & I could see a pine cone or a Chinese fan

When I raised them straight to my nose & yet I walked as fast as a man can walk

& no surprise: the body was not afraid of zeroes or empty rooms;

It didn’t see the cloud that resembled a mountain

For when our footing is uncertain men and women see nothing at all.

We were walking beside a lake

& Robert said the shadows cast by the pines

Were like the silences of families

But we were moving quickly

In several darknesses—too many

For a human frame—please understand

The body is pure uncertainty

& its shadows are unobserved

Though we make all the world an algorythmn

Lining up the churches and jeweled caskets, the eyes of animals,

Occidental numbers,post mortems of the heart

The body enters the ocean without claim

Without thought— we have been poor always—

Walking swiftly we are the poorest things in nature.

You who love the bitter seeds in bread and poetry…

You who never believe in devils…

You who laugh at the felicities of Russian rhymes that stay in the ear for a lifetime…

No one calls us

But walking swiftly

The house stands among thorns.

"I will come again to this poorest of houses," the body says. "But not this morning."

S.K.

ADA Alive and Kicking

Yesterday the U.S.Senate Passed the ADARestoration Act.

See this article at Civil Rights dot org:

http://www.civilrights.org/library/features/024-senate-adaaa.html

If you are a person with a disability or you’re a friend or family member of a pwd you will be disappointed by some of the compromises that came about during the long struggle to introduce, debate, and pass this legislation. Yet it is undeniably true that the act, which President Bush is expected to sign into law, will reinvigorate civil rights protections for people with disabilities who may experience discriminatory actions by employers or yes, even educators.

If you were channel surfing yesterday you would not have seen any coverage about this remarkable triumph of bi-partisanship.

But there it is.

I for one will be popping a cold bottle of Italian fizzy water.

S.K.

Big Ten Network Supports Project 3000

Logo: Project 3000 Derrek Lee of the Chicago Cubs and Wyc Grousbeck of the Boston Celtics share an uncommon bond. Each has a child with a rare genetic eye disease called Leber’s congenital amaurosis, otherwise known as LCA. Rare as this condition is, these two devoted fathers would probably not be aware of their similar experiences were it not for the efforts of Dr. Edwin Stone and his research team at the University of Iowa’s John and Marcia Carver Nonprofit Genetic Testing Laboratory. In their view, it is Dr. Stone who represents hope for the future of their children, and others like them. It is Dr. Stone’s powerful message that "there is something we can do" that has inspired the Lee and Grousbeck families to combine their talents and their resources to support the research that is currently being done.

The
initiative spearheaded by Derrek Lee and Wyc Grousbeck is known as Project 3000, named as such to reflect the estimated 3000 people in the United States living with LCA. One of the major goals of this ambitious effort is to find, and test, these 3000 people in order to advance the research. Research points to hope in terms of treatment and a possible cure, not only for LCA, but for other inherited eye diseases as well.

An informational video, produced to raise awareness and help spread the word, has been aired on the Big Ten Network. It has also been made available for viewing here.

To Learn More visit:

Derrek Lee’s 1st Touch Foundation
Project 3000: Believe the Unseen

A Question as Autumn Arrives

This is the season of crickets: early autumn and the nights turning cold. We think of them as musicians of small disasters even though this is patronizing and humanly imperial. But children know the truth. The crickets are singing in dark houses with the windows flung open to the night.

The thing about children and crickets is that their hearts have not been hijacked by esoterica. The Gods live inside a child and a cricket without fanfare or holy books. And just so: the gods, children, and crickets are not thinking about the pale ministers or the farmers.

They sing to the astronomy of bodily pain and the unredeemable knowledge of no body at all.

Was it a child or a cricket invented the shakahachi flute?

S.K.

The Chapman Family and Some Thoughts on Our Conditions

I woke in the small hours of the morning and felt the blue planet working in the first light. Felt my heart beating with its Zen obedience. Felt sand in my eyes. Thought about the moment in Huckleberry Finn where Jim tells Huck about what its like to be ridden by a witch all night like a horse. It was 4 a.m..

I turned on my computer and went to the blog of William Peace, one of our best disability rights bloggers in my humble opinion. Over at Bad Cripple I read before dawn about the plight of the Paul and Barbara-Anne Chapman family. Bill Peace has written about their experience of discrimination at the hands of Canadian immigration authorities and I urge you to read what he has to say.

Briefly: the Chapman family has twice been denied entry into Canada because they have a disabled child.

Remember that it was before dawn when I read about this matter. I recall that I was looking for something like confirmation. That is, I’d hoped that by reading Bill’s blog I might find some pre-sunrise lift. And that’s exactly what I found though not in the way I’d imagined.

People with disabilities are routinely denied rights of access; rights of inclusion to be more precise about the matter.

Just last evening I was talking with a friend who knows a doctor who is trying to build an eye clinic in Tanzania because (as I currently understand the matter) women with cataracts are perceived by some to be "possessed" or to be witches as it were, and apparently, so I’m told, its considered to be an appropriate measure to murder these blind women.

I sat at my computer in the pre-dawn roseate light and I found myself grieving for the human race.

Yes, like a Jim in Twain’s novel, we are ridden by the forces of enslavement. Oh I do not say this lightly.

Canada’s argument for keeping the Chapman’s out of the country is that their daughter might well require medical and social resources.

If you parse that argument to its core, what it means is that they don’t accept the Chapman’s daughter who has a disabling condition to be eligible for citizenship.

