AHA!

I've just found this. It's a program that provides a virtual keyboard that I can type on with my mouse. Yay! Seems to work and it's freeware!

Transgender story on All My Children

From the Texarkana Gazette:

The story that AMC has weaved with the telling of Zoe’s tale has been wonderful. Amazing. And it surprises me.

I had no idea Zarf or Zoe would command this much presence and story.

The scenes where Zoe made her first appearance on Bianca’s doorstep and the subsequent reveal to a stunned Bianca were outstanding scenes. Better than I thought AMC could ever pull off.

. . . However, and here’s a spoiler, so stop reading if you don’t want to know: Zarf is going to become a prime suspect in the show’s Satin Slayer killings.

The residents of Pine Valley should be prepared to be knocked off their feet next week as Zarf is set to explain his story to those who suspect him of murder.

Those following the recent Delink Twisty/transphobia debates all over feminist blogland will see the relevance of this: Zarf/Zoe spent today's episode in jail, and as evidence that she is the serial killer everyone believes her to be, another character even mentioned the psychokiller in The Silence of the Lambs. I wouldn't call that coincidence. More like hateful stereotype.

Incidently, the character seems to be entirely innocent.

Neglect

Yesterday's list of glorious gimpiness failed to mention my fabulous elbows, one of which I lean on to type. Today it registers jealousy with a painful infection probably caused by a disintegrating armrest on my scooter harassing it for some weeks now. I'll not be typing much until it heals, since my gloriousness does not currently include patience for typing with just one pinky to avoid my usual position. The new armrest is due here next week.

. . . And you're tired too

But really, this article out of the Beach Center for Disability at Kansas University is the best discussion of the issues the Ashley X case represents that I have seen anywhere. Some quotes:

We do not presume to judge the parents or physicians in this particular case. As a case study, however, the case raises complicated issues for us (the Turnbulls are parents of a man with disabilities, and all of us are researchers).

Why must an unusual medical intervention be even considered for the family who wants to keep their child at home? It shouldn’t, at least not until all efforts to provide support to the family, in its home, have been exhausted. Good policy begins with family support.

And:

Two standards guided the physicians in this case.

One was that this case and subsequent ones should be decided on a case-by-case basis. Due process prefers presumptions, not unguided case-by-case decision-making. At law, a presumption (innocent until proven guilty) pushes decision makers toward a pre-established, socially desirable result. Usually, the presumption can be overcome by sufficient proof (guilty beyond a reasonable doubt).

Case-by-case decision making, without any presumption against surgery, much less such an unusual one as growth attenuation, gives free rein to the physicians and institutional review boards. History teaches that unchecked professional freedom leads to over-use of procedures whose long-term efficacy is unknown or is demonstrably injurious.

The second standard was the usual one of medical risk-benefit. Here, questions arise. What are the long-term benefits of growth attenuation surgery? Will the procedure definitely reduce the child’s weight? Will it produce no undesirable effects? Clearly, the surgery will not prevent the parents from aging or necessarily lead to better and longer-term in-home care.

And this:

One of history’s lessons is that evidence-based decision-making by those who purport to act in another’s best interest has been elusive. Another is that it is exceptionally difficult to stand in the shoes of a person who is a minor with a disability and predict what that person would want, especially where the person’s life has provided no warrant — no evidence — about what the person would want.

Further, disability is a condition that society creates by its failure to accommodate to people with impairments; impairments are the inherent conditions that affect a person’s functioning. Stigma — the negative connotation arising out of difference (such as impairments) — still drives decision-making.

Glorious Me

A couple of days ago Zuzu at Feministe challenged her readers to reveal what they love about their bodies:

We’re conditioned, particularly as women, to be self-deprecating, to not take up space, to not revel in our bodies and ourselves. We can get 150 comments in a thread about when we realized that we were aware our bodies weren’t up to snuff; let’s see how many we can generate praising ourselves.

Your mission: list at least five things you love about your body and yourself. Five is the floor; you can always do more. And no self-deprecation! No offsetting a compliment with a dig.

As Lymphopo at As The Tumor Turns notes, this is a challenge of a different nature for those of us who not only are women living in a culture that teaches us to be critical about our bodies, it tells disabled and damaged bodies that they don't really qualify for "normal" consideration at all. Lymphopo says:

As I read through the lists people posted in the comments, I couldn't help but notice how many women said they loved their bodies because they're strong and healthy and sexually attractive. They love things like their lovely mouths, their hour glass figures, their beautiful breasts, their adorable curves, their perfect posture, their strong legs, their awesome hair. They love being able to run marathons and climb mountains and be great in bed.

