Molly Ivins, RIP

A smart outspoken woman, she will be sorely missed. A reminder of what she gave us:

"What you need is sustained outrage...there's far too much unthinking respect given to authority."

"I believe that ignorance is the root of all evil. And that no one knows the truth."

"It is possible to read the history of this country as one long struggle to extend the liberties established in our Constitution to everyone in America."

"The United States of America is still run by its citizens. The government works for us. Rank imperialism and warmongering are not American traditions or values. We do not need to dominate the world. We want and need to work with other nations. We want to find solutions other than killing people. Not in our name, not with our money, not with our children's blood."

"There is one area in which I think Paglia and I would agree that politically correct feminism has produced a noticeable inequity. Nowadays, when a woman behaves in a hysterical and disagreeable fashion, we say, 'Poor dear, it's probably PMS.' Whereas, if a man behaves in a hysterical and disagreeable fashion, we say, 'What an asshole.' Let me leap to correct this unfairness by saying of Paglia, Sheesh, what an asshole." [Molly Ivins about Camille Paglia]

from her last column, January 11, 2007: "We are the people who run this country. We are the deciders. And every single day, every single one of us needs to step outside and take some action to help stop this war. Raise hell. Think of something to make the ridiculous look ridiculous. Make our troops know we're for them and trying to get them out of there."

Midweek slumgullion #26

Thought-provoking reads from across the pond, courtesy of Ouch!:

From the New Statesman: "Funny peculiar" -- Mat Fraser on disability and what is funny.

The Guardian: "I won't be happy until I lose my legs" -- A woman tellls of her lifelong desire to be a double-amputee.

The disabled and Wii: An open letter to Nintendo -- I've wondered if the new gaming system would or would not be an opportunity for exercise for the involuntarily sedentary, or anyone whose athletic options are limited. The comments are interesting.

Eyes on whose prize, part 2

It was during the transphobia/delink Twisty debates across feminist bloglandia last December that Kactus at Superbabymama happened to note that she'd added this blog and several others to her blogroll. In the comment discussion that followed, an anonymous commenter noted with some resignation that The Gimp Parade links to Heart at Women's Space/Margins, the radical feminist blogging community (if there is one) for several of the women who expressed such hateful transphobia on that ugly I Blame the Patriarchy thread.

My blogroll has since erased itself and I've been slowly adding back what I can remember, but at that time I tried to express whatever strategy it is I've employed for organizing my blogroll. This wouldn't be so important, except that I consider my blogroll the best, most exciting part of this blog because when I began this site in 2004 there weren't so many disability rights bloggers around. Check it out now -- the gimp blog section is joyfully unwieldy.

Here's that commentary on my blogrolling strategy:

I currently have links to both IBTP and Heart's blog, though I've thought many times in the past few months about deleting the link to Twisty. The fact that I just haven't taken the time to tweeze through my blogroll in a long time, despite adding new links I'm excited about, is one reason Twisty is still there.

Another reason she remains linked at my blog sidebar is because my blogrolling policy in so fuzzy and arbitrary in many ways already: it's divided into the crips and the nondisabled, national magazines about disability are mixed in with very small-audience disabled bloggers, Go Fug Yourself is right there in the list with Women's Space.

A few disability bloggers I seriously disagree with are listed simply because disability rights discussions of any kind and disabled bloggers are, frankly, hard to find, not sexy enough to be popular and we need to network and learn from our diverse experiences as disabled folks, if we can.

The final reason Twisty is still blogrolled is because of her recurring use of "fucktard" and some periodic objections to it in comments when she does use it. It's not news to me that all feminists are not my friends, with regard to disability politics, and I don't want to be oblivious of discussions that concern my interests. I have a hard time separating the outright offensive from the clueless, when both may be a part of the feminist movement that I, too, consider myself connected too. Ignorance on disability as it relates to feminism (or even generally) is just too heartbreakingly common. I confess I don't know where to draw the blogrolling line.

Heart's blog stays on my blogroll. I don't find her to be particularly knowledgeable about disability rights and politics, but in many other ways I believe her to be a great resource and committed to a level of diversity found on few white, nondisabled feminist blogs.

I don't mean any of the above to excuse the hate spewed on trans folk in the comments at IBTP. I would like to point out though, that despite Twisty's smart-ass comment in her own out-of-control thread, it's entirely possible that her recent health issues kept her offline for a few days and she didn't want to invoke another round of tiresome sympathy by mentioning it. Instead of being the sad cancer patient, she was "controversial" and mean-spirited instead. I believe that's within the realm of behavior she might display. Just sayin'.

Regarding trans hate and radical feminism specifically, I've been trying to connect the dots to ableism and write about it for quite a while now, but haven't been able to put what I know is part of the same issue of feminism, essentialism, bodily truths, and social constructionism together from a disability perspective just yet. I'm so glad Brownfemipower mentioned disabled women in her discussion if this. It is connected.

Aside from the obnoxious use of "tweeze" and the clearly inaccurate characterization of Women's Space being "committed to a level of diversity found on few white, nondisabled feminist blogs" I stand by my rationale. It'd be more accurate to say that Women's Space touches on diverse issues of difference concerning women more regularly than many other feminist spaces, but that's not the same as full commitment, particularly if you include the atmosphere created by regular participants over there.

Anonymous' response to me:

I used to read your blog every post. It hurt me so much though when I finally got around to exploring your site more. For me it's like, I don't know why you've linked to so-and-so. Is it because that's what you truly feel? Are you just trying to provide a wide variety of viewpoints? I don't know.

I do know it scares the hell out of me when I see Margins or Questioning Transgender or Genderville or some other hate site. Even if it's not a direct link.

I'm sure you can somewhat sympathize because ableist sites are just a dime a dozen because so few people even realize it exists. Otherwise good sites, too. Nice folk. Just not aware.

I just want you to know that I know you're doing good work. You've helped me out more than once. But I just can't visit your site anymore because I'm afraid. That's my issue. I'm oversensitive.

Well, Anonymous ain't oversensitive, and blogroll strategy aside, this has really made me think hard since then about my reactions to hate speech, generally, and my disposition against the ableism I encounter.

At the time I responded with this:

The hatred and fear people have about disability and disabled folks is most often expressed through silence or invisibility. In public policy it has historically been through institutionalizing disabled people and making us invisible, but the average person/blogger/commenter simply ignores us instead of raging out loud as is done with hate speech and transphobia.

As a blogroll owner, how do I delink to protest hatred or fear of people like myself if it's expressed by ignoring disabled issues and people? If the common factor of ignorance and cluelessness represents itself as silence too, who do I decide to give up on, in terms of disability issues? And since I do believe transphobia is related to fear and hatred of disabled folks, I don't imagine that where one is expressed the other doesn't also exist. The more I learn, the more I'm sure this is true.

