Things that crack me up, #22

I know this is a serious search engine query (Yahoo this time instead of Google), and it's such a general question that I have no advice, but the specific wording of it cracks me up:

"What steps can I take if I'm Disabled in a WheelChair in 2007"?

Accessibility here, just somewhere else

Flickr credits: Lee Bennett, ekai, and Isgphoto, respectively.

Visual descriptions of the three photos above: 1) A simple sign that reads "Wheelchair Ramp Available, Inquire Within," 2) A simple sign reading "Accessible Restrooms On The Second Level," and 3) A door with a sign at door handle level reading "Disabled WC" and a piece of paper posted about a foot above reading "POLITE NOTICE: This toilet is out of order. Please use the facilities upstairs. Sorry for any inconvenience caused."

More writing on Ashley X

As people incorporate the Ashley Treatment into their thinking about disability or just spend a little time with the ethics of it all, more continues to be written about the case and the precedent it creates:

Patricia Williams for The Nation, posted at AlterNet:

This was also very wrong as a matter of ethics and public policy. There seems to be, in the national debate about this case, a popular consensus that the parents were well motivated, so who are the rest of us to judge? That sentiment is expressed loftily, as in Peter Singer's New York Times op-ed ("she is precious not so much for what she is, but because her parents and siblings love her and care about her"), and crudely, as in an anonymous online posting to the disability rights organization FRIDA ("I think your group is a pain in the neck ... if and when something happens to the caregiver, who will take care of the disabled person ... your group or the state who really does not give a hoot.")

Dave Reynolds at Inclusion Daily Express asks the question "Should 'Ashley X' be at the Center of Community Living Debate?":

Frankly, however, I haven't been able to make that link between community supports and Ashley's parents. I don't think one has much to do with the other.

For one thing, I found nothing in statements by Ashley's parents to suggest that an increase in community supports would have kept them from surgically changing their daughter to fit what they wanted her to be, an eternal "Pillow Angel". To the contrary, they said that they had tried in-home services but were not happy with them. Not that their satisfaction with the services would have mattered; even if they had the best in-home supports for Ashley, they still would have chosen their radical procedure.

"We would never turn the care of Ashley over to strangers even if she had grown tall and heavy," they wrote.

And because we knew this would never be just about Ashley X, Today's Zaman, a Turkish news site reports:

Two families with children suffering from cerebral palsy voiced support on Friday for another family’s plea to stunt the growth of their son, 13-year-old Umut Mert, who suffers from the same disorder. Füsun Evren, Umut Mert’s mother, earlier this week announced she was looking for a doctor who would stunt her son’s growth, in an operation now referred to as “Ashley’s treatment,” so named after a 9-year-old Seattle girl whose parents opted to stunt her growth with high-dose estrogen.

.... Professor Saim Yeprem from the Religious Affairs Directorate said that Ashley’s treatment was unacceptable. Yeprem said: “Umut Mert would be castrated if he received Ashley’s treatment. Castration is opposed by all religions, not only Islam.”

Dr. Güler Saygun from the Turkish Disabled Persons Administration said that applying such a treatment would require approval from the Ministry of Health’s Ethics Council. The head of the Turkish Association for the Disabled, Zülfikar Akar, said: “We don’t think it’s the right choice, but the mother’s situation is indeed difficult. These situations happen because care centers don’t offer long-term care for people with disabilities.”

Big badass slumgullion #33

Blog posts and news reports all mixed together... slumgullion-like:

The Gray Panthers of San Fransisco blogs about managed care and assisted-suicide:

...The California Association of Physicians Groups, an organization that represents Northern and Southern California Permanente Groups and lobbies for “groups practicing in the managed care model” (http://www.CAPG.org), have recently come out with letters to the Legislature and press statements strongly advocating for assisted suicide in California.

Will assisted suicide proponents finally admit that a quick hundred dollar lethal prescription is vastly cheaper than offering extended care over the long haul?

Diebold sues Massachusetts for selecting a competitors voting machines over theirs. Judge denies Diebold's request to block bid. --Via Sara

Merge of schools for blind and deaf students opposed in Oregon. Also in Ohio. I've been following the controversy about this on a listserv, but Stephen Kuusisto of Planet of the Blind weighs in here.

In the NYT: Trafficker of Healer? And Who's the Victim? -- On pain treatment

From NPR, artist Lisa Bufano finds creative inspiration for dance in being a double amputee. Video of some dance segments also available at the NPR link. Visual description of photo at left by Gehard Aba: Caption from NPR "This 2005 piece, Fancy, was commissioned by the University of Linz. In it, Bufano wears stilts fashioned from red, Queen Anne-style table legs."

Also from NPR, the Healing Waters Project, which provides fishing as a therapy for wounded war vets.

At Garrison Keillor's The Writer's Almanac (I know, but the poem he presents is somebody else's, not by his bigoted self) -- "How to Tell If You're a Participant or a Staff (A Handy Guide for Day Programs)" by David Moreau

Diary of a Goldfish on "As no questions, hear no lies" -- Goldfish weighs in on strangers' questions about impairments.

Bioethicist Arthur Caplan and Michael A. Devita (whom I don't know anything about) write about a transplant surgeon being investigated for "hasten[ing] the death of a 26-year-old patient in order to harvest his organs more quickly to ensure they would be transplantable."

On how the relay phone service for the deaf is used by con artists and the people hired to do the relay cannot legally interfere:

Operators vary in their estimates of scamming prevalence, but most agree that con artists chew up roughly a third to half of their workload, at times even more. Because of confidentiality rules set down by the FCC, relay companies say they can't monitor or estimate the number of abuse calls.

"If we did just legit calls, our office would be closed. The managers tell me, 'if it weren't for those calls, you wouldn't have a paycheck,' " says one operator in New Castle, Pa., who wished to remain anonymous for fear of losing her job. She has worked at an AT&T relay center for more than a decade and is putting her children through college on her wages.

At TomPaine.com, "Cutting Native People's Health Care":

American Indians have access to federally-paid health care based on hundreds of treaties the United States signed with Indian nations, under the accepted federal practice of more than 100 years and as a requirement of the trust responsibility the U.S. owes the Indian nations to care for their welfare. Indians have not, however, received their fair share of federal health care, especially in light of this heightened duty. In fact, a July 18, 2003 study by the U.S. Commission on Civil Rights entitled “A Quiet Crisis” found that

... the federal government’s rate of spending on health care for Native Americans is 50 percent less than for prisoners or Medicaid recipients, and 60 percent less than is spent annually on health care for the average American.

Clearly, the United States is not fulfilling its treaty and trustee responsibility to provide health care to American Indian people.

From the NYT: "Can You Live With the Voices in Your Head?" -- On auditory hallucinations

From The New York Review of Books: "A Track All His Own" -- On "outsider" artist Martín Ramírez. The image just above, created in 1954, is a drawing by the artist of a horse and rider in profile, with both the horse and some lines drawn around them in box-like progression to create an illusion of depth in shades of purple. The rider seems to be wearing chainmail and I find the drawing reminiscent of ancient Greek drawings on pottery and murals. The horse has one front leg kicked up high. More on the artist and his history as a schizophrenic and immigrant from Mexico here and here.