And I couldn't help but wonder: what if they didn't have these things any more? What would happen to that love if their youth and health and vitality went away? Would they still find something to love? What will happen to them if the day ever comes when their hair falls out, their breast are cut off or wither from age, their bodies grow old or sick, their faces or limbs are maimed and disfigured? Will they find a way to go on loving bodies that have broken down and betrayed them?

I enjoyed reading through about half of the comments Lymphopo describes. I wanted to add my own, but my criteria differ enough I felt I would be creating a sort of "special" category of my own, which defeats the communal purpose of adding to the list.

I wouldn't say I love my body, but I'm impressed at how it's hanging in there despite a pretty serious lack of cheerleading from anyone but me for its peculiar beauty.

I love the fact that I had a dimple before my facial muscles gave up enough for it to have been MIA for about 30 years now. I love my phantom dimple that maybe only I recall.

I love my one perfect breast. The other one gets the runner up award. Yeah, I know people think they're supposed to be a pair, and they are quite similar. But I have just the one stunningly beautiful boob. I sit crooked in my chair so it all sort of works out.

I love my hands. And the memory of when they worked. I studied classical piano for ten years, starting at age six because my Kindergarten teacher said smart restless kids need hobbies to not turn into giant pains-in-the-ass. My hands were limber and graceful and technically-talented, and now I'm happy that they work creatively at this typo-ridden hunt-and-peck thing where half the letters of what I write are tapped out with my left thumb and right pinkie. The rest from clumsy knuckles and trips to the backspace key. But my fingernails grow into pretty ovals and I like to wear rings. I love my hands.

My hair was beautiful until a year and a half ago. Fine-textured, but thick, a reddish-brown of many glimmering shades. It's been tormented by harsh medications and the practical hands of others since then. The war with the grays, too now. Half of it fell out last April and I'm not so portable with the vent, so my vanity only occurs near mirrors or the bemused laughter of others. I keep thinking I'll give it more love sometime soon.

What else? My ass? I've been sitting on it all my waking hours since 1983. It functions well in that capacity. I imagine it's flattish by now though. I'm ambivalent.

I once had a gangly physical grace about me that translated well into my manual chair, worked alright in my original electric scooters, and rarely surfaces with the newer scooter that has engineered out all individuality of driving style with its anti-lawsuit features like automatic brakes. Still, I like to think I look good sitting here.

Blind Rage and the legacy of Helen Keller

It wasn't until I began reading Georgina Kleege's Blind Rage: Letters to Helen Heller that I realized my own ambivalence to the deaf-blind female icon of disability. Written as a series of letters interrogating Helen Keller and the written record she left behind of her life, Kleege explores what has been left unsaid, altered for public consumption, and molded to fit the appropriate image of what a woman without hearing and sight was expected to be in the late-19th and early-20th centuries.

A blind woman herself, Kleege fuels what could be called either creative nonfiction or a feminist critique of Helen Keller's life and autobiographic writings with the frustration and anger of a lifetime of comparisons to Keller -- the saintly example of a proper, over-achieving disabled girl famous all over the world. I learned last year that critiques of famous public figures with disabilities from a feminist/disability rights perspective are just about impossible to find, so this book is especially welcome and needed as a contribution to both feminist history and disability studies.

Kleege's approach in questioning Keller's life is a distinctly feminist one. An awareness of "the gaze" exists throughout the book, and though it is primarily a nondisabled gaze upon the body and actions of a blind-deaf woman, as a disabled woman myself I find this inextricably intertwined with the familiar male gaze of feminist theory and critique. (And Michel Foucault's medical gaze, as well.) After all, the nondisabled gaze upon Keller would have been quite different were she a deaf-blind boy and man instead of a girl and woman. Ability and gender are inseparable in the complex personal interactions of disabled women within a society that privileges both male and able-bodiedness.

The book is divided into four sections: Consciousness on Trial, Full Body Contact, Working the Pump, and The Hand's Memory. Roughly, these cover Helen's childhood attainment of language, adult relationships, making a living through her famous story, and old age.

I'd read part of Consciousness on Trial a couple years ago as part of the anthology Points of Contact: Disability, Art and Culture which had at least one other essay that examined the power of the sighted gaze upon blind folks and intrigued me as a sort of colonization of disabled bodies. That colonization leads to assumptions about the minds of disabled people and what they are and are not capable of as the Other -- we've seen this public process recently in the case of Ashley X.

At age eleven, Keller wrote a story for the man who headed the Perkins School for the Blind, and he proudly published it as an example of the excellence of the school and his young deaf-blind prodigy. But the story turned out to be strikingly similar to a story Keller had no doubt been read at age eight, during the summer shortly after she began to understand the handsigning teacher Annie Sullivan used to communicate with her. She was learning new words, language, at an astonishing rate. Communicating exhuberantly. Absorbing new ideas like a sponge.