If I made the practice of discounting disabled people's opinions a criteria for who is delinked from my site, I'd have had to remove several of my favorite mainstream feminist spaces in these weeks since Ashley X's story has hit international news. Even if I limited my delisting to blogs where parents of disabled children who disagree with the Ashley Treatment were dismissed out-of-hand, there'd be significant changes.

But back to what's been weighing on me about my own reactions to transphobia, ableism, racism, and other obvious signs of hatred of difference.

What I'd call my formative years as a person with a disability and the need for a wheelchair began in 1983 when I was 15. The Americans with Disabilities Act wasn't passed until 1990, so as I learned about disability in America, I learned that I could not ever count on physical access to public places. The Rehab Act of 1973 was meant to create access in government buildings, but as a high schooler I learned that I could never take it for granted that the pizza joint, movie theater, concert hall, museum, or restaurant my family or friends and I headed to on any given day would actually be a place I could enter. If I could enter, there was still the real likelihood that the outing would end abruptly when I needed to pee and could not access the public restrooms.

Spontaneity increased the likelihood that right there at the front door of the inaccessible building we'd anticipated entering, I and whomever I was with would have to turn away and find someplace else we could go. Calling ahead to ask about accessibility rarely changed the outcome, since nondisabled workers frequently failed to remember some stairs or that the restroom door was just 19 inches wide and in the basement anyway. Sometimes I could be carried inside. Sometimes we could use the kitchen entrance. In some movie theaters lacking dedicated places for wheelchair users to park, I could wedge in next to the smelly garbage can. Once at a Georgetown bar, my friends and I walked the dark and gummy back alley to a delivery ramp that led directly into the cozy back room but the ramp was at a 45-degree slant requiring several of my friends to push my scooter while I accelerated, so I arrived amongst the dinner tables like a bullet shot out of a gun. I'd been in the front of the bar -- an entryway with tables and too-high stools -- and basically been told to leave and try the back door.

When I wasn't alone, there was often some way to make it all work, but only rarely did I ever go anywhere that the building just allowed me in. And there's no immediate recourse to structural inaccessibility. No amount of argument with the manager widens the bathroom stall door or eliminates the need for an elevator. No phonecall or letter made the next day alleviates the problem, either. Pre-ADA, no one was compelled to fix access anyway. They could legally shrug and turn away -- and some did.

There were occasions when the event we'd hoped to attend was prepaid, important, or too exciting for everyone with me to miss, and so I went home or waited somewhere alone while others climbed the stairs without me. I did and do have dedicated friends. My best friend in high school once held me piggy-back through an entire concert so that I could see the band instead of sitting in my chair looking at other people's butts. My brother and father carried me more than once into the melee of the Indianapolis 500, blocks away from our car and up into the bleachers without my wheelchair. Schoolmates carried me on and off the commuter train for the history class fieldtrip into Chicago to see Brian Dennehy perform the play Galileo.

I had a happy and remarkably integrated adolescence because of the love and loyalty of the people around me, but that level of daily exclusion, that impenetrable kind of exclusion that is only fixed with sledgehammers and new elevators IF someone who owned the building decided someday to bother (not on my account, and not when I was waiting at the door) did its part to shape who I am and how I react to discrimination and disregard. I learned emotional ambivalence, the skill of being water off the duck's back, so that I could meet this isolating uncertainty every day.

It's been my defense mechanism, to shrug and say, "oh well." It's sometimes been accompanied by activism and calls demanding access, but mostly only after returning home in defeat. I don't know how other people with disabilities have coped. I don't know how people of color during Jim Crow handled their rage about the back of the bus and the separate drinking fountains, though there is something to be said for being able to get on the bus. I do know something of how women handle the rampant sexism in our culture. These are all relatively quiet violences to the soul.

When the hatred is clearly spoken or made physical, those are different more urgent situations to address. And I'm unfamiliar with them. I spent my youth anesthetizing myself just enough to stand the daily less-violent silent injustices, and I think it means I tend to underact when the hatred is more open. Open hatred is rarely directed at me, because I'm straight, white, upper-middle-class background, educated, and because ableism usually looks different than the racism or transphobia that leads to sudden violence and death. Which isn't to say that the nondisabled person who states, "I'd rather be dead than live like you do," isn't speaking hate -- but almost nobody calls it that and we've all been taught that such a statement is personal preference rather than code for "your life isn't worth as much as mine."

I think my reactions to hatred have sometimes puzzled my friends, the radical feminists ready for a fight, the women of color, lesbian, gay and transgender folk who live with their families under threat of much quicker physical violence than I ever have. I see that and know I need to change and join the greater fight for them and myself a bit differently. How much has the ADA actually changed and how much of my defenses can I afford to dismantle? Does there really need to be a balance between helping myself stay sane and reacting appropriately? It shouldn't be that way.

One of the perks. . .

of having a disability -- some specific impairment (take your pick) -- is that you get to say original, thought-provoking things like this:

I love my feet. I have always loved my feet, no matter how many or which ones I had at any given moment. . .

Read the whole thing, by Sara at Moving Right Along.

Eyes on whose prize

I want to speak my own truth, and honor the words of others when they speak theirs. I want to be an ally, but I don't want to get in the way. I want to make the connections between my experiences and other people's in ways that broaden my understanding and avoid the narrowing of concerns into little camps of people struggling for recognition. I want to interject disability issues into conversations where they seem unspoken or invisible, and I don't want to feel selfish for doing it. And I want other people to do the same, so I can see where I've centered my own concerns and marginalized someone else's. I want to see how the whole big mess fits together.

Wanting so much usually keeps me rather quiet, outside of the small community of disability blogs that have become a comfort zone for me. And the comfort has been needed lately when the Ashley Treatment -- a story so fundamentally about attitudes on bodily and mental difference and disability -- continues to be debated everywhere. Only on sites dedicated to bodily and mental difference specifically, have I seen any real re-centering of that debate away from ableist tendencies to make allowances for behavior or words that dehumanize the less than normal body. I've felt myself turning in protectively to my dis or dis-cool friends: Penny, Connie and Steve, WCD, Amanda, I'mFunnyToo, David. . . .

It's no coincidence I feel safest among those who also have an obvious stake in whether or not physical or mental ability is used to determine how we treat people. It's no coincidence that our widely disparate experiences of disability arrive at the same political sympathies. And I suppose it's no coincidence that when we're discounted as irrelevant or fanatical about the topic at hand, we're all discounted together.

And today, Kevin at Slant Truth reminds me that this is how the system of oppressions works, and that it's happening elsewhere and isolation isn't the right response:

I will come out proud and say that I am supportive of the Trans community and will work from here on out for their full personhood. The hate I have seen lately is beyond my comprehension. I reject it all. Fuck you if you aren’t down.