Simi Linton at Disability Culture Watch offers a heads-up that next week's Law & Order: Criminal Intent on NBC Tuesday evening will feature some Deaf actors:

I know that they hired many Deaf actors and that their process (of development, casting and production) was extraordinary.

From The Stranger, an anonymous column on the Iraq war and disability fetishism:

And thanks to George W. Bush—and Donald Rumsfeld and Dick Cheney and Condoleezza Rice and corrupt Republicans and ineffectual Democrats—there are going to be a lot more amputees around for me to see as sexual beings. During the Vietnam War, two American soldiers were wounded for every fatality. Now, thanks to advances in body armor and battlefield medicine, 16 U.S. soldiers are wounded for every fatality. That means fewer depressing military funerals and more sexy disabled vets, more Bryan Andersons and Marissa Strocks.

From the Minneapolis-St. Paul Star Tribune, and article about local Muslims trying to balance culture and faith. Among several other conflicts, some devout Muslim taxi drivers refuse to transport people with service dogs:

Airport commissioners have expressed concern about cabbies refusing to pick up fares because of Islamic prohibitions against carrying alcohol. They also worry that Islamic rules about dogs might prompt drivers to decline rides when 300 visitors with guide dogs attend the American Council of the Blind convention in Minneapolis this summer.

Abdinoor Ahmed Dolal, a Muslim cab driver from Kenya, was stunned by the commissioners' concerns. The Qur'an places high value on assisting the disabled, he said. So Dolal says Muslim cabbies have offered to give blind conventioneers free rides to Minneapolis, forgoing the $30 fares as a sign of good will.

"The issues we have are so simple and have nothing to do with extremism or fanaticism," Dolal said. "We are Muslims and we are Minnesotans and if we sit down and listen to each other, we can work things out."

The cover story of the latest Weekly Standard: "Identity Politics Gone Wild: The Deaf Culture Wars at Gallaudet University" -- The tone of this conservative piece seems partly to be that taxpayers don't need to pay for this school, but it's also very critical of Deaf culture as an identity.

Texas guidelines for interpreters for the deaf

This 59-step guide on how to provide interpretaton for deaf defendants in the Texas court system came across on a listserv I observe.

The full diagram viewable at this .pdf file. Visual description of the full chart at the link is difficult without spending an hour or two writing out the complexity of this huge flow chart. The image below shows only about a dozen steps, from a green circle that reads "1. Contact between person and court." with arrow to a yellow shape that reads "2. Is person arrested and taken to judge acting as a magistrate?" If the answer is yes, an arrow leads to number three, if no, an arrow leads to number 12. In several places along the process, the question is whether or not the judge learns the person is deaf, hard of hearing, or doesn't speak English. An answer of "no" at these points presumes the person can hear or understand English.

Molski and the Ninth Circuit

I've written about Jarek Molski before. He's the paraplegic Californian who has sued hundreds of businesses for Title III ADA violations (public accommodations access). Under the California Unruh Act, which is a state civil rights law, he has also sued for damages -- something the ADA won't allow but that defendants like Clint Eastwood have in the past claimed of the ADA.

Molski is known as a serial litigant, and last week the Ninth Circuit reversed Molski v. M.J. Cable, Inc. in his favor. Sam Bagenstos of Disability Law blog was cited in the opinion and describes the case and outcome:

The case the court decided today, Molski v. M.J. Cable, Inc., involved Molski's suit under the ADA and California's Unruh Civil Rights Act against a restaurant in Woodland Hills. The evidence at trial made clear that the restaurant was inaccessible in violation of Title III of the ADA, but the jury found no violation. Rejecting a motion for a new trial, the district judge concluded that the jury could have properly found that Molski was not an "individual" entitled to protection under the ADA but instead was a business (who makes money bringing accessibility suits).

In today's opinion by Judge Ferguson, the Ninth Circuit reversed. The court concluded that the evidence compelled a finding that the restaurant violated the ADA. As for the notion that Molski wasn't an "individual," the court found no basis in the statute for that reading.

The opinion, available as .pdf file here, is interesting reading for a number of reasons.

First, it rejects the defendant's claim that Molski is a "business" and not an "individual" with standing under the ADA because of his history of ADA litigation and the money he has been awarded through the damages provided by the Unruh Act. Not only that, the opinion interprets the ADA as not requiring a disabled individual to be an actual client or customer to have standing under the ADA's Title III since choice among businesses, whether a person uses a business or not, is part of the law's intent.

This is an important point because it means, for one thing, that an individual with future hopes of using a business has legal recourse to work toward that day. Imagine, for example, not physically being able to enter and become a customer, but being denied standing because of that lack of access. Or imagine some large event like a family wedding or political convention with an upcoming date when disabled people want to be present. The Ninth Circuit's opinion seems to account for those sort of situations.

Second, there's some gratifying crip awareness to the opinion illustrated particularly in the eighth footnote, which notes the ableism of the defendant's argument:

The defendant’s analogy that “[Molski] was no more a customer at [Cable’s] on that day than he would be had he been sitting at the counter waiting for the restaurant’s cashier to turn his or her back so [Molski] could steal the money from the cash register” is simply wrong, not to mention puzzlingly insensitive in its imagery, given that Molski is confined to a wheelchair.

I can forgive the "confined to a wheelchair" perspective given there's recognition that the defendant in court refused to really assess or give credibility to what the plaintiff's accessibility needs might actually be.

The third thing that interests me is the opinion's description of the inaccessibility Molski experienced at the defendant's restaurant. Remember, Molski has been vilified for being a "vexatious litigant" and the ADA attacked routinely in the media because of serial litigants like him. Here's the description:

Upon entering the restroom, Molski noticed numerous architectural barriers to his accessing the facilities. The door pressure on the bathroom door was too heavy, and the door lacked a handicap accessible sign. Inside, the stall doors could not close with Molski’s wheelchair in the stall. The stall lacked grab bars on both the rear wall and side wall, which prevented Molski from maneuvering from his wheelchair to the toilet. The toilet seat cover dispenser was unreachable. The pipes underneath the sink were not insulated, and therefore, according to Molski, posed a special risk to those without feeling in their legs, as hot pipes could burn them without their realization. The sink also lacked levered hardware, a type of fixture that is easily moveable without strong grip strength. Molski was unable to reach at least one of the paper towel dispensers. Molski testified that the hygienic violations were especially important in his case because, due to his chest-down paralysis, he uses a catheter and a urine bag that must be emptied frequently. He explained that failure to empty the urine bag can cause autonomic dysreflexia, a condition that can result in whole body spasms and even cardiac arrest. Handling the bag with unwashed hands can also lead to bladder infections.

