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.

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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!"

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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?

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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?

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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.

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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?

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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.

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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.

Looking for Harriet

For the many people googling Harriet McBryde Johnson because of her Christmas Day editorial in The New York Times, she's mentioned on this blog here, here, here, here and here.

And . . . she's back

No, not me.

I'm done with the family Christmas events but was gifted with several books, which I must read now so that I can trek to the bookstore and fondle some more.

Liz of Grannie Gets a Vibrator is back. She has been back for a while, actually, blogging as Lymphopo at her new site As The Tumor Turns. I'm honoring her with gimp status in my sidebar -- her recent medical adventures and the financial consequences of same certainly qualify her.

In my previous post, I link to my August 2006 post "Until every single penny is gone," which I wrote when inspired by how deftly Liz spoke about the financial dramas that accompany medical ones. So, update: The Liz referred to at the top of the penny post is this amazing diarist of tumordom. Drama. Adventure. Hairlessness. Cute canine-children wearing pants. It's all there, and I wanted to pass that news along before diving back into the dreamy prose of Allende's Inés Of My Soul.