Author: stevekuusisto

I remember the hate mail like it was just yesterday. Like hundreds, perhaps thousands of other bloggers in the dis-a-sphere we at POTB protested the treatment of “Ashley” the “Pillow Angel” in no uncertain terms. (See “Growth Attenuation: Say it Ain’t So”) Today’s post at Inclusion Daily Express revisiting the findings of the Washington Protection and Advocacy System, findings which underscore precisely what disability rights advocates were saying all along, is a stark reminder of how steep the way can still be for people with disabilities.

S.K.     

“Ashley Treatment” Was Illegal, Watchdog Group Says
By Dave Reynolds, Inclusion Daily Express
May 9, 2007
SEATTLE, WASHINGTON–The civil rights of a 6-year-old girl with an intellectual disability were violated when doctors failed to get a court order before performing a hysterectomy on her as part of the “Ashley Treatment”, a disability rights watchdog group announced Tuesday.

In its 38-page report, the Washington Protection and Advocacy System concluded that an ethics committee at Children’s Hospital and Regional Medical Center in Seattle followed bad advice from the attorney representing the parents of “Ashley X”. That attorney said a court did not need to weigh in on the sterilization procedure because the surgery was not intended to keep her from getting pregnant, but was a byproduct of a set of treatments — along with massive doses of estrogen and surgical removal of her breast buds — designed to keep the girl physically small and avoid puberty.

Under federal and Washington state law, a child or adult with a developmental disability cannot be surgically sterilized at the parents’ request until a court has approved the procedure and after the child’s interests have been ‘zealously’ represented by an uninvolved third party, usually a court-appointed guardian ad litem.

By side-stepping a court’s review, Ashley’s 14th Amendment rights to due process were violated, WPAS concluded, along with state sterilization laws. Other anti-discrimination laws might also have been violated because the treatment would not even have been requested if Ashley did not have a disability. WPAS attorneys reasoned that the hormone treatments and mastectomy might have required a court review because they were very intrusive and could not have been reversed.

News of the “growth attenuation” treatment, which was performed on Ashley in 2004, was made public last October in the journal Archives of Pediatrics and Adolescent Medicine. It did not receive much attention until Ashley’s parents published their own website on January 2 of this year, to defend the treatment and to promote the procedure for parents of other “Pillow Children” — those with severe disabilities.

Many disability groups and individual advocates issued public statements expressing outrage, disgust and fear over the treatment, the medical ethics board’s refusal to stop the treatment, and the public’s general acceptance of the idea of that altering the size of a child with disabilities would be good for the child, the family, and society at large. Some called for federal and state investigations to determine whether the treatment was ethical and legal. The WPAS investigation started as a result of complaints from disability rights advocates.

The WPAS report focused on the legal aspects of the Ashley Treatment, but noted that a further ethical debate needs to take place over the rights of people with disabilities, along with more emphasis on supports for people with disabilities, their parents and families.

Curt Decker, executive director of the National Disability Rights Network, of which WPAS is a member, said: “We believe this is not acceptable treatment for a child with disabilities, despite the rationalization of the family,”

While WPAS blamed a series of “systemic” failures, the hospital called it a “communication breakdown”.

In response to the report, Children’s Hospital admitted that the surgery was performed illegally, and agreed to a number of steps to make sure that a child’s due process rights will be respected in the future, including placing a disability rights advocate on its ethics committee.

Douglas Diekema, the Seattle pediatrician that brought Ashley’s case to the ethics committee, told reporters that what is legal may not be the same as what is ethical.

Ashley’s parents defended the treatment performed on their daughter, and added that requiring families in their situation to go through a court review would place “an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s.”