With the exceptions that I don't have any urine bag to empty and rarely even see a toilet cover dispenser anywhere, this description describes just about every inaccessible restroom I have ever been in -- and found I literally could not use. I want to go through it line-by-line.

The heavy door. Most restroom doors push inward, which means that a heavy door that requires one to pull toward them to open and exit the room is almost impossible for someone on wheels or on crutches, particularly given the cramped architecture of most restroom entrances. Yes. I have been trapped in public restrooms with heavy doors, unable to exit and unsure if anybody would find me there for hours.

The stall door would not close with Molski and his chair inside it. For many women I know, this is a security issue as well as a matter of equal access. Besides, usually leaving the door open while transferring and peeing means that you face the public mirror and everyone who enters and leaves the restroom (and sometimes those in the hall just outside) cannot help but look at you while you use the toilet.

The stall lacked grab bars. This is the main problem that would make this restroom completely unusable for me. This is the reason why, hundreds of times, I have left a business I have already spent money at to go look desperately for somewhere else to pee.

The exposed pipes under the sink. Insulation of exposed pipes prevents legs from being burned by hot water. Since I haven't used a manual much in the past decade and my scooter pulls alongside rather than up and underneath the sink, this isn't a special problem for me now, but it used to be an issue of serious safety when I did.

The sink lacked lever hardware. This makes a sink completely unusable for many of us.

No towel dispenser was reachable. This is especially a problem where sinks are part of vanity-type counters because those counters are almost always covered with water from previous sloppy users. If I can't reach the towels, I can't use the sink from my seated position without soaking my arms and the front of my top with someone else's used water. This is gross and unsanitary and requires me to choose between washing my own hands or keeping my top clean and dry.

The defendant didn't dispute any of these violations Molski listed. In fact, Anthony Dalkas, the vice president of the company owning the restaurant, testified that they hadn't addressed these access issues because they hadn't been required to (italics mine):

In his testimony, Dalkas acknowledged that the company had not attempted to identify barriers to the disabled. He admitted that Cable’s had not made the renovations because “[w]e weren’t compelled to do it.” Dalkas testified that Cable’s could afford each of the repairs but stated, “once you start down that path[,] you’re opening a can of worms that will cost a lot of money.”

I stand by what I said two years ago about ADA compliance and serial litigants like Molski:

...15 years on the books hasn't been enough to encourage thousands upon thousands of businesses nationwide to install even simple ramps. Like any law, the ADA and other disability nondiscrimination statutes can surely be abused, but I have a difficult time finding sympathy for inaccessible businesses I could never patronize that gripe about complying with a law passed in 1990.... Like other mobility-impaired individuals, when I consider going somewhere new -- when friends or family discuss a social outing with me -- the first consideration we must have is whether or not the place we wish to go is accessible. If it complies with the law. As often as not, we must alter our plans. If I decided to sue every business I came across that was truly violating the law just by failing to give me entrance into their front door (never mind restroom accessibility, which is equally important, really), I would not have to exert myself to become a serial plaintiff too. Noncompliance is everywhere.

Things that crack me up, #21

It's just so mysterious.

Restroom signage somewhere in Orleans, France.















From Flickr by bananeman

Visual description: It's a simple drawing of a woman in a manual wheelchair at right and a washroom sink at left. There's a giant green arrow leading from the sink and pointing to the woman. I suppose this is somehow meant to indicate the sink is accessible, but there are no accompanying words, and really, it looks like you're supposed to douse the woman with water or pry the fixture loose and whack her with it. Or something.

Poetry Monday: Their Sudden Tongues

Tulips
by Sylvia Plath

The tulips are too excitable, it is winter here.
Look how white everything is, how quiet, how snowed-in
I am learning peacefulness, lying by myself quietly
As the light lies on these white walls, this bed, these hands.
I am nobody; I have nothing to do with explosions.
I have given my name and my day-clothes up to the nurses
And my history to the anaesthetist and my body to surgeons.

They have propped my head between the pillow and the sheet-cuff
Like an eye between two white lids that will not shut.
Stupid pupil, it has to take everything in.
The nurses pass and pass, they are no trouble,
They pass the way gulls pass inland in their white caps,
Doing things with their hands, one just the same as another,
So it is impossible to tell how many there are.

My body is a pebble to them, they tend it as water
Tends to the pebbles it must run over, smoothing them gently.
They bring me numbness in their bright needles, they bring me sleep.
Now I have lost myself I am sick of baggage ——
My patent leather overnight case like a black pillbox,
My husband and child smiling out of the family photo;
Their smiles catch onto my skin, little smiling hooks.

I have let things slip, a thirty-year-old cargo boat
Stubbornly hanging on to my name and address.
They have swabbed me clear of my loving associations.
Scared and bare on the green plastic-pillowed trolley
I watched my teaset, my bureaus of linen, my books
Sink out of sight, and the water went over my head.
I am a nun now, I have never been so pure.

I didn't want any flowers, I only wanted
To lie with my hands turned up and be utterly empty.
How free it is, you have no idea how free ——
The peacefulness is so big it dazes you,
And it asks nothing, a name tag, a few trinkets.
It is what the dead close on, finally; I imagine them
Shutting their mouths on it, like a Communion tablet.

The tulips are too red in the first place, they hurt me.
Even through the gift paper I could hear them breathe
Lightly, through their white swaddlings, like an awful baby.
Their redness talks to my wound, it corresponds.
They are subtle: they seem to float, though they weigh me down,
Upsetting me with their sudden tongues and their colour,
A dozen red lead sinkers round my neck.

Nobody watched me before, now I am watched.
The tulips turn to me, and the window behind me
Where once a day the light slowly widens and slowly thins,
And I see myself, flat, ridiculous, a cut-paper shadow
Between the eye of the sun and the eyes of the tulips,
And I have no face, I have wanted to efface myself.
The vivid tulips eat my oxygen.

Before they came the air was calm enough,
Coming and going, breath by breath, without any fuss.
Then the tulips filled it up like a loud noise.
Now the air snags and eddies round them the way a river
Snags and eddies round a sunken rust-red engine.
They concentrate my attention, that was happy
Playing and resting without committing itself.

The walls, also, seem to be warming themselves.
The tulips should be behind bars like dangerous animals;
They are opening like the mouth of some great African cat,
And I am aware of my heart: it opens and closes
Its bowl of red blooms out of sheer love of me.
The water I taste is warm and salty, like the sea,
And comes from a country far away as health.

Slumgullion #32

Some bloggy goodness:

Funky Mango writes about the "One Million for Disability" campaign across the European Union. There's a petition too, aimed at collecting at least one million citizens’ signatures because, as stated in the draft European Union Constitutional Treaty, the EU must respond to a call from a million or more citizens demanding action.

