Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

Cross-posted at Alas, A Blog

On Ruben Navarro

If you read just one thing this week about disability in America, read this.

I briefly mentioned Navarro's case here but the above link has important and better detail than the news story I linked to.

Doctors involved with Ashley Treatment not as unified in support as previously indicated

From today's Salon.com, Rebecca Clarren reports in "Behind the Pillow Angel" that:

Doctors at the Seattle hospital that operated on a disabled girl to keep her from reaching sexual maturity -- the controversial "Ashley Treatment" -- were more troubled by the procedure than has been reported previously.

While it's not paticularly surprising that some of those on the ethics panel did have and do continue to have misgivings both about the specific case and the broader ramifications of the Ashley Treatment, the details of those misgivings are an important addition to the debate, which has frequently included declarations that the situation must be acceptable because a panel of experts signed off on it.

From the Salon article:

The committee members met Ashley and watched her interact with her parents. They saw her in a wheelchair and how she responded to her father's voice. "We got to see this little girl and see a little slice of what her life was like," Diekema told Salon. "It's very clear that Ashley's life is pretty small, that it's about her family. It's not about running around on the playground or dating. Her life is what a 3-month-old's life is like."

After Ashley and her parents left the room, the committee spent two hours in debate. At the end, no one voted with a show of hands. But in the ensuing discussion, the air was fraught with tension. The committee grappled with the following questions. How does keeping Ashley smaller help her? Does the treatment take away anything important to Ashley's own life?

Dr. Douglas Diekema has been the public face of the Seattle hospital, charged with explaining and defending the medical institution's actions, but statements made by Ashley X's parents on their public blog have apparently characterized the situation -- and the treatment's future for other children -- in ways problematic for hospital and those who were on the ethics panel. Again from the Salon article:

The public omission of the debate within the hospital and at the ethics committee results in part from federal medical laws to protect patient privacy. But because the public has been left unaware of the nuance and complexity of the ethical debate within the hospital, doctors worry that other disabled children could be more easily subjected to the Ashley Treatment. (On their blog, Ashley's parents write: "It is our hope that this treatment becomes well accepted and available to such families.") It was in part this fear of the case setting a precedent that initially spurred doctors at the Seattle hospital to question the surgical procedures.

"There were a number of people who were not very comfortable with the idea, and other people who weren't comfortable with it at all," said John McLaughlin, director of the neurodevelopmental program at the hospital. "In the end, the parents' articulate and assertive approach to wanting this done is what carried the day for that one child. However, most of us have major reservations about it for anyone else. My bottom line is that this is one more example of well-intended, but poorly thought-through treatment of kids with disabilities."

Put more succinctly, as her guardians, the hospital gave the final authority to Ashley's parents because they didn't have better medical solutions than the growth attenuation that was proposed and didn't necessarily believe it was a good idea at all.

Most troubling (and though I've seen it discussed on disability listservs, this article is the first I've seen to note this) has been the lack of candor about the whole procedure, from the actual medical treatments included in the endeavor to improve the child's (parents'?) life to the full process of the ethics committee:

What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland. "The real question is: Is there any benefit to this treatment?" said Nickel. "I would have counseled them to wait, to sit back and see what happens over a year because this child might accomplish most of this on her own."

The article also never mentions the breast-bud removal, ostensibly the most contentious element of the Ashley Treatment. (The parents' blog provided that piece of the story.) Taken as a whole, the Ashley Treatment may appear more beneficial than it really is, said Dr. Christopher Feudtner, a pediatrician and bioethicist at the University of Pennsylvania. That's troubling because the treatment, he said, "is prone to abuse."

"We're manipulating her body so that she can fit in better to society, while neglecting the inner manifestations of pain, and that's a radical extension [of current medical philosophy]," Feudtner added. "Some child, somewhere, with much less severe mental disability than Ashley, will get this treatment. It will happen and there needs to be more people standing up and saying this will have side effects we didn't anticipate."

On the ethics panel (italics mine):

Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."

The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.

Also, the article reports that the Seattle hospital alone has had inquiries from three other families asking this "treatment" since the story went public.This puts the hospital and it's ethics panel in rather a quandry, I'd think, since the original news Dr. Diekema gave was that the procedure made perfect sense and was agreed to be beneficial by all involved.

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.

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.

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.

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.

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.

"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.

My déjà vu

Wednesday, November 8, 1989 was a beautiful day in Tempe, AZ, with the sky a cloudless blue. I was up early, waiting at the front desk of Palo Verde East dorm at ASU for my friend Marian's step-father who was coming for all the boxes of Marian's things. He never showed. Around 8 a.m. Deb came instead to tell me personally that Marian was dead.

Deb looked good. Relieved. Over three years before, as the roommate before me, she'd promised to be at Marian's bedside if/when she died, and she'd been tirelessly attendant in the ICU for three weeks. She told me how it ended -- the gradual failure of organs and the mid-night final, peaceful slowing of her heart until it simply stopped. Deb smiled and said it was the most beautiful thing she'd ever seen.