Related:
“Investigative Report Regarding the ‘Ashley Treatment'” (Washington Protection and Advocacy)
http://www.inclusiondaily.com/news/07/red/0509a.htm
“Statement from Children’s Hospital Medical Director, Dr. David Fisher” (Children’s Hospital and Regional Medical Center)
http://www.inclusiondaily.com/news/07/red/0509b.htm
The Ashley Treatment Weblog
http://ashleytreatment.spaces.live.com/
A Disability Community’s Response to Ashley’s Treatment
http://www.katrinadisability.info/ashley.html
A Statement of Solidarity for the Dignity of People With Disabilities: A Reaction to the “Ashley Treatment”
http://pub6.bravenet.com/guestbook/501900445
“Disability Advocates Respond To “Ashley Treatment” Designed To Keep Girl Small” (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/families/ashleyx.htm

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It is hard to make fun of Easter unless you are temperamentally challenged–by this I mean true Easter, the resurrection of Jesus Christ. Forget the Roman and Greek and Egyptian antecedents to the holiday; forget the happy Gnostics with their spring plantings. Let’s be honest, if you plan on coming back from the dead spring is a good time to do it. Jesus knew perfectly well what he was doing.

But let’s say that the commercialization of Easter with its chocolate bunnies is absurd to you–that it was always absurd–that even as a child you saw there was bunk about this. You “knew” though you still ate the candy. So anyway, about a month ago I was in St. Louis where I gave a reading at Merrimec Community College and I had a splendid time talking with students about writing. My host for this occasion was hospitable enough to put me up at her lovely home where her house mate who is a sculptor had artfully arranged the following display on the kitchen table. For those of you who are visually impaired let me simply say that the photograph below shows a stuffed toy rabbit (quite fuzzy) with very long ears. The rabbit has been nailed to a cross by way of its ears–that is, the ears are spread out along the transverse arms of the cross. The Easter Bunny will of course rise again. We will go to the tomb and find an enormous egg where the stone had been. Everything makes sense. Let us proclaim the mysteries of faith!

S.K.

“When you talk with Americans about Americans you’re forced to admit their shit doesn’t stink.”

(Anonymous Helsinki drunk, in Cosmos, circa 1980)

“By what right do we despise the admission of our nation’s mistakes?”

(My own father, circa 1980)

S.K. 

We just received the following group e-mail from Lainey Feingold:

From: Lainey Feingold

Date: Sun, 9 May 2010 22:00:32 -0400

Subject: Court victory for blind movie goers

Dear friends and colleagues:  

I was on vacation when the Ninth Circuit opinion in the Harkins movie theater case came out on April 30, but I have now posted something on my website about this tremendous victory.  The direct link is:  http://lflegal.com/2010/05/harkins-opinion/

The Ninth Circuit opinion allows an Arizona case seeking audio description (for blind and visually impaired movie goers) and captioning (for deaf and hearing impaired theater patrons) to proceed.  

Congratulations to the plaintiffs, the Arizona Attorney General’s Office, the Arizona Center for Disability Law, the amicus parties and their lawyers, and the U.S. Department of Justice.   Great commitment, great result!

Lainey

Lainey Feingold

Law Office of Lainey Feingold

http://lflegal.com/

510.548.5062

LF@LFLegal.com

Twitter: @LFLegal

Lainey Feingold

Law Office of Lainey Feingold

http://lflegal.com/

510.548.5062

LF@LFLegal.com

Twitter: @LFLegal

John Shore’s post over at Huffington “Ten Ways Christians Tend to Fail at Being Christian” offers a sensible approach to Christian critical thinking and is therefore highly worth reading even if you aren’t Christian. Shore, who has been “trying god’s patience since 1958” suggests that Christians need to be more humble, reflective, and “worldly” in the best sense. Surely these are good ideas for anyone, Christian or not.

One thing Christians might do more of is to read poetry. Here is a poem by Lars Gustafsson that I’ll offer as today’s Christian reading:

Eel and Well

In the province of Skane there was a custom:

into their deep black wells they put

small eels from the sea.

And these eels spend their lives

imprisoned in the wells’ deep blackness.

They keep the water crystal-clear and clean.

When sometimes the well-eel

is brought up in the bucket, white, frighteningly big,

blind, coiling in and out

of the riddles in its body, without knowledge,

everyone hurries to sink it back again.