A review from the archives of Autism Diva on Mozart and the Whale. I recently saw the movie about a romance between two people with Asperger's, and as I wrote elsewhere:

One of the things that struck me is that it is a film about people with Asperger's and it's not mediated by someone without autism. You know, there's no Tom Cruise to Dustin Hoffman's Rainman. There's no nondisabled character within the story interpreting or analyzing the main characters. I thought that was important and refreshing.

Mark Siegel at The 19th Floor writes in "Its Capital is Cripopolis" about a new study that shows disabled people hold the same prejudices about other disabled folks as the nondisabled do. The study itself is interesting too.

Ricky Taylor at RidorLIVE.com covers the radio show where comedian Lisa Lampanelli ridiculed Deaf people. Yep, on radio, where they couldn't immediately respond:

Lisa Lampanelli: I was always [wondering] if God would maybe think my act was awful and make me deaf so I cant do comedy no more, ’cause that’s why people are deaf; ’cause god hates them.

Male DJ: Now, listen, Lisa.

LL: God hates deaf people, what is wrong with you?

Male DJ: There are gonna be a lot of deaf people there.

LL: Oh, I hope so.

Female DJ: Well there will be. There’s a college within RIT [Rochester Institute of Technology] that’s specifically for deaf students.

LL: Don’t you think deaf students, could be maybe just retarded, and they’re trying to sneak by saying they are deaf?

Male DJ: Lighten up a little bit.

Liberal Catnip on "The Politics of Powerlessness":

It seems that unless you have a large, visible wound or a tumour you can flash on an x-ray, they simply cannot accept that you might actually suffer from pain and other equally annoying symptoms every day. And, even if we did have those things to show them, they seem to always come up with a story - either theirs (which is not similar) or someone else's (like Lance Armstrong's amazing feats, for examples) as proof that you should just get over it, rise up and live a normal life. You're either a loser or a hero. There is no middle ground. Oh, and the fact that you can write a few words on a blog is apparently proof of your power to have a career in journalism or professional writing. (Little do people know about the agony that intermingles those blog posts).

They're wrong.

The effect that sort of attitude has is the infliction of oppression. That's the broader topic here - that there will always be those with more power who use it to demean and attempt to control others.

Liz at The Trouble with Spikol on "Intent to Kill?" about mental illness, intent to kill, and an insurance company refusing to pay on a murdered woman's policy.

Charles Dawson at The Meanderings of a Politically Incorrect Crip writes "Sitting on the horns of a dilemma is painful and not only if you have piles" about a disabled woman in the UK who won a court case against a personal care company that refused to lift her in and out of her wheelchair.

Katya at Broken Clay often travels for business and always has accessibility adventures to share.

Red Robin and Armadillos at the Gimp Compound

It's warm today, and while the morning began with miserable fog that didn't bother me at all because I slept through its evil opaqueness, the rest of the day's weather has been slowly less dreary. There's still patches of snow a few inches deep in sheltered spots around the neighborhood, and, I imagine, gigantimous piles yet in local parking lots that I haven't visited lately.

I've been observing the flowers and birds.

There's been a robin in the backyard deciding how much of this neighborhood will belong to him. Yes, the first robin of spring. Or maybe he's pondering the embarrassing lack of privacy of last year's nest, on the light fixture next to the back garage door, unfortunately placed so we humans could all gather in the bathroom and gawk out the window at their precariously perched abode and its contents anytime we chose. We saw the nest building, some of the domestic negotiations resulting in three perfect blue eggs, the babies within hours of hatching, and the sibling rivalry just minutes before their first flights.

And I'm missing my blind junco bird friend who has not appeared at the sunflower seed feeder at all this past week. He was a loner, a bit unkempt, and his left eye had been tormented terribly by disease or injury. It was bald and featherless all around the little unseeing eye, which he kept toward the kitchen window so the other could see the world as he ate. He seemed perfectly competent in flight, ending up precisely where he aimed to go. So I'm hoping he decided to go elsewhere as the weather has warmed. I hope he'll be back here next year.

A lot of birds have little impairments if you take the time to observe. There's a grackle with a club foot, and another with some hip issues that give him a funny gait. Maybe they were injured in the vicious scraps they get into fighting over food. In any case, from what I can see they seem to manage well enough.

On flowers. Earlier this week I saw the orchid exhibition at the Minnesota Landscape Arboretum. I find orchids fascinating and particularly enjoy the varieties that have little arms outspread (like in this photo just above) because they're showy, but when the flowers get old the arms sag despondently. It's sort of human and sweet.

And then there are the amaryllises, or as my finely-bred family like to call them, the "armadillos." These are magnificent flowers that you can keep in a dark closet for most of the year, bring out and water in late winter, and watch them send up enormous stalks topped by blooms the size of dinner plates. Exhausted afterwards, they like to sit in the closet again. I had one on my windowsill at the rehab hospital last spring and recall in particular how one nurse's assistant who had just helped me onto the commode insisted on standing there next to me admiring the flower while I thought mean thoughts about her in hopes of driving her away.

We have five or six armadillos. I don't know why so many except that when you keep things in your closet, they sometimes tend to multiply.

(Visual description of three photos: The first is of a Phalaenopsis orchid, a bough of blooms in white petals with pink lines radiating from the center out toward the edges. The second photo is of a bough or orchid blossoms that have the nose and arms like the Lady Slipper orchid but bloom many at once on a branch -- the arms of the flower sag after the bloom ages a bit. The third photo is of two "armadillos" with big sturdy stalks and giant buds about to open.)

Montes de Oca

I had several fantastic social studies and history teachers when I was in high school in suburban Chicago, and one of them arranged a fieldtrip into the city one day to hear from teens displaced from war-torn countries. Because of this I read The Little School by Alicia Partnoy when it came out in 1986. It's about the disappeared of Argentina in the late 1970s, those kidnapped and tortured by the violent military regime, most of them never to be heard from again.

Until a notice of this upcoming event at UC Berkeley, I was unaware that the mentally disabled were special targets of this government violence too. Here's the info for the event:

The Ghosts of Montes de Oca: Naked Life, Torture and the Medically Disappeared

Lecture on April 2, 2007 at 4-5:30 p.m.
Doe (Main) Library, Morrison Library

Speaker/Performer: Nancy Scheper-Hughes, UC Berkeley
Sponsor: Latin American Studies, Center for

Between 1976 and 1991, 1400 patients at Montes de Oca, Argentina’s national mental asylum for the profoundly “mentally deficient,” disappeared. Another 1350 died, many inexplicably. Cecilia Giubileo, a young psychiatrist who planned to expose the institutional abuses related to the disappearances and deaths, was among the disappeared. Nancy Scheper-Hughes will discuss the asylum’s recent history and address the question of how medical personnel entrusted with the care of the most vulnerable patients could justify a regime of malignant abuse in one of the most psychiatrically sophisticated countries in the world.

Nancy Scheper-Hughes is Professor of Anthropology at UC Berkeley. She is best known for her award-winning books Saints, Scholars and Schizophrenics: Mental Illness in Rural Ireland and Death without Weeping: The Violence of Everyday Life in Brazil.