Oh, I've more to say on this, now that I've resolved to begin. But I wanted to get this much out there now.

Holocaust memorial day

Today is the 62nd anniversary of the liberation of the Auschwitz death camp of WWII and an international day of remembrance of the Holocaust. At a ceremony in Newcastle, UK, where the six million Jews who were murdered were remembered:

Chief Rabbi Sir Jonathan Sacks called on people to remember the other victims of the Holocaust, including gay people, gypsies, the mentally handicapped and the physically disabled.

He emphasised this year's theme of The Dignity of Difference, saying: "At the heart of evil is dislike of the unlike, the fear of difference, the belief that because you are not like me you are a threat to me. Fear becomes hate and hate begets violence and violence turns to murder and murder becomes the attempted annihilation of a whole group.

"The great human challenge is to honour what we have in common while respecting what makes us different because if we had nothing in common we would be unable to communicate, and if we had everything in common we would have nothing to say. If we do not learn the lessons of the past then I fear for our future."

On being a good girl

Posted to the latest Disability Carnival at DisStudies, Temple U, Dave Hingsburger of Chewing the Fat writes about "The Good Girl" and the perils of being trained to be polite and follow the rules. He begins:

Several times a year I'm asked to do an abuse prevention workshop for people with disabilities. As part of that workshop we do a role play wherein Joe (who assists me in doing this workshop) plays a staff and in that role asks someone with a disability, "How was your day." The person with a disability responds, "I don't want to talk about it." Then the question is asked of the group, "What would a good staff do next?" The answer we are looking for is some version of, "The staff would say, 'That's OK you don't have to talk about it now. We can talk about it later if you want."

This role play is informative to me - it lets me know what kind of world that people with disabilities live in, how they see 'good' staff. I've had all sorts of responses to this question, "Put her in the side room," "Take supper away from him," "Lock him outside," "Don't let her use the phone," "Put her on the floor." Shocking, but a glimpse into how some staff use power in their relationship to those in care.

But the teenage woman with Down Syndrome that he gets to assist in the roleplay has clearly been taught that "politeness" and her need to be "a good girl" trumps any situation where she might be unhappy, dissatisfied or abused. She confides that she herself would never complain about someone treating her badly because that would be impolite. And she becomes afraid that she's been displeasing when Hingsburger points out she is working at cross-purposes with the basic message of the workshop and roleplay:

During the rest of the workshop she never again volunteered for a role play, to assist in any way. She just sat with her hands in her lap and she smiled at me. That pasted on Down Syndrome smile that I understood for the first time (really) had nothing to do with Down Syndrome it had to do with being down trodden. She was entirely 'nice' for the rest of the time we were together.

She left the workshop by coming up to me and apologizing again. "I'm a good girl," she said as she walked away from me.

This young woman had been taught the primary importance of not being troublesome, not needing, not complaining, being "happy" at all times, and not breaking the rules that cast her as the recipient of other people's good will. The pressure to please is relevant to feminist politics as well as the lessons of safety and autonomy that parents, teachers and guardians should consider for children, disabled or not. But this true example of the societal pressures brought to bear on developmentally disabled individuals -- and likely girls and women, in particular -- illustrates the complexities of the meaning of consent for those whom society implicitly denies the right to dissent.

When those of us without developmental, intellectual or cognitive disabilities take it upon ourselves to judge if others have the capacity to make decisions for themselves, what criteria are used? Do we foster their decision-making skills in the same way we might for nondisabled-but-developing minds of children that we plan to give full autonomy to eventually? Do we allow them to make mistakes and grow from them? Do we offer them a sense of self that is worthy of personal preferences, convictions and enough bodily autonomy to be safe from abuse they can recognize, or do we limit their available responses? Do we let the idea of their mental impairments limit our own sense of their personhood and the entitlements to all which that means?

How many people who have been trained, taught and brainwashed to believe that being considered "good" is more important than their own safety have subsequently been determined incapable of making their own decisions and incapable of consent?

Saturday Slumgullion #25

Peter Singer's op-ed on Ashley X: A Convenient Truth.

One story of ADA compliance failures and a school district in Charlottesville, NC.

Autistic students will be forced to testify, or at least take the witness stand, against their alleged abuser -- Kathleen Garrett, a special ed teacher, is charged with abuse that knocked out one child's teeth. Attila the Mom comments here.

A detailed article on the trials of getting employed -- Lawyers With Disabilities Say Obstacles, Stereotypes Persist.

Feministing interviews disability activist Laura Hershey.

Amanda of Ballastexistenz has a really great 8 minute video called In My Language, dedicated to Ashley X. I think it is fairly accessible to those with either sight or hearing impairments, she shows us through singing and rhythym how she communicates with her environment, and when she speaks using an electronic voice machine, she also provides subtitles. Update: Partial written transcript here. Discussion at Metafilter here.

The investigative reporting on conditions in Georgia state mental hospitals continues. An excerpt from part 3:

He was choked until his last breath. Blood pooled beneath his skin from two wounds to the back of his head. His body lay in an ignominious sprawl: facedown on the floor of a state psychiatric hospital.

Georgia's chief medical examiner ruled his death a homicide. So did a coroner's jury.

Yet no one ever faced criminal charges for killing Rickey Dean Wingo. No one was even disciplined.

In Georgia's state mental hospitals, even the most egregious cases involving employees — patient deaths, assaults, beatings — usually result in penalties no harsher than firing, and sometimes no punishment at all, an investigation by The Atlanta Journal-Constitution shows.

Mike Ervin writes on "15 years of ADA filled with setbacks, victories" for the Progressive Media Project.

Tiny Cat Pants comments on what I'm Funny Too has to say about liberals and disability issues.

Disability Carnival #7 is up at Penny's!

The theme is Disability History and Disability in the Arts, so rock on over and enjoy!

Flying rodents of unusual size

Last week, I described the pre-dinner events of my 20th birthday. And the banana balloon capture caper.

Dinner itself was fun too. Marian, Anne, Deb and I walked to the restaurant -- two scooters, a power wheelchair and one bi-ped skipping along to keep up. Traveling in a pack of wheelchairs over familiar sidewalk terrain is something of an art. The unspoken rule is that everyone paces themselves to the slowest chair (or the walker) but allows for speed changes and swerves around uneven pieces of pavement. In neighborhoods around campus where we were all familiar with the potholes and seizmic cracks in the sidewalks, a simple trip together somewhere sometimes felt like an intricate dance -- slowing, speeding, weaving sideways to avoid a crumbled edge of cement, zipping closer so we could keep up converation. We'd anticipate the sudden stop and lurch of each other's chairs to navigate smoothly. Well, mostly. There were collisions now and then.