The school put Helen on trial for plagiarism, attempting to discern if Sullivan was honestly relaying the true achievements of her famous student or exaggerating her capabilities. Without "Teacher" at her side, young Helen faced a panel of unidentified men and women she could neither see nor hear who interrogated her about the complex concepts of knowledge and memory. Kleege imagines the details of the scene and the aftereffects it had on Keller's confidence.

Kleege also unflinchingly explores Keller's life through these nondisabled preconceptions and doubts of what a deaf-blind woman can be:

So here it is. Here's what I've come to ask. Were you a hoax, Helen? A fake? There, I've typed the words. Forgive me, Helen. It's a betrayal, I know. My stomach feels tight and slimy. My flesh is pulling back from my skin. But I really need to know. Because as I'm sure you've thought from time to time, maybe every hour of every day, it's what they think. Them -- the ablebodied, the hearing and seeing majority, the Normals, as some of us call them today. They may play lip service to your achievements, may laud all you accomplished, hold you up as an example to children: "Why can't you be more like Helen Keller?" But behind all those words there's a doubt. Maybe you were a hoax, a fake, a fraud. Yes, Teacher tamed you. She cleaned you up and made you docile. She taught you how to shake hands and smile for cameras. She taught you to make your little hand gestures, and to mumble on cue. But who's to say you were really saying what she said you were? (p.31)

What it would mean to be a "hoax" in this context is tenuously dependent on what the nondisabled public believes is the distance between their able-bodied expectations of who Helen was and all that she and Teacher offered about who she was. As Kleege makes clear, what they offered the public had a great deal to do with what the public was ready or willing to accept. Still, as interest in her as a Vaudeville "act" proves, Helen's very livelihood was dependent on the public's awe and borderline disbelief of everything she was. A charismatic storyteller, Helen (mostly with Sullivan) toured Vaudeville stages for years as a means of financial support. The novelty of her being considered a being of intelligence and consciousness is what made her a ticket-selling act. Or, more pessimistically stated, the continuing doubt of her consciousness and humanity are what drew the crowds.

With a lifetime of confounding expectations of the nondisabled public, fielding questions implicit and explicit about capability, Kleege understands how the pressure effects Keller:

It's the doubt, Helen. You know about the doubt. It's that nagging unease at the back of your mind whenever anything good happens. You're in school and you wonder, "Is the A on this paper a gift? Would a Normal student get an A for this?" You get a job, but you wonder, "Do they really think I'm qualified or is this just some sort of affirmative action quota?"

....Of course you know about the doubt. The plagiarism case seems to have been the precise moment in your life when the doubt first took hold. Because you must have understood that they would never have done it to a Normal child. If you'd been a Normal child, they would have said, "So someone read you the story, and you remember the story but don't remember the person reading it to you. OK. I can see how that could happen. Sounds reasonable to me." But because it was you, and because seeing and hearing had nothing to do with your experience of the world, they couldn't let it go at that. (pp. 33-4)

As a specific interrogation of the icon Helen Keller, Blind Rage is deeply compelling. Kleege speculates about Helen's adult relationships and possible romantic connections. She explores the complex power struggles undoubtedly present in her lifelong association with Sullivan, who was a recovered blind person deeply aware of the threatening abysses of poverty and dejection awaiting helpless disabled women. She questions to what degree the medium of Sullivan for so much of Helen's communication, and the enterprise of being such a famous person, affected who Helen was and who she appeared to be.

On a broader level, Kleege's book works as a discussion of how history remembers those who can't always speak for themselves, those living under the shadow of monolithic stereotypes of what they can be, and those whose consciousness and humanity are relentlessly doubted.

_____________________________________________

Visual description of photos: The three photos above came from a simple Google search for images of Helen Keller.The first is her in profile as a child, the second is of her as an adult with Annie Sullivan next to her signing into her hand. The last is a portrait of Keller as an elderly woman, looking directly into the camera. It seems by far the most honest and unstaged and, to me, interesting of the three.

Patston on Ashley

This is short, but worth reading.

Teaching "The Elephant Man"

Conspicuously missing from yesterday's slumgullion: Stephen at Planet of the Blind briefly reviews the movie by David Lynch and how it addresses questions in the news lately about disabled folk and the medical community.

Saturday Slumgullion #23

Flea at One Good Thing answers an email with questions about raising a child with obsessive compulsive behavior. Scroll down to the "December" heading for just this part if you must.

An old post by Chris Clarke at Creek Running North on "Wheelchair Invisibility":

I got Herb situated at the section where his chair could slide underneath, and we chatted for a while until the bright college kid waiter came to take our order.

Twenty bucks says that any disabled folks reading this know exactly what happened next.

What part of "Nothing About Us Without Us" don't they understand? Kicking the gimp off the panel in Camden, UK.