Can a deaf black lesbian charged with murder get a fair trial?

Does your answer change if you learn the trial is in South Dakota? How about if she's up for the death penalty?

From the March 6 article in the Argus Leader of South Dakota:

[Daphne] Wright, 43, was indicted in February 2006 on kidnapping and first-degree murder counts in the disappearance of 42-year-old Darlene Vander-Giesen of Rock Valley, Iowa.

Vander-Giesen's body was dismembered, and searchers spent days at a landfill west of Sioux Falls searching for her body parts. Some human remains also were found in a ditch in Minnesota....

Wright's minority status as deaf, black and homosexual have been considerations in pretrial motions and have brought national attention to the case.

Ricky D. Taylor, a deaf Washington, D.C., blogger who runs RidorLIVE.com, said by e-mail that he's received several e-mails about Wright's case. He said it's of particular interest on the East Coast, where Wright used to live.

Taylor said he's interested in the makeup of the jurors and would like to see a deaf person among them.

"As much as the crimes are heinous to us all, I am concerned about the jury selection. For one, Daphne is (a) woman, lesbian, deaf and African-American. Will she be fairly judged by her peers in the state of South Dakota? In my opinion, I doubt that," he wrote.

Courtroom discussion over the methods used to make sure Wright has adequate interpretation of court events has already been extensive:

Wright's deafness has necessitated as many as five American Sign Language interpreters to be in court at a time.

The weeks leading up to Monday's start of jury selection have featured lengthy pretrial testimony and argument about what else should happen to guarantee Wright a fair trial.

[Judge Brad] Zell already had granted a defense motion that in-court translation be videotaped and reaffirmed it Monday after hearing new arguments. The defense wants the recording to make sure what is being signed to Wright is the same as what witnesses are saying.

[Minnehaha County State's Attorney Dave] Nelson argued in court Monday that other steps the court has already taken will ensure a fair trial and that the video would draw out the appeals process if Wright is convicted.

"I don't think the state or county should have to bear this really remarkable expense," he said, assigning an $80,000 price tag to the argument.

Assistant public defender Traci Smith insisted it's crucial that the court record is accurate.

She noted that the chosen company, Midwest Litigation Services, would charge the county $60 per hour, which for a 30-day trial at eight hours per day is less than $15,000.

From ABCNews coverage:

Prosecutors say Wright got caught up in a whirlwind of lesbian drama which drove her to commit murder. The motive was jealousy. Wright says VanderGeisen, who was heterosexual, was trying to break up her lesbian relationship with a woman identified as Sallie Collins, a close friend of the victim. The two reportedly had a heated argument over the relationship shortly before the murder took place.

While prosecutors are talking about the "whirlwind of lesbian drama" others are discussing the very real complications of providing adequate ASL interpretion in real time in the courtroom of complex legal issues:

Professor Jeff Braden, an expert in deafness and development, says that Wright should not face the death penalty, even if an ideal interpreter were available. "She is at more of a disadvantage than, say, if you or I were arrested and taken to court in Pakistan, where we'd be at the mercy of a court interpreter. Having an interpreter still doesn't change the fact that deaf people don't have a native language."

The problem, Braden says, is that it is not uncommon for a woman like Wright — deaf since early childhood and born to hearing parents — to get a late start in her exposure to language. In those critical early years, Braden says, critical communication skills are lost.

"There are a number of barriers that deaf people face that would put them at a severe disadvantage in a legal proceeding. … She'd be at a significant disadvantage, even with an interpreter." Braden told ABC News.

"Battery or manslaughter may be signed the same way. An individual is not getting info they need because American Sign Language doesn't [those symbols]," Braden added. He also notes that tone of voice and other nuances that convey meaning in the courtroom would get lost in interpretation.

Other disability and Deaf activists fear any special concerns given to Wright because of her deafness would signal that Deaf people are not responsble for their actions or capable of participating in society as equals. Of course, the death penalty eligibility complicates everything, not only raising the stakes but adding a level of legal complexity.

And there's this, from a March 7 article by Keloland television:

[Public Defender Jeff] Larsen pointed out that Wright is the only african american in the courtroom. He asked the all white jury panel about race. Although some acknowledged race issues have made them uncomfortable at some point in their life, all potential jurors said race won't be a factor in how they find the verdict. Jurors answered the same way when asked questions about Wright being a lesbian.

So, no black or deaf people on the jury, for sure, it seems. Any gay folks? Can this be fair under these circumstances?

More on Emilio

I posted about baby Emilio Gonzales on Wednesday, but here's a petition to sign for him. It does appear that public attention and involvement has had an effect so far.

Emilio has not gotten much national mainstream media attention so far, but for further info on the Texas futile care law, which was signed into law by then-Governor George W. Bush, you can check out the ever-dubious Wiki as a starting point. It lists several cases that have come under the Texas law since it was signed: Sun Hudson, Tirhas Habtegiris, Andrea Clark, and Baby Emilio.

Sun was the infant of a mentally ill woman and the first American child to be refused medical care against his parent's wishes. Habtegiris was an African immigrant woman who couldn't pay her medical bills, and Clark was a 54-year-old heart patient.

It's fairly clear that this law is principally applied to people without resources, since there have been no cases of people dying under this law who were, for example, adult white males or terminally ill people who can better pay their bills or access adequate insurance. This is euthanasia for the poor.

Things that crack me up, #20

It's not that there's accessible diving advertised on a giant sign at the beach in Valenciana that amuses me. It's that the huge universal symbol of accessibility is dressed up in a snorkel and little polka dot swim trunks. Like the chair is going in with him, or something. Like he's ready to barrel right off the end of the pier. He's ready!

Photo on Flickr by Krätze

Just don't bitch about it

From the Joplin Globe of Missouri:

Official lashes out after report

By Roger McKinney
COLUMBUS, Kan. — Information from an advocate for people with disabilities that the Cherokee County Law Enforcement Center may not meet all the requirements of the Americans with Disabilities Act elicited an angry reaction Monday from county Commissioner Pat Collins.

“People go too far,” Collins said during a meeting. “They carry this s--- too far.”

Gwain January, disability advocate for the Southeast Kansas Independent Living Resource Center, presented the county commissioners with information about nine possible violations of the Americans with Disabilities Act at the exterior of the law-enforcement center. He said the agency had not been granted access inside the building.

The law-enforcement center includes the sheriff’s offices and the county jail. It opened in 2005 and cost about $6 million to build.

The report from the resource center said, among other things:
— The ramp to the employee entrance is too steep.
— Entrances for the public and employees need a 5- by 5-foot landing.
— A curb ramp needs to be installed at both ends of a sidewalk that is divided by a driveway.
— An 8-inch step needs to be removed.

“Hopefully, these things should take care of the outside,” January said. He said the cost of the work should be paid by the architect or the contractor, not the county.

“It just makes me mad,” Collins said before making his statement about people taking things too far.