I still didn't know where we were going for my surprise dinner, though briefly I expected it might be McDonald's because of the perverse humor of my friends. We ended up at Monty's in downtown Tempe. The main strip has changed a lot since those days, with many new restaurants beyond the means of the local students, but Monty's was one of the few fine-dining experiences within walking distance of the dorms back then, and I'd never been inside.

Possibly, the highlight of the evening was when Deb stepped up to the hostess and announced our arrival, then added "we'll just need one chair." Our little parade through the many rooms of the restaurant was fun, too. Oh, the expressions as we rolled by -- one, two chairs, three. The public spectacle of disability is always more fun when shared. To often it's experienced alone and feels alienating instead.

I had the famous barbeque ribs for dinner -- a splurge. And a bottle of wine, then Irish coffee with dessert. Yes, alcohol at a restaurant on my 20th birthday. I was the only one underage but sometimes gimpiness freaks servers out so much you don't get carded. There are perks now and then.

Anyway, dinner was delicious and I drove out of the place with a good buzz. We all did, which I suppose explains our detour under city hall on the way home. Tempe's city hall building is an impressive bit of architecture -- it's an inverted pyramid with large slabs of window covering the slanted sides. The "point" of the pyramid is underground and is reached by long fabulous ramps that go "WHEEEEEEE!" When drunk.

It was dark down there after-hours, which accentuated the sense of speed. Anne's scooter lacked the stiff automatic braking on slopes, and she shrieked with laughter. The buzz of our power chairs and voices echoed off locked office doors and through the leafy atrium under the building"s bulk. And there was another whirring screeching noise we couldn't identify as we raced up the ramp and plunged down it again. Deb leapt onto benches. More shrieking laughter. And that other whirring and shrieking.

'What is that?"

Marian gasped. "BATS!"

We'd disturbed their nighttime playground and they were swooping around us in the darkness. The echoing noise of our chairs frightened them, perhaps. Now we all shrieked in earnest, ducking instinctually, as we sped up the ramp and back into the sultry October night. As it turns out, scary bats are hilarious when you're drunk.

Back at the dorm, the room I shared with Marian had been toilet-papered extensively. I felt special. And that banana-shaped balloon was there for the upcoming adventure.

Things that crack me up, #17

Behind some Google searches, there is mystery. This search led here:

"maybe i needed 70 years of life to get ready for a woman like helen"

Various NPR disability stories

Label falls short for those with mental retardation by Joseph Shapiro. Excerpt:

The term mental retardation was supposed to be an improvement. But the fight over language keeps going on. That becomes clear if you ask those with mental retardation what they think about that description.

"I hate that word — mental retardation," says Thelma Greene of Washington, D.C. "I wish they would change that one, because it sounds so institutional, like you can't do nothing for yourself and you're depending on somebody else to do everything, from putting on all your clothes down to your shoes. And that's not right."

"Retardation is not the good word," Anthony Vessels, also of Washington, says in agreement.

"I never did like that word 'retardation' or 'mental retardation,' adds Victor Robinson. "Because everyone has called people names about that. And no, none of my friends did like that name or any other name, being called 'stupid, dumb.' And it hurts a person very much."

"Poster Child" Emily Rapp about her life and her book, Poster Child: A Memoir

A look at an autistic savant's brilliant mind from Talk of the Nation, about Daniel Tammet's memoir Born on a Blue Day.

Things that crack me up, #16

Well, not so much cracked up this time, as surprised by something I did not know:

Not only was John (Cougar) Mellencamp born with a mild form of spina bifida, but he was birthed in a windmill.

I know.

Jury duty update

My post from last September about being summoned for jury duty always gets a few Google hits per day, so I thought I'd provide an update.

I was required to call in to the courthouse once in October on a designated morning to see if I needed to come in that afternoon. The recorded message told me that my jury pool wasn't needed, but that I'd get another letter in the mail during my three-month on-call period if they needed me to check in again. That never happened, so presumably my brush with legal excitement has passed me by. That is all.

Radical Day of Fun

In preparation for my 20th birthday, my roommate and friend Marian warned me I was being taken out to dinner, so I should reserve that Saturday for mystery fun. Neither of us had any idea then that Marian would never get to wish me a happy 21st, so I'm doubly greatful my 20th was filled with such wacky fun.

Here's the conversation I had with Marian a couple days prior to the event:

Me: We're going out to dinner?

Marian: Mmm hmm.

Me: Where?

Marian: You don't get to know yet.

Me: Who's coming?

Marian: You, me, Anne and Deb.

Me: Is it a fancy place?

Marian: Ummm. Yup.

Me: Should I dress up?

Marian: I would.

Me: Should I wear hose?

Marian: God no! . . . Maybe when you get married.

***

When Saturday came, so had a package from my parents, and other friends came to hang out in the dorm room Marian and I shared while I opened that. This was the pre-party, and it was mellow but fun. It included the cake my parents arranged to be sent from a local bakery. Several people gave me toy or stuffed dinosaurs because of a misunderstanding that I was collecting them. The cutest ones remain with me as memories of those early years in college. Anne gave me a giant helium-filled banana-shaped balloon that said something about "bunches of fun."

Some days later the big banana's ribbon leash came loose and the balloon edged its way over to our oscillating fan. Afraid it would get sucked into the fan, Marian and I executed a rescue mission that sounds more like some bizarre drinking game, particularly since we decided on it while not entirely clothed. I forget what that part was all about.

Marian had a homemade "reacher" consisting of a dowel stick with an L-screw attached to one end. She skillfully used it to dress, run a washcloth over her face and dozens of other small tasks her juvenile rheumatoid arthritis made more difficult. Her stick was key to our banana-balloon rescue caper.

Here was the plan: If we turned the fan off, the balloon rose to the ceiling, completely out of our reach from our chairs. Turn the fan on and the big foil banana edged down behind the fan as though it might hurl itself into the whirling blades. One of us would drive up in front of the wind from the fan and bat the balloon downward and in front of the fan using Marian's stick. The challenge was then for that person to speedily reverse out of the way so the other could swoop in and reach for the balloon in the brief moment it dipped low enough to catch.

We were working with two electric wheelchairs (well, mine a scooter) and a dormroom floorspace of maybe ten-feet square, so half-naked, dowel-batting, chair-swooping and arm-lunging required teamwork and coordination not improved by giggling. I forget if we were sober or not, but in retrospect, probably not.

***

More on the birthday dinner itself tomorrow. I'm extending my radical fun through the weekend.

For other people's radical or drunken fun, check out the links at Sly Civilian.

Slumgullionish miscellanea (#24)

William Peace's "Protest from a bad cripple: The Ashley Treatment and the making of a pillow angel" in CounterPunch:

Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond. In my opinion there is no difference between myself and Ashley despite the great disparity in our intellectual abilities. If you doubt this let me relay one story from my childhood. In 1972 I was a 7th grade student at a Catholic school in New York. The school was not unusual but I was. I had a rare neurological condition that was beginning to take its toll on my ability to walk. Shortly after school started I vividly recall homework being handed out and the nun came over to me and said, “You no longer need to do homework because you are one of God’s special children”.