A Scottish charity launches ad campaign comparing folks with Down Syndrome to pets. Their rationale seems to be that since more Britons give to animal charities than charities for the disabled, this will prick people's consciences. Or something.

In Sydney, Australia, "Have Wheels, Will Travel. It's a Joke."

A story of disability and marriage in Nigeria. Cringe-worthy English and attitude here, but hey, a detailed story of living with a disability in Nigeria:

Mr. Pam narrated that after the accident, there were various forms of challenges especially from his parents and few friends who saw no reason in marrying a lady that could not make use of her legs, adding that his insistence to forge ahead with the relationship was followed by denial and rejection from his family and some friends.

Pam stated that after the accident, he always realised that she could not use her legs anytime because she could no more escort him as she used to do, stressing that in spite of the unfortunate situation, nothing changed concerning her character and attitude towards him.

Performer Claire Cunningham on her dancing and artist's philosophy:

"The idea I put forward was about finding a performance style that used the abilities created by my disability - the upper body strength I have as a result of using crutches. To me that meant exploring aerial techniques, because, like with my crutches, I'd be bearing my weight on my arms. I thought I would concentrate on using equipment like ropes, slings or maybe trapeze. See if there were ways to make my crutches part of that equipment. Maybe devise a performance piece. And in the process, through Waterbaby - the company I've formed with my colleague Linda Payne - perhaps create movement training programmes for physically disabled individuals."

"For every fatality in Iraq, there are 16 injuries." An op-ed on the war from the Hartford Courant.

New Jersey may remove ableist language from state constitution. The language in question was added by amendment in 1844: "No idiot or insane person shall enjoy the right of suffrage."

A special ed student is told by his school principal that he can't compete in a spelling bee because he doesn't "have the brains":

The controversy at the East Flatbush school began in December when Lamarre, who won his class spelling bee, was declared the school's winner after no other class held a competition.

Lamarre got a laminated "school champion" certificate, but he says that later that day, Brown told him he couldn't move to the next level because he was in special education classes.

I am tired

Because fear and hatred of disabled people hides in people's hearts in the same way as sexism, transphobia and racism:

Ashley is not a "disabled" person that can enjoy a stroll down the mall for social stimulation. A 3 month old mind cannot do such a thing.

Personally, I'm tired of liberal whiners thinking they are better than everyone else.

The word disabled gets used way too much. If you can make your own decisions and think for youself, then guess what, you're not disabled.

Ashley on the other hand can do not of these things, her I would considered disabled.

Because so many people deny the slippery slope, but during the Schiavo case a common argument to silence the voices of disabled people was that Terri wasn't disabled but brain-dead, and now a common argument to deny the voices of disabled people is to claim Ashley's level of consciousness (higher than Terri's) is comparable to a turnip and also irrelevant to our experiences:

The problem is modern medicine can keep a turnip alive for many years i.e. 100 years ago this child would have died at a very young age as mother nature intended. But since we have to play God and keep the turnip alive then we also get to play God and choose when/how to trim the turnip when it grows in a way we deem unfit. Basically this treatment is ENTIRELY for the parents benefit and as such it does help the parents but please drop the delusion that it helps the vegetable because the vegetable would be best off with as little pain inflicted as possible i.e. let the vegetable die.

Because I know some supposed "turnips" online who slay me with their sharp intelligence:

Please remember that disabled women are women, too. So much of these discussions go back to a description of disabled people as being passive recipients of care from “mostly women”, leaving disabled women totally invisible in the whole thing. I’ve seen really good feminist disability writing (try Jenny Morris), but feminist writing that approaches disability primarily as a caregiving issue isn’t generally it — it casts women as the victims of the existence of disabled people (including disabled women) and usually proposes horrifically oppressive solutions to the problem of our existence.

Because this isn't about just one child:

The action is in response to the AMA’s sanction of the “Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case. This AMA owned-journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.

Because there are other signs that society is becoming more impatient with the existence of disabled folks:

For example, Dr. Goldberg said, a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples “losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.”

Because so many of our supposed allies seem unable to listen or offer real support beyond their own fears and agendas:

If I were this girl’s caregiver, my worst fear would be that there would be a chance one day that I may not be around to care for her. And that she might end up in hospice care, where she could be sexually abused and end up pregnant. And that because she’s white, there would be a lot of antagonism towards aborting said pregnancy to spare her the misery and that a bunch of “pro-lifers” would stake on the hospital, Terri Schiavo-style, enamored of the idea of a pregnant white woman without a real will of her own. In other words, the perfect baby incubator. There’d be moaning and wailing and sentimental rhapsodizing about getting a “miracle” baby out of this poor girl. Doctors, under all this pressure, would cave because it’s not like she can really do anything about it. And then the baby would be born and everyone would be all in raptures and Reader’s Digest would have an article about it and Ashley would be reduced from a human being to a baby incubator. So you better believe I’d want to just circumvent that. This situation has nothing to do with eugenics unless you’re paranoid enough to think that the genetically normal offspring of college-educated white people are a target.