January said the resource center would be conducting sensitivity training for Columbus city officials, and that he plans to invite the county commissioners to participate, if they wish. January said part of the training involves spending time in a wheelchair.

Collins said he had no interest in participating.

“If I got in a wheelchair, I wouldn’t b---- about it,” Collins said.

Collins said he would be self-reliant if he were to become disabled, and he wouldn’t expect access to every building.

“I was raised different,” he said.

Commissioner Charlie Napier said people with disabilities pay taxes and have the same right to access to public buildings as everyone else.

Collins asked Napier if that were the case no matter what the cost.

Napier said it upsets him that the law-enforcement center apparently was not built according to the standards of the federal access law.

January was asked outside the meeting what he thought of Collins’ remarks. He said the law states that governments had until January 1995 to make all their buildings accessible, but many still have not done so. He said the resource center is not seeking immediate repairs.

“Mr. Collins has a right to his opinion,” January said. “We’re just trying to make a better world with equal access to all.”

Commissioner Rodney Edmondson said the county would provide a copy of the recommendations to county counselor Kevin Cure, and also provide copies to the law-enforcement center’s architect and contractor.

After January left the meeting, Collins was asked about his comments. He said his remarks were directed at agencies representing people with disabilities rather than the people with disabilities.

“I’m sick of it,” Collins said. “We’ll take care of these items, but what next?”

Sensitivity training

Columbus city employees will take part in sensitivity training as part of a lawsuit settlement agreement with the Southeast Kansas Independent Living Resource Center.

Disability Carnival #11

Trying out a new icon for the latest Disability Blog Carnival at All About aBILITIES. This is the sculpture of Alison Lapper that resides in Trafalgar Square.

The betrayal of ability

So here's some YouTube video of a Brazilian Candid-Camera-type show where pranks are pulled on unsuspecting passersby. This five-and-a-half minute clip shows a man in a clunky manual wheelchair at the corner of a busy urban intersection. After enlisting someone to help push him across the street, the man stages a tumble out of his chair in the middle of the crosswalk. People rush to help, dragging him fully across the street and attempting to help him into the chair again. At that point the man stands up on his own, revealing that the whole drama and his disability are a prank. Over and over again, throughout the clip, these tricked pedestrians turn violent with the actor, and several times he runs to avoid real injury and assault.



There are several voices in Portuguese commenting during the course of this, laughing at the events, but all I can think of is the anger of these nondisabled people assuming they are helping, assuming things about some stranger that turn out not to be true. There isn't enough time in these encounters for the actor to reveal much of his true intent and the violence is instantaneous upon learning the man can stand and walk. I can't help wondering how someone with legitimate impairments would be treated in the exact same situation, given that we sometimes get assistance thrust upon us unwanted, and given that not all people in wheelchairs are completely unable to stand or even walk.

Little Emilio and the Texas Futile Care Law

The AP story here:

A dying toddler facing removal of his life support system received a reprieve Tuesday when hospital officials agreed to keep his breathing device running until at least April 10.

The decision came hours after attorneys for Emilio Gonzales, a 16-month-old who doctors believe has Leigh's disease, filed a temporary restraining order request to prevent removal of his life support. Gonzales, who has been at Children's Hospital in Austin since December, was scheduled to be taken off life support Friday.

The deadline extension also came hours after Catarina Gonzales, Emilio's mother, appeared at the Capitol with lawmakers who support a bill that would prohibit hospitals from stopping life-sustaining treatment while a family pursues a transfer or other care.

Under the current law, doctors are obligated to give only 10 days notice before withdrawing treatment when further care is deemed medically futile, even over the wishes of the patient and family.

From the letter FRIDA (Feminist Response in Disability Activism) wrote to Texas Governor Rick Perry:

.... It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support....

Compare Texas' law and the hospital's decision to this recent NYT story on hospice for infants and the comfort and closure it provides for family.

Miss Ability lays down on the job

Back in January, I wrote about the Dutch show Miss Ability:

Miss Ability has been called the surprise hit of Dutch television in 2006, but the Times Online reported last week that the rights to the program in Britain, France, Germany and the U.S. have now been snapped up. Soon we, too, can look forward to a live beauty contest where disabled women compete in nightgowns and bathing suits, then present short video films on how they've "overcome" their physical conditions -- whatever impairments contestants have must be "visible to the eye" in order for them to compete. Viewers get to vote.

My opinion, expressed then:

This overcoming narrative -- particularly as part of a contest where the subjects must be "visibly disabled" -- is a paradoxical fiction. Each woman must look stereotypically physically disabled but prove she doesn't suffer the consequences her impairments or society create for that very visibility. Or that she doesn't mind. It goes without saying that the best woman in this contest will not discuss any mental illness or incontinence or lack of civil rights. She won't drool but she won't hide her limp either, because the audience needs to see that. Odds are she'll present as straight and white. She'll sing well and dream of world peace. Men find her pretty despite everything, and all is right with the world.

A recent commenter named Anonymous had this to say:

The winner of the dutch contest in 2006 was Roos Prommenschenckel. In fact she DID address the Parliament for the past year and in so doing a lot of good work for disabled people in Holland.

I could be wrong, but some of you do not seem to know anything about disabled people. Maybe that's because you seem to forget that this is in the Netherlands en NOT in America (which by the way also has these type of contests). I asure you it's not a freak show and we do not look down on these girls. Ok, so they do want to show they are beautifull (who doesn't?) but it's not all about that. More importantly it's about showing their strength and independance dispite their disability. Sure it would be nice if the girls could enter Holland Next Top Model (yes we also have this) too, but we all know why that's not realistic....

Well, and I answered with this:

While I'm not a fan of any "beauty contest," the difference with this particular Dutch contest is that it is live TV and random viewers get to vote rather than a panel of "experts." The venue change and the attitude of the company marketing the show make it clear this is not really about portraying strength and independence any more than any other beauty contest is about that. It's about appearance and walking (heh) a very fine line of socially acceptable femininity, with the disability expectations added in.

....Why isn't it realistic or appropriate to integrate everyone into the same beauty shows? What does it mean that people like you find it perfectly acceptable that there are separate contests with different criteria for disabled women? I'm not really advocating for integrated contests -- I think all these contest are problematic and exploitative of women. But I do think these special contests reveal further the sexism and ableism that is part of our cultural expectations of beauty and worthiness....

And I also looked up the winner. Just to see if she drools or limps or how she meets the contest requirement of having a disability "visible to the eye." This is Roos Prommenschenckel:

Obviously, she is a very beautiful woman. (Visual description: The photo shows Prommenschenckel from the shoulders up. She's a white woman with a creamy complexion, big beautiful smile and long wavy brown hair that goes past her shoulders. Her makeup is subtle and she's wearing a chunky beaded necklace that hangs below the thick white cervical collar around her neck. The cervical collar is the only indication she has any physical impairments or is not your average model.)