A thorough collection of the disability community's responses to The Ashley Treatment.

From NewsDay, Sen. Charles Schumer (D), of New York talks about the special difficulties faced by injured National Guardsmen and Reservists:

Disability claims filed by National Guardsmen and Reservists are denied at twice the rate of active duty troops, he said. Guardsmen and reservists in college sent for full-time training earn just $297 per month, while active duty soldiers earn more than $1,000, he said.

In addition, wounded guardsmen and reservists often must recuperate at medical facilities far from home, he said. They are tied to units scattered throughout the country.

The Guard and Reserves have been used more in the Iraq War than in any prior conflict. At one point, half of the deployed troops in Iraq were with the Guard or Reserves.

"They are risking the same amount of danger," said Schumer (D-N.Y.) at a news conference at Hofstra University Monday, surrounded by cadets with the school's ROTC program. "They should be given the same benefits."

The South Dakota Argus Leader reports on the unusual motions filed in the murder trial of deaf defendant Daphne Wright:

The lawyers requested the victim's friends and family be prohibited by the court from acting out or displaying emotion during the trial. They also requested the court not allow "gruesome or inflammatory photographs" from the crime.

Wright, 43, is accused of kidnapping, killing and dismembering Darlene VanderGiesen, 42, in February 2006. Wright and VanderGiesen were both deaf, which has become an issue in the court proceedings.

Prosecutors have indicated they will seek the death penalty if Wright is convicted on the charges she faces: murder and kidnapping.

But Wright's lawyers say that because she is deaf, it would be cruel to execute her.

And to my Malaysian friend who sent me a link about disability news there, I have lost that email. Please resend the info and other news in the future.

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.

__________________________________________

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.

More linkage on Ashley

Time magazine: "Pillow Angel Ethics, Part 2," Part 1 here.

DREDF statement (Disability Rights Education & Defense Fund)

Commentary at The Independent: "The moral line in medicine shifts once again."

Nufsaid at Ramblings: Mom of disabled son weighs in.

DreamMom: Parts 1 and 2 on the Ashley Treatment -- Another Mom of disabled child responds.

Brownfemipower at Women of Color -- Lengthy comments.

Women's Space/The Margins -- Again, long comment thread.

And with huge comment threads, Alas, A Blog: Here and here.

Did I miss someone? Add the link in comments.

Updated:

Sharon at The Voyage writes here and here.

Elmindreda of Random Reminiscing Ramblings writes "Dear Ableist."

Pants-wetting 12-year-old arrested for disorderly conduct

Incredibly, here's how the story ends:

After the arrest, police told her parents they could probably avoid paying a fine if they agreed to make the girl do community service.

HIV-gay bigotry, wrongful death and the ADA

Appalling and legally interesting. From GayCityNews:

Claude Green was driving his truck in Welch on June 21, 2005, with Billy Snead as a passenger, when he suddenly suffered heart failure. Snead was able to guide the truck to a stop and administer CPR, reviving Green who gasped for breath. While Snead continued to minister to Green, Chief Bowman arrived at the scene and physically pulled Snead away from Green, exclaiming that Green was HIV-positive.

Bowman called 911 for an ambulance and blocked Snead from attempting to resume attending to Green. When the ambulance arrived, Bowman told the emergency workers that Green was HIV-positive, which they recorded, but it appears that they attempted CPR while driving him to the hospital. Bowman also went to the hospital and informed the emergency staff there that Green was HIV-positive. Green died shortly after reaching the hospital from heart disease.

Green was not HIV-positive.

Note, first, that Green died in June of 2005. This case has been waiting judgment for a long time now.

What the federal judge ruled:

Judge Faber's analysis was lengthy, complicated by the fact that the U.S. Supreme Court has not definitely resolved all the relevant issues. He concluded that due process and equal protection claims resulting from the death of somebody because of civil rights violations committed by a government actor could be brought under federal civil rights statute, and furthermore that the Americans With Disabilities Act claim also survived to the extent it arose from denial of services to a person with a disability.

Green alleged that her son qualified as a person with a disability because Bowman wrongly perceived him to be HIV-positive.

Faber's opinion noted that there was no indication anywhere in the court record that administering CPR to an HIV-positive person would present any special risk of transmission, casting doubt on what would undoubtedly be the defendants' main theory of justification for Bowman's actions in blocking care for Green.

Significant issues remain to be sorted out in this litigation, but at this initial stage, Faber's ruling permits the case to go forward on the basis that the estate may have a valid federal civil rights claim against the city and Bowman for the way in which Green was treated on the day of his fatal heart attack.

Well, crap

The good news is the possibility of a collaborative book with son Jamie. I look forward to that.

Death of 14-year-old only tip of the iceberg of abuse

From the Atlanta Journal-Constitution, "A Hidden Shame: Death and Danger in Georgia's Mental Hospitals":

Alone in the darkness of a state mental hospital, Sarah Crider, 14, lay slowly dying.

She complained of stomach pain at 4:30 p.m. She vomited about 8:30. When the only physician on call at Georgia Regional Hospital/Atlanta came at 9:20, Sarah had vomited again, but the doctor did not examine her, medical records suggest. She threw up around midnight and once more about 2 a.m., this time a bloody substance that resembled coffee grounds. But hospital workers did not enter Sarah's room again until 6:15 a.m. By then, it was too late.

A few hours later, two hospital employees drove to Cobb County to tell Joyce Dobson, Sarah's grandmother. Dobson adored Sarah for all her complexities: artistic but troubled, challenging but comic. Now she could think only of two nights earlier, when she had last visited Sarah and heard another patient's haunting scream.

I hope nobody killed her, Dobson blurted out.

In fact, what happened to Sarah was beyond anything Dobson could have imagined.

Read the rest.

Still thinking on Ashley

I'm crossposting this comment of mine from a discussion I'm participating in elsewhere:

One thing I find so frustrating about the widespread discussion of the "Ashley Treatment" is the complete unwillingness by so many people to assess the parental decisions. Understandably, people are sympathetic to their situation and are rightly giving them some benefit of the doubt. But the decision-making process between medical professionals and parents of disabled kids is always really complex, always done on a steep learning curve, and always involves pressure from those medical experts that parents do not always have the experience to rationally assess. It's relevant that the parents' website expressly states that they did not have any doubts about this decision and want very much to offer and push this treatment for other children. That's an incredibly worrisome degree of certainty and salesmanship about a complex and murky ethical decision, if you ask me.