Often I see myself

not just in the well-eel’s place

but as both eel and well.

Imprisoned in myself, and yet this self

is something else: I’m there.

I wash it with my wriggling,

muddy, white-bellied presence in the dark.

–from The Stillness of the World Before Bach: New Selected Poems edited by Christopher Middleton, New Directions Press

S.K.

Back in 1844 George Boole published his book on the laws of thought–a little treatise on algebra if you will. In effect his book conveys the DNA of the modern computer. Every “set” has something in common with the “empty set”.

I remember reading Boole in 1974 at Hobart and William Smith Colleges. I was a sophomore there. I was studying Boole while reading Finnegan’s Wake. The Viet Nam War was still going. Everyone I knew–students and faculty felt a secret anxiety. Something was happening “out there” in the world and we couldn’t describe it. We understood that every set had something in common with the empty set.

Something was coming. Something with pistons awry…

Meanwhile 1 and 0 entered their blazing micro-static relays and Steve Jobs said: “Voila: Je m’appelle Steve Jobs!”

Back in those days if we wanted some irony we picked up a book–any book by Kurt Vonnegut Jr.

Back in those days we genuinely believed that random consciousness stood in opposition to the things we could see. And irony was the ability to say it. (Yes Poindexter, we weren’t very sophisticated in them times.)

So for instance you could see a photograph of a napalmed child in Viet Nam and then listen to The Grateful Dead. And using irony you could tell yourself that your favorite relaxation technique was a kind of politics. Every set has something in common with the empty set.

That digital technology has changed irony is already an old old story. But the empty set goes on in its expansions. If irony is now passe, or if seeing is no longer contextual, then it follows we must recreate it from a position of nostalgia.

This is what Mash Books are about. They represent post-ironic nostalgia for irony in the age of the iPad.

As we enter the age of post-digital technologies I like to think of mash books as a bird that evolves with its cage.

Readers sit inside their whitewashed living rooms and softly enter the canal systems of a far country where Abraham Lincoln tracks vampires.

It’s a little bit Gothic, a little bit Rock & Roll.

Over at the blog Tiffany’s Bookshelf Tiffany says of Jane Slayre, the mash novel that puts Jane Eyre into a vampiric narrative: “This is not your post-twilight, romantic vamp pulp fiction, and it is not your high school English teacher’s beloved Bronte. It is just so much more.”   

The mash book or literary mash up is the smoke from post-ironic gardens. The twigs and stumps of the verities are burning.

The Beatles are re-invading as Zombies. David Russell is set to direct Natalie Portman in the film version of Pride and Prejudice and Zombies.

Human beings like to see the world as small, as a thing that’s possible to survey. We want our signals and observations to fit our landscapes. On the other hand the logic in quantum physics says that matter obstinately refuses to be anything other than probabilities.

Leaping randomly between spectral lines is a nostalgia for irony, but with irony’s skepticism largely disposed of.

Fitful illumination.

Perhaps. But it is what it is.

S.K.

City of infinite shiverings, twilit, un-carapaced, face to face. Human beings lived that way. In the museum of our rights we see how it was done, suspended like circus flyers: carnal; blessed; reaching; reached. Hope and remembrance for the rest. All time is eaten up by thoughts of time. I like good sir to think we live in an age when love is rising. Here in my city, in the gray of early morning I see your faces again, there in the irresolute, agitated dark.