Here's another picture of her: (Visual description: Prommenschenckel is lying horizontally and the image shows her from the waist up. She's wearing a black gown with a tight camisole bodice and a skirt of tulle that forms a wall of fluffy blackness on the entire right side of the photo, hiding her hips, legs and feet. Her right hand rests on her stomach while her left reaches up as if to hold all that tulle back, or push her skirt back down. Her face is tilted just past horizontal so she gazes at the camera upside-down, a soft smile on her face. She's reclining on a lush teal velvet chaise, her hair cascading off the edge toward the floor. She's wearing a tiara in her hair, and an impressive collar of diamonds at her neck, as well as a matching bracelet.)





















It's a very seductive, submissive pose, and not just because she's lying prone. With her skirt flipped up and blocking all view of her from the waist down, well, her legs might be in any position. Anything might be going on down there, and that's an intentional tease, of course.

Here's the thing that comes along to complicate any strict feminist criticism of objectification in the images of Prommenschenckel lying prone: She has a condition known as spasmodic torticollis. Also called cervical dystonia, it's a painful neurological disorder that, it appears, she manages by using the cervical collar sometimes, and lying prone sometimes.

In her travels as Miss Ability, Prommenschenckel's been photographed in many less suggestive variations of the above sexy beauty queen boudoir pose.

Here, in this next photo, she reclines in the foreground in a manual wheelchair that tilts back, a pillow under her head while a crowd of people sitting nearby watch and listen to her. She's wearing a stylish denim jacket, slim-fitting gray shorts that end above the knee, and a weird flowery hat. She has a microphone in her hand and off to the left there's a handheld television camera with another microphone attached -- the man holding it is mostly out of the picture. A middle-aged woman stands next to her chair and a half dozen people sitting just next to her look on, the closest are a young blonde woman with her arms crossed and a guy sitting in a bizarre-looking scooter.

My Dutch language abilities are non-existent, but the online language translator says this is the "launch" gathering for something. While it is unusual to see someone in public lying prone (well, or wearing a tiara), this picture is neither seductive or objectifying. There are quite a few other photos of Prommenschenckel at the site promoting her functional role as disability spokesperson. And they show that the context of a beauty queen lying on her back matters a great deal. A critical analysis of her physical position cannot ignore that it's a physical accommodation for her impairment.

But then. There's also this pic of her at the Miss Ability finale, walking unaided on the stage catwalk before she is crowned:

It's confusing but not unexpected. The winner of Miss Ability, a contest where disability must be "visible to the eye" presents herself at the finale of the event in a flowy orange dress and strappy silver high heels, with only the cervical collar (here covered in orange fabric so that it looks like an unwieldy scarf) to mark her as disabled at all. Recall that the Dutch public votedfor the winner during this live entertainment TV show.

The lack of any obvious impairments is mitigated by a medical device signifying impairment. Of course, this is a still photo that wouldn't reveal, for example, a limp, and anyway visibility is not a good indicator of actual impairments -- that's one serious criticism of the ridiculous rules for a contest like this. But my point is that whatever her actual qualifications as a gimp, she looks like a swimsuit model who wears clumsy neckwear and occasionally lies down in public.

Disability-wise, I have as much visually in common with Miss Ability as, femininity-wise, Rosanne Barr does with Cindy Crawford. I don't know exactly who Miss Ability ends up representing , but unsurprisingly, it's not me. And it's no shock that a television viewing audience would choose a woman who can pass as not only "normal" but gorgeously "normal." And it's interesting that the winner not only meets the cultural standards of femininity and beauty, but often does so while lying down in what is a fairly submissive position. Necessary for her, I have no doubt, but how that's interpreted in a beauty pageant is a different thing altogether.

Is this groundbreaking or subversive to standards of femininity or ability? I don't think so.

Oh, and here's the group photo of all the contestants. What to make of that?

(Visual description: Nineteen pretty young white women are arranged in two seated and one standing row. The winner is in the center of the second row wearing the chunky necklace I described in the first image above. If any of these 19 women use a wheelchair or cane or even have an aversion to high heels, you cannot tell it from this picture. If there is a wheelchair present it has been completely hidden from view.)

Getting noticed

The National Disability Arts Forum (NDAF) of Great Britain has an online poster exhibition of posters for disability events that is very inclusive -- posters about all varieties of disabilities and art representing them.

Visual description of the poster shown at left: In primary colors. The central image is a man in a manual wheelchair with his right arm upraised, hand in a fist. He's drawn in yellow, with red and black shadow and a splash of yellow following him to suggest he's smashing through a wall. Next to his upraised arm, in big bold red letters: "The Ghetto" and beneath it "Disability Cabaret." The poster background of bright blue makes the yellow and red pop. Below and behind the man is a shadowed gathering of people and a sign I can't tell what it says.

About "The Secret"

The Secret by Australian Rhonda Byrne is the latest self-help book (and DVD!) to become a bestselling American phenomenon. From Newsweek:

The "secret" is the law of attraction, which holds that you create your own reality through your thoughts. You can, if you wish, take this figuratively, to mean that by changing your thoughts you can feel better about your situation in life. Or you can view it as a source of inspiration—that by believing you will succeed, you will perform better in the race or the test or your relationships.

But that's not what "The Secret" is saying. Its explicit claim is that you can manipulate objective physical reality—the numbers in a lottery drawing, the actions of other people who may not even know you exist—through your thoughts and feelings. In the words of "author and personal empowerment advocate" Lisa Nichols: "When you think of the things you want, and you focus on them with all of your intention, then the law of attraction will give you exactly what you want, every time." Every time! Byrne emphasizes that this is a law inherent in "the universe," an inexhaustible storehouse of goodies from which you can command whatever you desire from the comfort of your own living room by following three simple steps: Ask, Believe, Receive.

Byrne writes on losing weight:

Whether people have been told they have a slow thyroid, a slow metabolism, or their body size is hereditary, these are all disguises for thinking “fat thoughts.” If you accept any of those conditions as applicable to you, and you believe it, it must become your experience, and you will continue to attract being overweight....

Make it your intention to look for, admire, and inwardly praise people with your idea of perfect-weight bodies. Seek them out and as you admire them and feel the feelings of that-you are summoning it to you. If you see people who are overweight, do not observe them, but immediately switch your mind to the picture of you in your perfect body and feel it.

As Peter Birkenhead at Salon writes, this drivel wouldn't matter so much if Oprah, arguably America's most influential celebrity, hadn't been championing The Secret as inspirational and useful truth each person only need follow to make their life's dreams come true.

The problem, of course, is if you're actually and already fat or unsightly or poor or disabled or whatever. Then, according to the law of attraction as expressed by Byrne you should avoid all mirrors and seek out people who do not have your personal experiences and challenges and do not look like you. If you can't find those people, then basically you're screwed.

The Toronto Star's recent analysis includes this exchange between another self-help author, Marie Diamond, touting the law of attraction and people trying to understand the illogic of it all:

[Publisher] Burman hosted Diamond at an event at Indigo Books on Bloor last weekend, where she took some questions from a packed audience. "I'm a really big believer in The Secret," said one, a young black woman. "But I also believe that discrimination and racism are real. How can you harmonize those things?"