I could name a few less extreme but questionable ethical medical practices I was subject to as a child with a physical condition that intrigued the medical community my parents consulted beginning at the time of my birth. At the age of nine (same physical age as Ashley) I was examined in a medical boardroom by about 20 medical professionals who saw nothing problematic with me wearing only panties and walking around the boardroom table so that individuals could touch my muscles and discuss what they all saw in my body. There was technical debate and also discussions I completely understood about this or that failure of my muscles when I was asked to perform. A joke or two was made, probably as attempts to lighten the atmosphere, but the laughter is a distinct part of the unhappy memory that has stuck with me these past 30 years. A photographer took pictures that I was sure ended up on the newsmagazine show 20/20 a couple years later as falsely-labeled examples of anorexia. I doubt that was true, but it's always haunted me. I was a bright nine-year-old, but I didn't consent to those pictures of me in only my panties and I don't know who has seen them or where they ended up.

My parents can easily see now -- and even did in the confusion of that day -- that it was an inappropriate and harmful venue in which to give a child medical care, but they were desperate and hopeful and didn't know if the consequences of this ordeal would lead to some cure or treatment that, on balance, would make it worthwhile. They gritted their teeth and stuck it out, hoping for something useful to come of it. Lots of medical decisions are like that. It does not mean the parents should not be judged or culpable for what is decided. The ends do not jusitfy the means, especially when the ends are so completely unknown. And it seems telling and worrisome that Ashley's parents lack any self-reflective doubt about a clearly uncertain situation. It's dishonest about the dynamics, at the very least.

Mini-Slumgullion

An all non-Ashley version:

Connie at Planet of the Blind writes about trading up to get her husband Steve.

Amy Tenderich at Diabetes Mine writes on bravery and chicken-shittedness.

Go wish Bint Alshama at My Private Casbah a belated Happy 30th Birthday! She's also outlived her initial cancer diagnosis four years now and so there's two reasons to celebrate.

Because sometimes I miss him: Cutter John and The Starship Enterpoop.

Hmmm -- Updated

Oops. I was trying to update my template so that the labels function of the new Blogger would be available on the sidebar. It is now. In the process, I've lost my entire blogroll and other assortive stuff. Yes, there is supposedly a way to update your template without doing this, but it certainly wasn't clear to me until it was too late.

The blogroll has badly needed updating anyway, but I wasn't prepared to do it tonight. So, hopefully a new improved sidebar list will be back shortly.

If there's a link you think I should consider adding -- I am mainly interested in links to disability sites that discuss disability rights, disabled women, and the social aspects of living with a disability -- leave a comment here. Thanks.

Update: I've added part of my gimp blogroll back. If you used to be linked or know someone that was (or wasn't but should have been), remind me because I didn't have the list saved anywhere. As for the auxiliary blogroll of feminist blogs and other sites I kept my eye on, not all of it will return but I haven't decided exactly what that part of the reworked list will look like yet.

Ashley Treatment discussion at Pandagon

I regularly enjoy reading the feminist posts and discussions at Pandagon, but the recent coverage there of the story of Ashley X and the medical procedures to alter her body for the convenience of her caregiving parents begs for further discussion away from what seems to be a rather strident point of view that beleaguered parents of disabled children really can do no wrong. You know, because it's their unimaginable burden and, luckily, not ours.

Amanda begins by stating:

To make it very clear, she will never improve. She’s never going to develop the capacity to make decisions or think or move much on her own.

So, okay. This may be completely true. Or it may be partially true and she will show some minor improvement but never be able to make important decisions independently. Or, like quite a few underestimated disabled people chatting about this on the nets, the medical experts may have done what so very frequently happens to disabled people and discounted them far too early. This discounting and underestimating the medical community does before disabled people are then limited in their life options through the decisions of others is a key aspect of the institutional and societal discrimination disabled people face every day.

Is Ashley's situation one where the medical experts' pronouncements of her permanently childlike mental status is absolutely accurate? Wheelchair Dancer and Cory Silverberg argue persuasively that it doesn't matter and I'd warn that the slippery slope argument too often only really applies on the far side of the disability divide rather than within the widely divergent ranks of disabled people, whose abilities vary at least as widely as abilities among those considered nondisabled.

The disabled folks who are talking about this case are not worried about sliding into that crevice the Ashley Treatment opens the way for -- we have been in it, we've been included in discussions as the equivalent of Ashley, public policies and conventional wisdom dealing with the moral fuzziness of this case too often already puts us right there with Ashley. We too are seen as the "objects" of this problem, with the "subjects" duking it out over what constitutes appropriate care. The differences between our mental capacities and those of people like Ashley are used to separate us, invalidate all those times we are treated as if our disabled bodies complemented a disabled mind. We too are infantilized and patted on the head as parents and other experts on our conditions testify to our needs.

Amanda also says:

In terms of disability rights activism, the compelling case for it is the idea that having a disability doesn’t mean that your life isn’t worth living and therefore you should be accomodated and given as many opportunities as anyone else for the joys of life that other people who are considered more able-bodied have. With that in mind, I think it’s quite possible the parents of this girl are living up to that standard, if in a way that’s startlingly out of the norm. They’ve identified their daughter’s needs and pleasures—basically, those of an infant—and are looking for ways to fight social structures and even biology that would erode their daughter’s ability to have those things. It’s weird, but it makes sense. From that perspective, they are taking activism into a new dimension, seeking not a cure, but a radical rethinking of how far we’re willing to go to accomodate the disabled as they are. I might be wrong, but it’s worth considering it from that angle.

What an ugly twisting of disability rights activism to use it to justify behavior "startlingly out of the norm." How is removing the child's breast buds to prevent future sexual abuse "fighting social structures" and public ambivalence to the fate of the thousands of disabled people sexually abused every year. Why is fighting normal biology acceptable for "abnormal" bodies or abnormal minds? How is being treated differently from nondisabled human beings part of the disability rights cause? How does "radically rethinking how far we are willing to go to accommodate the disabled as they are" relate to a case where a child's body undergoes radical surgery? Why does including disabled people among those you treat with basic human respect require radical rethinking at all?

There are lots of viable ways to approach this complex topic of the "Ashley Treatment," but justifying it as a form of disability rights activism is not one of them.

Update: Well, Sally said much of this, much better, in my own blog's comments here.

The Ashley Treatment

Not a good time to write in detail about what I think, here are some other folks who have expressed what's on my mind better than I could have. The first three especially address the Ashley Treatment from both disabled and feminist perspectives:

Wheelchair Dancer

Penny Richards at Disability Studies, Temple U.

Mary Johnson of Ragged Edge

Cory Silverberg

Arthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania

Thirza Cuthand at Fit of Pique

I'm Funny Too at Did I Miss Something?

I posted briefly here and here.

The "Ashley Treatment." Do you suppose I could syndicate my medical plan too?