Marian had been comatose for about ten days with a temperature of over 104 degrees. We'd known it was over. I'd spent that Halloween watching the macabre college partying all around me as I tried to absorb the fact that she would not be recovering. Before that, we'd known she would miss the rest of the school semester and a friend and I used nervous energy to pack up her belongings in the dorm.

I'd last seen Marian before the coma came. I'd ridden two buses with a friend, and we arrived as they called a Code Blue for her. A nurse found us shortly and asked for someone strong enough to calm and comfort her after the pain and fear of resuscitation. Nevermind strong, it was now or never, literally. We'd arrived during a rare break for her family and they weren't anywhere to be seen.

Marian's lips were blue around the intubation tube and her neck was not at the angle that juvenile rhumatoid arthritis had stiffened it to in her childhood. They'd probably had to break something in her neck to tilt her head back and insert the breathing tube. She was swollen from massive doses of predisone, and there was fear in her beautiful bloodshot blue eyes.

I held her hand, having no idea then what an incredible physical comfort that can be when frightened and unable to speak. And she was frantic to speak. There was an alphabet board -- another thing I was to learn about eventually too -- for communicating and she trembled as she pointed out the letters successively.

C. O. I. N.

She gestured to me and I ran through obvious possibilities, none of which satisfied her. Yes, C. O. I. N. but not "coin." She meant something more. She was insistent, emphatic. This was important to her to say. We couldn't communicate and I didn't know if her eloquent, brilliant mind was working clearly. She kept spelling out COIN and waving her arms at me while I tried to be calm and reassuring. I quizzed her. She didn't need anything. She wasn't trying to talk about money. This was something she wanted to tell me.

This continued until Deb and her family arrived, rushing in with alarm after hearing she'd stopped breathing. Nurses asked for someone in the crowd to clear the room and I reluctantly volunteered, not knowing then how slow her leaving us would be.

Now, I can imagine exactly how frustrated she must have been with me. I didn't let her "speak." I failed to solve this mystery. The very last thing she tried to say to me I didn't understand. And I left the room with it unresolved. She wasn't conscious after that day.

That was 17 years ago. One year ago I was hospitalized with desperate digestive problems and pneumonia from endless vomiting. Exhaustion on top of disease-weakened abdominal muscles made it difficult to breathe. Locally, they intubated me and sent a camera down my esophagus to see what was up, then I was flown by helicopter to St. Paul and expected surgery.

Heavily drugged, I only remember the helicopter lifting off, then no clarity of memory for about two days. But during that lack of clarity, I had a vivid, unforgettable experience. Through the blur of sedation, I was aware of medical people working over me. As they did various procedures on me, including installing a feeding tube to my stomach and jejunum, I experienced total, extended déjà vu. I anticipated and then experienced -- over and over again -- what was happening.

I don't have any clear memory of what specifically occurred, but I remember being shocked and even alarmed by this mystical déjà vu as it repeated itself relentlessly. It seemed to go on and on, and though I have no doubt the sedatives caused the experience it was still a mystical, even spiritual, event.

I woke up from the drug haze in a private ICU room that, ironically, had a thermostat problem causing a periodic hissing noise that truly sounded like Marian's trusty but dilapidated power wheelchair from long ago. The cycle of hissing-silence-hissing of the thermostat by the door sounded as though Marian was doggedly circling the ICU hallway outside my room.

I spent the next month lying in that bed spelling or writing out messages as Marian had tried to do. And it was then that it occurred to me with a certainty: Coincidence. Déjà vu.

On Terri Schiavo

As Harriet McBryde Johnson says, "The Terri Schiavo case is hard to write about, hard to think about." I've had an emotional deer-in-the-headlights response about it for quite some time now. Months. And while the legal options for saving Terri Schiavo from starvation may have been exhausted, I'll offer here some writings by others that provide the disability perspective so lacking in the mainstream debate.

Harriet McBryde Johnson on Slate, via Disability Law:

In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

Steven Drake, research analyst for Not Dead Yet:

Given the current research regarding brain activity and misdiagnosis, it's a virtual certainty that countless people have been helpless to prevent their own deaths through starvation and dehydration. There's an analogy to DNA evidence and the death penalty. Here in Illinois, the staggering numbers of innocent and wrongly convicted people on Death Row resulted in a moratorium on the death penalty. Whether you agreed with the death penalty or not, everyone was forced to find ways to make sure no innocent person ended up on Death Row again. The same amount of concern should apply to medically induced deaths, in which the numbers far exceed the number of convicted people executed each year.

More by Stephen Drake:

People on the right are killing us slowly with cuts to the budget and Medicaid while the people on the left kill us quickly and call it "compassion" -- either way we end up dead -- AND WE OBJECT.

Ragged Edge Editor Mary Johnson's outstanding comments at Common Dreams:

There isn't a single disability rights activist I've heard from who is happy that things ended up at such a sorry pass, and who isn't afraid that this will make liberals hate them even more than they now do. Yet it cannot help being noticed that it generally depends on whose ox is being gored as to what side of the states' rights debate one comes down on. We're all for federal laws when it comes to things like civil rights -- and gay marriage. We're not, though, when it comes to things we've labeled as "right to die" -- which we say are "privacy issues."

We might want to take another look at the cost of such privacy.

Further links to follow here.