Diamond, a middle-aged Belgian woman with a welcoming air, nodded knowingly. "You just said you believe in discrimination. You be-live it. I'm going to ask you to stop believing it, because if you focus on the negative, you project it yourself."

Another, from a young man. "I really love what you're doing," he says. "But how, for example, was 9/11 attracted to the people in those buildings? That's something I can't understand."

Another thoughtful pause. Diamond, in her madras blazer and jeans, furrows her brow and speaks softly, breathily. "Sometimes, we experience the law of attraction collectively," she says. "The U.S. maybe had a fear of being attacked. Those 3,000 people – they might have put out some kind of fear that attracted this to happen, fear of dying young, fear that something might happen that day. But sometimes, it is collective."

Except for Byrne's quote above about losing weight, which asserts that overweight people are not overweight due to medical conditions they've been specifically informed of but rather negative "fat thoughts," I've not seen specific references to disability in this most recent law of attraction craze. But it's implicitly there, and has been explicitly part of the law of attraction in many of its other incarnations.

This is the new age version of "You're not praying hard enough." Faith and belief will fix your life and if your life does not improve then it is your fault for not having sufficient faith and belief.

Ask. Believe. Receive.

"Be-live it!"

Euthanasia in Oregon

David McDonald at DAWG Oregon (Disability Activists Work Group Oregon) had a friend named Tracey. He knew her for seven years and worked directly with her at a day program she attended for adults with developmental disabilities. David says she was "fiesty" and uncompromising, a loner, but a "tough chick."

Tracey was small. At age 44, she was just 4' 8" and 80 pounds in her wheelchair. She wasn't very communicative -- "non-verbal" is a more clinical term for it -- but as one of three caregivers for Tracey David spent five years working closely with her, helping her eat, changing her when needed, taking her for rides in his truck where they shared long one-sided verbal exchanges. David says she was quiet but had a big spirit. He knew her and called her friend.

In April of last year she was diagnosed with stage 3 colon cancer. David tells much of the story at his blog:

She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options.

An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis).

That makes seven people, if I count correctly. David indicates that they got off to a fairly sensible start and yet:

We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

What should have been a committee convening to manage Tracey's continuing health care during a critical time apparently became a select and fractured mini-ethics committee that determined Tracey's life wasn't worth saving. This decision wasn't initially made formally, it seems, but through the actions of a few or even through the very act of creating the "Advocacy Team" to make decisions appear legitimate.

David says (italics mine):

From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan.

David and another member of the Advocacy Team complained and were subsequently quietly excluded from future decision-making. The health care rep on the team took a 10-day vacation to Greece while Tracey waited in limbo with her medical records not even available for her team to read. David contacted Oregon's Protection and Advocacy agency for help on the day she was enroled in hospice. Instead of consulting the hospice program before a client is committed to it, Tracey's team consulted with hospice only after she'd been enrolled in the program for two weeks.

David's objections to this complete failure to address his friend's immediate medical needs resulted in him being labelled "disruptive" and "ancillary," and against Oregon laws about changing the advocacy team while critical care decisions are needed, attempts were made to kick him off the team. Lawyers got involved and communication became even more complicated.

Meanwhile, Tracey was bounced out of hospice in July because she was not "homebound." She'd been attending the day program all this time, riding the public lift to get there. Still, leaving hospice didn't mean actual treatment for her cancer.

David again (italics mine):

Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

Basically, other members of the team had made care decisions prior to the actual team's first meeting, and had represented those decisions to David and the rest of the team as doctors' advice. Inaccuracies about her abilities and life expectancy were stated, and then Tracey's quality of life was determined from that.

David and his wife tried to get guardianship of Tracey when it was clear that she was in danger of being given some random state guardian who did not know her, and David feared, would sign end-of-life documents like a DNR (do not resuscitate order). Tracey had had no treatment at all for her cancer, but David was not ready to give up:

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”.

David tells me, "I visited her at home, leaving 15 minutes before she died. As I was leaving I kissed her on the forehead and told her 'your death will not be in vain.' It won't. It can't be."

On his blog, David writes, "In life she was easy to overlook, but the way she died will not be."

For that to be true, the rest of us have to care. We have to be bothered enough by the fact that a critical medical diagnosis for a woman who could not speak for herself was met with a team of people dedicated to abandoning her instead of seeing what appropriate medical care might have done to treat her.

We have to picture Tracey. (Or picture me, if you like. There were about six months when I was mostly "nonverbal," and communicated by writing notes people sometimes chose to ignore. There was a doctor at rehab that my parents had to talk to sternly several times before she began taking the time to read what I wrote about my medical care while she stood at my bedside.)

Tracey's story is a scenario that Ashley X's parents feared for their child, and whether or not you agree with the medical treatments they inflicted on Ashley (I certainly don't), concerns that she would meet a fate like Tracey's at the hands of some committee that did not have her best interests at heart are a primary justification for those surgical alterations.

For Tracey's fate to not be overlooked, we have to ensure that the structure of advocacy and care already in place for the most vulnerable of people is actually accountable for serving them fairly and well. David tells me he has the documentation showing all that happened with Tracey's ISP Team. The Advocacy Team he had been a part of was nonfunctional about three weeks after this began. It just needs to be looked at and Tracey's fate taken seriously. That's the job of the Oregon Advocacy Center. This is their contact info:

Oregon Advocacy Center
620 SW 5th Avenue, 5th Floor
Portland, Oregon, 97204-1428
503-243-2081 (Voice)
1-800-452-1694 (Voice)
503-323-9161 (TTY)
1-800-556-5351 (TTY)

Will her leg fall off?

Story here.

Excerpt:

An online gambling site is inviting macabre bets on whether Heather Mills' prosthetic leg will fall off during her participation in US television show Dancing with the Stars.

The Antigua-based Bodog.com is inviting punters to lay money on whether Mills, the estranged wife of Sir Paul McCartney who lost her leg in a 1993 traffic accident, would suffer a mishap in the show.

The site made a "no" outcome the heavy favourite, and said Mills's leg "must fall off, not be purposely taken off, during a dance routine for all 'yes' wagers to be graded a win".

Via Ouch!

Things that crack me up, #19

Ever get the feeling you're not welcome?

Visual description: Three photos from CollegeHumor.com all regarding parking spaces and disabled access. The first shows a blue "Handicapped Parking" sign and another sign just to the right reading "Danger Falling Rocks." The second is a close-up of a sign that reads "Reserved Parking for New and Expectant Mothers, the Elderly, Injured but not Handicapped." The third photo is of a single parking spot with a blue access sign depicting "P" for parking and the universal wheelchair symbol. The parking spot is curbed on three sides and there is a thick post (probably a tall street light) in the center of the spot, making it completely inaccessible for any vehicle to park there.