On mental capacity

I felt on top of the discussion yesterday afternoon, but it's shot way ahead of me by midnight last night. I'll get into it more, but for now, this infant:











and this nine-year-old child:














are not mentally equivalent just because the medical determination is that the latter has the mental capacity of a three-month old baby. One has experienced nine years in the world, which may include nine years of memories and clearly does include nine years of consciousness, however different or limited from the consciousness which most of us know.

Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

______________________________________________

* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.

Resolutions for the new U.S. Congress

Pelosi was signed in as House Speaker today -- exciting and historic, that. I don't have much faith in her "100 hours" plan because the most important topics for this new Congress to address are too complicated to solve so quickly, but I do have hope for the year. Disability issues top the list of concerns Pelosi and the Democrats need to address:

1) Ending war and increasing peace in Iraq and Afghanistan -- From a purely economic perspective, responsible health care for injured American military personnel already endangers all of us:

More than 1.4 million U.S. soldiers have been deployed to Iraq and Afghanistan since late 2001, and about 26 percent have filed disability claims, according to raw data provided by the Department of Veterans Affairs. That percentage could grow as soldiers leave the armed forces.

''I see the whole thing as a mini-Medicare, another huge entitlement program, which is going to be sprawling out over the course of our lifetimes and our children's lifetimes,'' said Linda Bilmes, a Harvard University public finance professor and co-author of the Stiglitz study. "The big costs come when they get back . . . they stand a good chance of being really underfunded and not taken care of properly.''

Veterans groups worry that they'll be forced to compete with other government programs for funds. Not enough attention is being given to the future mental health and medical needs of Iraq and Afghanistan war vets, they say, especially given how those wars differ from previous ones.

This doesn't even count the much higher costs to Iraqis, with civilians dying from non-war-related, preventable health conditions now due to an almost total lack of access to medical care:

Zainab may be one of the 655,000 Iraqis who would be alive today if the Bush administration hadn't launched its criminally conceived and executed war. Violence caused most of the excess deaths. But 54,000 people died from non-violent causes, such as heart disease, cancer and chronic illness. They were victims of a health care system eviscerated by mismanagement, ill-placed priorities, corruption and civil war.

PetitPoussin comments on another tragic example here.

Congress' number one priority needs to be working honestly to end this conflict. Our job is to make them keep at it until it's done.

2) Universal healthcare and Medicare policy reform -- From the corrupt Republican Part D drug plan to federal requirements for proof of citizenship, recent reforms have complicated health care for thousands of Medicare recipients and shut others out altogether. Not to mention the over 46 million Americans who remain completely uninsured.

3) ADA Restoration Act -- Okay, this doesn't sound nearly as urgent as the two problems above -- and it isn't. Except that the war and increasing lack of health care contribute to the number of Americans with disabilities who must rely on the anti-discrimination law to remain a productive part of society. With Mark Foley and his vendetta against the ADA gone, Democrats have a chance to truly support disabled people by bolstering the ADA against further beatings from the Supreme Court.

House Democrat Steny Hoyer in 2004 speaking at the Tony Coelho Lecture in Disability Employment Law and Policy at the New York Law School:

When we wrote the ADA, we intentionally used a definition of disability that was broad -- borrowing an existing definition from the Rehabilitation Act of 1973.

We did this because the courts had generously interpreted this definition in the Rehabilitation Act. And, we thought using established language would help us avoid a potentially divisive political debate over the definition of "disabled."

Therefore, we could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of "disabled." Nor could we have fathomed a situation where an individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the ADA from discrimination.

The .pdf file of Hoyer's speech is locked from copying and pasting here, but I encourage you to follow the link and read the four principles he gives for the restoration of the ADA that Congressional action can provide. Briefly, these are 1) restate Congressional intent, 2) focus the law on discrimination and not details of an individual's disability, 3) disallow the courts' argument that disabled people must be saved from harming themselves, and 4) reassert that accommodation means finding solutions together rather than creating an adversarial relationship between employers and employees.

That's my short list of work for the new Congress to tackle. Not too much to ask.

Minimum wage for everybody -- yes, even the disabled

Arizona voters passed a new minimum wage that goes into effect this week and for the first time it will not exempt disabled workers from economic parity. As you might imagine, this disturbs many people who run business using sheltered workshops where pay is adjusted according to perceived differences in worker productivity.

According to the New Standard News:

Some 5,600 employers pay sub-minimum wages to about 424,000 workers across the country, according to a 2001 report from the US Government Accountability Office. More than half make less than $2.50 an hour.

Marta Russell, disability rights activist and author of Beyond Ramps (an excellent analysis of the economic ghetto created for disabled persons in a capitalist society), comments:

"‘Commensurate wage’ is an Orwellian tag for a law that legalizes inequality," said disability-rights activist and author Marta Russell. "It degrades the disabled laborer to equate his [or] her productive capacity as less than [that of] a non-disabled laborer and to not give them equal pay. Who is to say that the disabled worker’s labor is not equal to or more productive or profitable for their employers than the average couch potato’s?"

And:

"All laborers should be paid at least a minimum wage, and preferably a living wage," Russell, who uses a wheelchair, told TNS. "That is the only way to raise the disabled workers in question here to an equal economic level with non-disabled workers and lift some of them up out of a below-poverty-level existence. To be paid anything less is to further enslave the disabled worker more than workers in general are already enslaved."

"Frozen girl" discussed on TV tonight

If my sources are right, there should be a discussion tonight on CNN's Nancy Grace show of the "frozen girl" and the ethics of her parents' choices that are recently making news. From the BBC News:

Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.

From the website of Ashley's parents:

The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

And further details on the procedures:

In early 2004 when Ashley was six and a half years old, we observed signs of early puberty. In a related conversation with Ashley’s doctor, Ashley’s Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight. We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects.

The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose, as will be detailed below.

In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues that we discuss below. The estrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control.

It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:

1) Limiting final height using high-dose estrogen therapy.

2) Avoiding menstruation and cramps by removing the uterus (hysterectomy).

3) Limiting growth of the breasts by removing the early breast buds.

The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk.If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.

I plan to watch the show tonight and then discuss this further.

Choosing a college

Sitemeter tells me that someone wandered here with the Google phrase "I'm a disabled teen looking for the right college" despite the fact that I've never said anything that would be specifically helpful in that regard. But since I did find the right college for myself back in 1987 when I was a disabled teen, I'll give it a shot and invite anyone else with suggestions to add them as well.

My entire reason for being compelled to check out Arizona State University as a school to attend came from when I was a shy freshman high school girl and overheard the only other wheelchair user at my school (a senior guy) mention ASU while we were riding the short bus to school one morning. Or maybe he was talking about UofA, but I got it in my head that Arizona would be hospitable in ways that Illinois was not.