Because of the disrespect:

While I certainly don't envy your situation and feel blessed that I am lucky to not be disabled, I am sickened by your rantings. Who exactly do you think you are? Your disability is NOT an entitlement to place judgement upon others.

95% of the posters that agree with you are only agreeing out of PITY. They are too short-sighted to see that your particular situation, contrasted with Ashley's, is like night and day. Instead, they ignorantly assume that your ridiculous 'I am Ashley' statement is true simply because you both have severe disabilities.

Why don't you reveal your true motivation? It must be nice to have a link to your blog on CNN, right? Enjoy your fifteen minutes of fame but, seriously, quit with this betrayal nonsense. I mean, come on, to refer to her parents as "parents" (I'm referring to the quotation marks)? Are you actually advocating that they did what they did for any reason other than absolute love, caring and adoration of their daughter?

You may be disabled, but you're still a judgemental, self-righteous prick.

Because the weird convergence of attention and disregard is a kind of quiet violence:

Maybe, just maybe, bloggers who are disabled don’t really want to discuss shit like this over and over and over again–especially when people are not just discussing their right to access or something like that (where the presumption of humanity deserving of life is at least present), but are actually challenging disabled peoples very right to live as autonomous respected human beings. Maybe bloggers who are disabled really don’t feel like debating whether or not they are “burdens” worthy of extreme forms of violence just to suit able-bodied people. Maybe they aren’t interested in debating whether or not they have a right to be alive.

The 6th Disability Carnival is up!

Head over to The Life and Times of Emma to see the carnival's collection of writings on relationships and disability. It's divided into "Able bodied people writing about their relationships with disabled people," "Parents of Kids with Disabilities Sharing Their Experiences," and "People with Disabilities." Lots to occupy yourself with reading over the weekend.

The next disability carnival is back at creator Penny's Disability Studies, Temple U. and the theme, should you choose to accept it, is "disability history" and "disability and the arts." The show opens on Thursday, January 25, but the submission deadline is Monday, January 21. You can nominate your own or someone else's writing through the carnival submission form, or because the form doesn't seem to be friendly to the sight-impaired, just email the submission to Penny or leave a comment on the blog.

On the Chicago protest against AMA

From the Associated Press

A report from protestor and FRIDA member Amber Smock on the events of the day:

We targeted the AMA because it sanctioned the "Ashley Treatment" by publishing the original article describing it in one of its publications, the Archive of Pediatric and Adolescent Medicine. In addition, the publication's editors recommended that the way to find out if the "Ashley Treatment" was beneficial was to perform it on other children.

Our demands were threefold. First, we asked that the AMA's Committee on Ethical and Judicial Affairs meet with a team of advocates from the disability community to review the case. Second, we asked that the AMA issue a formal statement of support for MiCASSA. Third, we asked that the AMA issue a statement condemning the "Ashley Treatment" for other children.

On Thursday afternoon, our coalition met up at a coffee shop, about twenty strong. (FYI having coffee before an action is a really, really, really good idea!) We would be joined by others at the site. We lined up and proceeded to the building housing the AMA offices. We arrived and attempted to enter through the accessible entrance. Security guards blocked the majority of the group from entering, citing the "fact" that the lobby was private property. Our group began entering through the *other* accessible door. Most of us made it in. Reporters had already arrived and had begun attempting to interview the protesters. Our negotiating team began attempting to meet with AMA CEO Michael Maves.

After several minutes of attempting to gather in the lobby, our team decided to move outside because we were losing the opportunity to get recorded on TV cameras. Our negotiating team remained inside to continue fighting for access (the Michael Maves kind). Once we moved outside, we faced a barrage of TV cameras, as well as print and radio reporters. The media presence was truly incredible and our coalition had worked very hard to achieve that. We whipped out our protest signs, which included slogans such as "Operations Not Accommodations" and "AMA: Stop Medical Oppression of Women." (Thanks to Sharon Lamp, who is DA QUEEN of good slogans!) Gary Arnold then led the group in a skit on how to apply for an ethics job with the AMA.

Then, while we waited for news of negotiations, we chanted and chanted and CHANTED!!! The police wanted us to move away from the building and gave us three warnings. The media were complaining they could not interview us, so we went ahead and moved farther away, so we got interviews and plus, the people looking down from the highrise building had a good look at the disabled people making a stink on the ground! The employees sure had an exciting day. Many came down to the lobby to observe what was going on.

After about 45 minutes, our negotiating team came away with a deal: apparently the CEO was on a plane somewhere and unreachable (so they say...). His secretary committed to securing us a meeting with her boss next week. You know what will happen if that doesn't happen....!!!!! So we will be following up with all of you for your support if they don't meet our promises!