Ergo: she is the equivalent of the enslaved person who is at best a kind of property.

The "broken body" lacks true economic utility. It should be kept in a warehouse.

I’m sure that Canadian immigration officials would recognize Adolf Hitler’s assertion that the disabled are just "useless eaters."

I was fully awake after reading Blind Cripple. By God I was talking to myself before the sun was up.

S.K.

Your Blind Reporter

Once, in

London

I found myself at Westminster Abbey and standing by the gates as the Queen was going in.

As I walked through the crowd people stepped out of my way because of my white cane—and so of course I kept walking toward the sound of bells.

Here is the truth of the matter: the queen of

England

has flat feet. I heard how she walks.

The bells of the abbey and the stubborn feet of royalty make a strange syncopation I tell you.

The queen’s feet were like wet bread and the bells made a music of stars laughing because stars over London can laugh sometimes.

S.K.

Hanging with Dignity

Alright, I’m in the woods and my "dial-up" connection is tenuous at best. "What," you might ask, "Have I been doing?" In the spirit of full disclosure I have been kissing my rock and working on an odd little book for the AARP–a "how to have fun" kind of book that is designed to promote the art of conversation. Asking me to write a book about conversation is a silly thing since I’m able to talk to a pine stump with mutualism intact. I am sufficiently self-delusional enough to believe the stump is correspondingly gratified. One lives by the myths that get the job done. Last night I talked to a water spider down on the dock. He was about the size of a hockey puck and he had variegated and complex gray hairs. How do I know that? Oh don’t ask.

Just FYI the water spider doesn’t believe that the movie "Tropic Thunder" is worth two flies since it demeans consciousness in all its forms. My spider also said that he once went on a vacation with Robert Downey Jr. and although he’s sworn to secrecy about the matter he can report that Mr. Downey can really hang from a web. Oh don’t ask.

I don’t like the pejoratibve use of the "r" word any more than I like the ugly employment of other slurs and I freely admit that in a free society one must be allowed to create drivel since this is the admission price for free expression. See Plato. But I don’t have to like it. And in case anybody wonders if I’ve changed my tune over the years all I can say is that when I was a college sophomore and first saw Mel Brooks’ "Blazing Saddles" I was pretty darned uncomfortable with his use of the "n" word throughout that flick–even as I understood that satirical comedy aims to make a democratic hash out of every form of imbecility.

I don’t like the "n" word and I don’t like the "r" word though I will defend the right of imbeciles to say what they want. The larger trouble is that Hollywood has such a miserable track record when it comes to depicting people with disabilities and so the further imposition of demeaning language into an already impoverished cultural misapprehension of cognitive disabilities is unfortunate.

If you protest Dreamworks use of the "r" word you will look thin skinned and humorless. If you don’t protest it you are in essence lying down under a heavy blanket of cultural abjection–a matter made all the worse by the erosion nation wide of public school programs for kids with learning disabilities.

So while I have a spider to talk to, and a rock, and even a beloved yellow Labrador for Heaven’s sake, I’m not a "happy camper" when I think of Mr. Downey Jr. or the pettifogging cold blooded roaylty at Dreamworks.

I say this as a person who in public school was freely called "retarded" because I couldn’t see.

Once, about twenty five years ago, and for no obvious reason, I was invited to dinner with a famous Irish classical musician. We somehow got onto the topic of "the Kennedys" and this world renowned performer said that he’d once shaken the hand of one of the Kennedy brothers–though I don’t remember now which one–and he said that he felt a "large, soft, pillow-y hand that had never pulled a potato!"

Well that’s esentially what I think of Robert Downey Jr. Save that I’m thinking of his head. There’s a head that’s never been troubled by Donizetti’s "Requiem" or Boolian algebra, or much else that stands beyond the vodka shelf over at aisle B.

As for Dreamworks, am I the only one who thinks their pixelated dopey cloying sub-Cartesian two dimensional cartoon allegories for grownups are the epitaphs for critical thinking? Okay. I do sound like Neil Postman. Yes. And I never liked Disney either. I do however like Kate Smith. I love it when she sings "the oceans flecked with foam" and I guess I better stop there.

S.K.

Down Syndrome Association of Los Angeles Update

Tropic Thunder: What you can do now.
August 12, 2008

Dear Family and Friends of the DSALA:

There has been a tremendous outpour of support for the DSALA’s efforts in regards to concerns over the DreamWorks film "Tropic Thunder" and the affects the language in the film will have now, and in the future, on individuals with Down syndrome and other intellectual and developmental disabilities.

Twenty DSALA members joined a group of 200 in a protest Monday night inWestwood, CA across the street from the Gala Premiere of the film. We were joined by Special Olympics, The Arc, TASH and more.
· Thank you to all who came out.
· Thank you for the volunteer support in our office during this time.

Many of you who were not able to attend the protest or assist in the office have asked what else you can do. Here you go!

Go to a new website set up by Special Olympics and sign up on their site to pledge your support to eliminate the demeaning use of the "r-word." The more who sign up the better, this site will assist us in putting pressure on decision makers in the media and elsewhere. Please forward to all you friends and family and have them support the cause as well.

Take advantage of The Arc website addressing "Tropic Thunder." You can catch up on all the articles and download their chapter "Action Kit" if you are planning a protest event of your own. You can also check their list of upcoming protests to join. Their calendar is being updated by the minute so keep checking back.

LINKS:

Disability News: Boycott Expected, Roundup of "Tropic Thunder" media protest covered, Groups Weigh Boycott of "Tropic Thunder"