I had the grades to get in most places, but never considered anything Ivy League-ish because the ADA didn't exist then and I was well-aware that the older the building, and the more historical the building, the less it would be useful to me. I don't recall how many schools I visited my senior year-- not so many since I was fixated on ASU -- but, inexplicably, I visited Wisconsin's Whitewater campus too. No contest because of one issue -- snow.

My Dad, my twin sister and I scouted out ASU on Halloween day of my senior year in high school. I recall this because Bert and Ernie were the first two individuals I met on campus and this no doubt effected my decision. Giant costumes of Sesame Street characters somehow epitomized the joys of college for me, I guess.

We met with Disabled Student Services and they arranged a tour of campus (hosted by a disabled man) and an accessible dorm room. I stared at palm trees, which I had never been in the presence of before. I ate actual Mexican food made by people who are not bland Scandinavians afraid of cooking with spice. It was really an obvious choice, though made with lots of naivete. And it was the right one for me. Any doubts my Mom and Dad had about me zipping off to live halfway across the country when I did not even have a motorized chair until the week before college began, they mostly kept to themselves and waited to see how far my youthful enthusiasm would carry me.

Presumably wiser now, this is what I'd look for in choosing a college for a disabled teen:

• Accessibility, both architectural and attitudinal. You don't want to spend too much time fighting to get in the building or to be able to take the test, so institutional commitment to access is not enough -- it should already be substantially in place.


• Actual disabled students visible on campus going about their lives like everyone else. This includes temporarily disabled students successfully getting around because the school has a means to help them. Golf carts with student chauffeurs were part of disability transportation services at ASU. A university capable of dealing with sudden impairments of its students is more likely to be flexible enough in its accessibility services to accommodate a wider variety of needs. As a scooter user, the repair department was absolutely crucial to me.


• Diversity programs that include disability as a category of diversity along with race, sexual orientation, etc. Better yet, classes or programs in disability studies would show that someone at the school has a clue.


• Bathrooms in several places around campus that are not only accessible, but comfortably accessible. Don't enroll somewhere you'll be miserable peeing at for the next four years, it just isn't worth the stress.


• Ditto for general living accommodations. And the grocery store that you'll need to buy ramen noodles at needs to be handy too.


• Public transportation that is relatively reliable.

That's my list, for now. Anything else I didn't think of?

Miss Ability: Judging disabled women's beauty

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.

Absolutely Independent, the Dutch company selling the rights to this idea asks in its prospectus:

Ever whistled at a woman in a wheelchair? Checked out the boobs of a blind babe? If the answer’s ‘no’, this barrier-breaking show will put an end to that.

According to Times Online, the company insists that "the show does not patronise disabled people." The article also adds:

British broadcasters will bid for the show in the new year. But there are fears that the trend for extreme reality shows could produce tasteless television.

It would be a shame if this led to television becoming tasteless, wouldn't it? I hope we never live to see the day. But as you might expect, the excitement precipitated by mentioning the ogling of the boobs of blind babes has gotten some attention, and the discussions has been interesting.

Report of this at MensNewsDaily shows exactly how problematic a viewer-determined pageant for disabled women could be. Well, or pageants generally:

“Who are you voting for Bubba?” “Gee, that blond chick is in a wheelchair, but she got hellava big hooters.” “Me, I’m gonna vote for the redhead, her eyepatch is so kinky” “You wankers are nuts, I’m going to vote for the broad with no arms. She’s the perfect woman, you can hit her and she can’t hit back.”

It's all there in just a few sentences, isn't it? Ableism, sexism, objectification, male privilege, fetishism, and the connection between objectification and violence, though it's all said in good fun, of course. What a relief the program is not patronizing too.

On the Snopes bulletin boards, these comments on Miss Ability:

I think that many disabled people would take any sort of recognition as a meaningful human being, rather than the state of inconsequence that is so often relegated to them, even if that recognition is based on something so limiting and empty as appearence.

Challenging? Yes. Progressive? Nope.

***

I feel like it's a little sad that we need a separate ceremony for disabled people. I mean, I know why...I know that people are weirded out. But I feel like ultimately, it would be better if disabled people could participate alongside their nondisabled counterparts.

***

I have this vague uncomfortable feeling that this is something like a modern day side show. "Look! She's crippled, but she looks hot in a bikini! And she talks, too! Amazing!"

***

While I can understand and agree with many of the concerns presented here, I do think this is a small step in the right direction. Too often, even in modern times, disabilities of any kind lead to ostracism and being outcast, whether from prejudice or people just "feeling weird". It's good that the media is finally acknowledging that the disabled can be attractive as well. I have been attracted to disabled women before.

My guess is that the above represent some fairly common opinions about disabled people and sexual attractiveness of women. Disabled people are all needy of attention and approval. It makes sense to separate out disabled women from "normal" women when the topic is beauty. Being seen a legitimate sexual subject for the male gaze is progress for disabled women. The comparison to a circus sideshow is apt, though.

Jessica at Feministing isn't sure exactly what position to take, noting that it "seems kind of cool -- at least in terms of redefining beauty standards." (Emphasis is hers.) Commenters are also divided, though I admittedly don't read comments over there often enough to know the regular trolls.

A sampling of those comments:

Now disabled people can be treated like meat too?
It was interesting that only certain disabilities were allowed. None of those "yucky" (might get in the way of guys finding them hot?) disabilities like cerebral palsy or those that can't be seen?

***

How much money went into this show that could've been better spent, say, on research or helping poor, unattractive wheelchairers build a ramp in their home?

***

I think it's even more disgusting than the usual beauty pageant. What a favor to disabled women (who are in desperate need of enforcement of laws designed to protect their rights, products they can use, and gynecologists who will examine them)--let them be part of the great American sexism show of all time.

***

Why not just include women with disabilities in the typical crap beauty pageants? Doesn't this seem at odds with the "least restrictive environment" idea?

***

In terms of the zeitgeist, this is actually possibly a step in the right direction. It's not so far to go from recognising disabled people as sexual objects to recognising them as sexual beings.

***

The emphasis on contestants having "overcome" a disability ... is completely patronizing and misleading. My disability is a part of me. I cannot "overcome" it any more than I can "overcome" being female, though both of those traits are things that often put me at a disadvantage in the world. It is something you work with and work around, potentially forever. The vital difference is that "overcoming" something means you put it behind you forever. Non-disabled people just love to hear about disabled folks who "overcame" their disabilities because, phew, that means they're fine now and we can go back to not giving a shit about them or their ongoing difficulties or their need for tougher access laws! It is the disability equivalent of the "post-feminist" label and I say it sucks.

The last two comments come from women who identify as disabled and highlight the ways in which this competition differs from your standard beauty pageant for the women contestants and the women those contestants are meant to represent. In addition to the cultural beauty standards that will inevitably be used in judging the winner, the narrative of "overcoming" also determines who is the best disabled woman.

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 consquences 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.

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.