At that point, we had a load of media coverage and as much of a win as we could secure before the paratransit rides arrives. So we called it a victory and chanted some more, yeah you know what it was..."The people united will never be defeated!"
The best thing about this action is the AP covered us with a photographer too, so the story is going out across the nation...and I just got word CNN included our action in a story. The other best thing about the action was the people who turned out and worked to get this organized. The energy was fantastic! Amazing! The best thing to happen to feminist/disability rights in a long, freakin' time!

Local Chicago TV news coverage, complete with video of the protestors.

Bush won't renominate anti-disability rights judge for appeals court

The Associated Press reports that:

In a concession to the Senate's new Democratic majority, President Bush won't rename four controversial federal appeals court nominees whose confirmations were blocked last year, Republican officials said last week.

William Haynes, William G. Myers III and Michael Wallace all asked to have their appointments withdrawn, these officials said. Judge Terrence Boyle was informed of the White House's decision, according to an ally.

In 2005, Boyle, a federal judge in North Carolina, was noted by the People for the American Way as being unfit for promotion to the federal Court of Appeals for several reasons. From the PFAW website:

Judge Boyle’s record is troubling in at least two distinct ways. First, he has been reversed frequently by the Fourth Circuit, one of the most conservative appeals courts in the entire country. In fact, he has been reversed considerably more frequently than has the average district court judge in the Fourth Circuit and around the country. He has also been reversed an average of more than twice as often per year as any other federal district court judge President Bush has nominated to the appellate bench. Such a high record of reversals, especially considering that Judge Boyle has frequently been reversed for making the same or similar errors, calls into question his ability as a jurist. And his apparent effort to obscure his record of reversals in his answers under oath to questions from the Senate Judiciary Committee, as detailed below, raises extremely serious concerns.

Second, Judge Boyle’s record reveals a troubling history of espousing a damaging neo-federalist philosophy from the bench that is particularly harmful to civil rights. He has been very aggressive in supporting “states’ rights” views in cases that criticize Congress’s authority to protect individuals from discrimination committed by state agencies. Moreover, a number of his decisions have been specifically hostile to civil rights, including with respect to cases brought by people with disabilities as well as in redistricting and race and sex discrimination cases, many of which have been reversed. And he has been reversed several times in important cases concerning campaign finance.

Boyle's troubling record includes the case of the United States v. North Carolina, an employment discrimination case about the state's gender bias in hiring correctional officers at men's prisons. Among the many conclusions Boyle made that basically rejected the federal right to apply Title VII to a state, he declared that North Carolina's "culture" was a valid reason for disparate employment practices.

And Boyle's hostility toward the ADA has been well documented by rulings hostile to both the federal law and disabled persons' civil rights. In Pierce v. King, Boyle denied the ADA applies to state prisons because they do not have a "substantial effect" on interstate commerce. The plaintiff in the case filed an ADA employment discrimination case against NC because the state prison did not offer him accommodations for prison work that could lead to time off for good behavior. Boyle went further, saying that Congress had no authority at all to apply the ADA to states because, unlike other civil rights laws, the ADA seeks "special" and not "equal" treatment.

While the Fourth Circuit upheld Boyle's decision in the Pierce case, it was vacated when the Supreme Court unanimously ruled on a similar Pennsylvania case, Pennsylvania Department of Corrections v. Yeskey. That case addressed the discrimination of a disabled prisoner's ineligibility for an inaccessible "Motivational Boot Camp" for first-time offenders that significantly shortens a prisoner's time behind bars. Even Justice Scalia, who wrote the opinion, asserted that “the plain text of Title II of the ADA unambiguously extends to state prison inmates.” The broader issue of Congress' power to apply the ADA to the states was not addressed.

In Brown v. North Carolina Division of Motor Vehicles, disabled North Carolinans sued against what was basically a tax on disability, where disabled parking permits required payment of a fee not imposed on nondisabled citizens. Again, Boyle used the opportunity to declare the ADA special rather than equal treatment under the law, and even declared disabled people to not be a legitimate group insofar as protection from discrimination is concerned.

The PFAW report on Boyle continues:

The Supreme Court has repudiated Boyle’s theories even in a decision limiting individuals’ rights under the ADA. In Board of Trustees of the Univ. of Ala. v. Garrett, 531 U.S. 356 (2001), the Court ruled 5-4 that individuals could not sue states for damages under Title I of the ADA because of insufficient evidence of state discrimination against the disabled and because the remedy was not congruent and proportional to the violation. But nowhere did the majority suggest that legislation pursuant to the Fourteenth Amendment must be limited to discrimination based on race, alienage, national origin or gender, and nowhere did the Court suggest that states cannot be required to comply with the ADA as Boyle had ruled. To the contrary, even the court majority specifically recognized that while damages were not available, Title I of the ADA “still prescribes standards applicable to the states” which can be enforced in lawsuits “for injunctive relief,” directly contrary to Boyle’s view. Id. at 374, n. 9. And in Tennessee v. Lane, 124 S.Ct. 1978 (2004), the Court ruled that even money damages may be available for some violations of Title II of the ADA. Boyle’s radical “states’ rights” view goes far beyond even the most conservative justices on the Supreme Court and would effectively dismantle the ADA as applied to state government agencies.