Dear readers: I am restless but not in despair. Yes. I like to sneak artfully through the branches like the blue jay but alas for me I am just a man with an ordinary taut heart that wakens me to this simple morning. I get down on my knees and thank God for a simple morning. There are the resolute punctuation marks of suffering children and of men and women–all viewable from above the earth. You see them in refugee camps, that glib first world term for lawless imprisonments. I get down on my knees and thank God for a simple morning. I weep for my nation’s foreign policies that sustain refugee camps and arm the thieves and war lords of (insert region here). I long to be a step ahead of the premises that American citizenship requires a de facto investment in worldwide and regional sufferings. I want our government to fight for a reduction in arms sales–an international treaty–like ending slavery–arms manufacturing and profiteering are in fact a system of slavery. I want to get down on my knees. I wake up this way. I wake up and want to move faster than the inhuman state–the nation states. This has always been my pet theme. The life of the mind is like the tracks of a bird that’s hard to trace. I’m wriggling in the dawn. I feel like weeping. My country is killing civilians all over the place. My nation is on the wrong wavelength. America follows the smuggler’s paths. I want to kiss the ground, the literal, marled, wet ground. I want the young writers of my nation to give up on so much irony. I want them to stand up between the spectral lines and wave their bloody shirts. I want to say too much. I want to get down on my knees. I want to stand on gallows hill and read a poem. And yes, I need to check myself to see that my favorable darkness is properly wrapped around the stone in my poetry sling. I want to weep. Who would have me as a friend? I imagine those of us who care about human rights; we’re riding on trains that enter the illuminated stations. And the stations are futuristic. When we climb from our trains the directional signs say: “Freedom this way” and the other sign points to a museum of human affairs. I get down on my knees and thank God for a simple morning. I am restless but not in despair.

S.K.  

What is interesting to me? TypePad, the Blogging Platform offers a Quick Compose feature that asks me to share with others "what is interesting to me"–the matter presented like an invitation to make a grocery list. What is as interesting as a grocery list? That the first hot air balloonists thought of themselves as intellectuals; imagined they would experience something of the majesty of God by rising; that they saw the world of humankind as a labyrinthine prison. That is interesting. Measurements in geometry are interesting. The sturbborn wind, knuckles, thumb and forefinger, cathedrals, green frogs–are interesting.

I just received an e-mail from my dear friend Craig Lucas. Craig reports that Harry Weider died on April 29. Harry was struck and killed by a New York taxi. Like all of Harry’s friends I am devastated. While blogs and news stories are quick to say that Harry was “gay, Jewish, a dwarf, an activist” etc., in my world view Harry was simply another universal citizen. Rob Eshman’s blog post is the best summary of Harry’s wild, unflappable, edgy, righteous, funny and loving intelligence. See also deeply loving tributes to Harry at Michael Petrelis’ blog and at Haaretz.com.

I had just gotten to know Harry by way of e-mail. Craig Lucas had introduced us. In recent weeks I’d been thinking of ways to bring Harry to the University of Iowa to talk about anything he desired. You see, in the world of universal human citizenship the life of the mind is like the discord in Stravinsky’s Concerto in D Major–suddenly one hears an old Russian chorale, the universal voices of long sufferings–voices still daring–still risking communities of love and acceptance.

Harry, I hardly knew Ye; yet I did. And I am the luckier for it. Yes we live on this blue planet like fragments of broken glass. Then the poet comes to town. Says, ex nihilo “didn’t you know all despairs are reversible?” 

My own greatest fear is that I will be struck by a taxicab in New York. Nowadays, what with some restored vision in my left eye and the possibility that I will have the same good luck with the other, what with all this, I fear giving up my guide dog–my vision is just above legal blindness when I’m in the doctor’s office, but probably just below it when I’m on the street. 

And well meaning people come up to me and say: “So when the dog retires can I have her?” They really do mean well.

Yet here’s the thing: Harry demonstrated over and over that disability is complex, protean, that it changes multiple times during the course of a single day. That living with disabilities contains multiple social, intellectual, political, and physical risks. Harry also demonstrated daily that you can’t judge a person by appearances. Of course.

In our post-modern, post-industrial, digital age we assume that the body is a text. Harry taught us that you have to look “up” from a text every once in awhile.

Some days I feel like an elderly gentleman in a remote house far out by the sea. None of the locals understands me.

I think Harry knew how that felt. It’s okay to feel a little melancholic in this polysemous and often frightening village.

It is also right to shake your fist at the bank palaces and staircases, at the bureaucratic rhetorics of hesitation.

Harry, I hardly knew Ye. But I knew Ye. You are in my song.

S.K.