Note that last sentence above to understand exactly who Bush has been nominating to federal positions: Boyle’s radical “states’ rights” view goes far beyond even the most conservative justices on the Supreme Court and would effectively dismantle the ADA as applied to state government agencies.

In Williams v. Avent, Inc., Boyle gave summary judgment against a plaintiff claiming she was fired instead of being given reasonable accommodation for a back injury that minimized her ability to lift much weight. The Fourth Circuit spanked Boyle in its discussion of "reasonable accommodation" under appeal. The description of that judgment's criticism of Boyle is worthy of reading as presented on page 20 of the PFAW .pdf file -- you'll need to scroll down to the 20th page to see it.

But there's more. On environmental racism and religious discrimination Boyle also denied the state was culpable for discrimination. The Fourth Circuit has also reversed several decisions by Boyle on redistricting cases where he consistently favored white plaintiff voters. On one occasion, Boyle issued an opinion on a case he was not even assigned to -- before the assigned judge ever heard arguments.

Finally, on federal campaign finance laws, Boyle has sided with local anti-abortion organizations against the FEC. The Fourth Circuit did reverse.

Boyle was the only one of the four judges who Bush will apparently not be renominating that did not withdraw himself from consideration. And Bush's decision is only prompted by the clear opposition he will face from a Democratic Congress. This is a direct effect of our vote, though only time will tell if Bush's next nominations are any better on civil rights for disabled folks.

Disability bloggers quoted on CNN

Earlier this week, David at Growing up with a Disability, Penny of Disability Studies, Temple U., and Nufsaid at Ramblings were noted by CNN for their blogging against the Ashley Treatment from their perspectives of personal experience. I believe I've linked to my friends' writings on this before, but it's so good to see them as part of the national debate. The CNN article here.

Fun has now been penciled into the schedule -- Pass it on

Therefore, be it resolved that January 19th, befittingly a Friday shall be Radical Fun Day.

On occupation

I've been putting off writing about this for many weeks now because I wanted to express the connections between disability and war and oppression and civil unrest in some intellectual and compelling fashion, but really, what's more compelling or obvious than the fact that war always and inevitably causes death and disability? And oppressed people who fight for their humanity become more disabled in greater numbers when their oppressors try to maintain control.

I wanted to talk about the connections between my pet topic here of disability rights and Brownfemipower's writing on indigenous rights and how they intersect, but really, they are one and the same. Sometimes disability arises in specific interesting ways through the topics BFP covers, but it's really present in every image and word.

Here's an example in a four-minute video intro to a movie.

Screen all pregnancies

An article in The New York Times reports that the American College of Obstetricians and Gynecologists now recommends that all pregnant women, regardless of age, be offered screening for Down Syndrome. This is a change from offering screening primarily to pregnant women age 35 and older, and while the new guidelines are prompted partly by technology that makes early screening less dangerous to the fetus, the change also reflects what can only be described as a more comfortable relationship with the eugenic tendencies of prenatal screening to "screen out" flawed fetuses.

From the article:

In explaining the new recommendation, several physicians said the cutoff age of 35 had always been somewhat arbitrary. “Many women are unhappy with it, because it doesn’t mean anything to them; it’s kind of being put upon them,” said Dr. James Goldberg, a former chairman of the obstetrics college’s committee on genetics, who helped develop the new guidelines.

For example, Dr. Goldberg said, a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples “losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.”

As I understand it, the old age-35 policy was based on balancing the concern of miscarriage of any fetus to the statistical probability of a woman giving birth to a child with Down Syndrome. As stated explicitly above by Dr. Goldberg, that balance is perceived to be shifting significantly enough to encourage wider screening practices. Implicit in his statement is the notion that a positive test result for Down Syndrome is alleviated with abortion, otherwise the risk would not be worth it.

Significantly, the NYT article does not associate this medical policy with societal perceptions of or supports (or lack of) for people with Down Syndrome. It does not recognize through further interview or research that women receiving a positive screening get significant pressure by both the medical community and society at large to abort fetuses with this largely nonfatal and highly variable condition. While the changing policy may provide more women with more information about their pregnancies, it will not provide that information in full cultural context and will not, apparently, include guidelines for how to best decide what to do with that information.

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On a separate note: The website for the medical organization issuing these guidelines reveals that uterine transplants are just around the corner.

FRIDA protests Ashley Treatment at AMA tomorrow

From the press release:

At 1 p.m. on Thursday, January 11, Feminist Response in Disability Activism (FRIDA), with the support of other disability groups, will stage an “Ashley Treatment” demonstration at the national headquarters of the American Medical Association (AMA) in Chicago at 515 N. State Street.

FRIDA will demand that the AMA start practicing real ethical accountability and dialogue with the disability community. The action is in response to the AMA’s sanction of the“Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case.This AMA-owned journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.

People with disabilities and families nationwide have reacted with outrage to the drastic medical “solution” to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the “Ashley Treatment” was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.

Ana Mercado of FRIDA notes, “Our bodies really are the battlegrounds on which ethics debates are fought.” FRIDA seeks to protect our bodies from having to become battlegrounds in the first place. The issue at hand is not our bodies, but the choices that other people make for our bodies.

FRIDA is a group of radicalized women with disabilities representing ourselves and fighting for freedom for our bodies. FRIDA is supported in this action by Chicago ADAPT, the national ADAPT community, Not Dead Yet and Advance Youth Leadership Power (AYLP).

Once more for 2006

Inclusion Daily Express lists the top disability rights news stories in the U.S. for 2006.

Less obvious stories about disability rights that carry into 2007 are the Medicare Part D drug plan and the war in Iraq.

Like a sieve, only not so much

I had that ABG draw this morning, as scheduled, to determine if recent dizziness is caused by my ventilator settings or something else. That went well. An RT I'm acquainted with did it cautiously but easily and with very minimal pain. It had to be done by her in the local hospital rather than the adjoining clinic because, well, I don't know. Fear of arteries, I guess. But it was good to see her (except for the "aww, look at poor you on the vent" part) and tell her I've felt very healthy and appropriately-oxygenated or whatever since I got the hole in my neck and all.

For reasons possibly due to Gimp Compound breakdowns in communication, I also had an appointment for a regular blood draw to examine my levels of potassium, magnesium, and other yummy -esiums that were dangerously low a year ago. They were checked six weeks ago and I've been choking down lots of bananas and potatoes and other starchy colorless joys since then because those levels were only borderline acceptable. If French fries qualified as hot and greasy little mediums for the -esiums, this dietary addendum would be more fun. If I ever did get a thrill from a banana, that joy was killed last year when I was eating two each day for months to get the potassium up.

The ABG was what I really thought I needed, but I went along with this extra blood draw because, well, when six people are involved with arranging your clinic visit and you wish to live in harmony amongst them, what's a little poke with a needle. And maybe I could ease off on the bananas if all went especially well, right?

Things looked worrisome when the clinic receptionist said, "Hmm, this appointment was for yesterday. Have a seat in the central waiting room and we'll see what we can do." See what I mean about harmony at the Gimp Compound? Which of us screwed that up? Shhh, never mind.

I didn't wait long to see the Woman-Masquerading-as-a-Phlebotomist. I spent that time listening to the sick dull ache of my right inside wrist. Those nerves around arteries know how to discourage activity in their territory. I knew it wouldn't last too long, but it's a uniquely-flavored pain. I once had an RT take an ABG without me feeling the stick at all, which shouldn't be physically possible, but I enjoy contemplating the perversity and competence of that moment from time to time.

When called upon in the clinic waiting room, I did everything I could for the WMAAP. I told her past successes in springing healthy leaks in me usually involved the "butterfly needle," tiny enough to match my little veins. I sent her confidence vibes. I sat calmly while she dug around in the crook of my left elbow, the edge of my left wrist, and had a friend dig around the top of my right hand.

Then she pronounced me too dehydrated to bleed and told me to go away and come again another day.

No, really.

In the many hundreds of blood draws I've had in 38 years -- including some very unpleasant situations when I was actually sick and dehydrated -- individuals have sweated, apologized and passed the needle off to colleagues, but no one has ever told me it was not possible to make me bleed.

"You have no available blood today. Sorry. Go home."

Actually, since I had gotten the ABG I believed was important, and we had reached the limits of my commitment to family harmony, I was prepared to tell them to back away with their needles anyway. But still.

The pain from the ABG has abated almost entirely now and there's just the most minute sensation in the nerves to remind me that anything happened there at all. The other needle holes in my hands and arms hurt and are bruised blue. I did get results of my ABG and though I haven't yet talked to my primary, apparently the numbers look good.

I wish I'd had the chance to see my doctor's face when all this occurred with the WMAAP. She sometimes surprises me with hilarious breaks from her stoic, thoughtful professionalism, and I'd like to have seen which way it would go today. And who she would have found to get the job done, because she would have found someone or elected herself.

In the meantime, more bananas.