Thursday, April 5, 2012
Saturday, March 26, 2011
This is not a personal note for you...but for all the Ashley X's being created out there.
I have found out that since the crass and self-serving advertisement of the "treatment" by a certain little girl's parents, and in spite of the fact that the hysterectomy performed on that little girl was deemed illegal (too little, too late), many doctors are now "quietly" performing this "treatment" at the request of parents. Many of these treatments are also being performed illegally, many of these are being performed on boys now too.
The tiny upside is that the mastectomy performed on the first little girl is not being performed on other little girls....the horrifying fact being that it is not medically necessary to attenuate growth and that the original parents live in depraved ignorance about the nature of sexual assault...Their daughter paid for that with her breasts.
Dear Ashley X, I am so sorry that my tiny little blog and the tiny little voices of others who understand severe disability have not been heard and that we cannot save you from your fate. We cannot save you from a world that doesn't value your personhood, a world that believes that the body parts on your severely disabled body and your chance to grow-up are not as important as it is to make it easy and cheaper to care for you. I am sorry for the belief that your type of cognizance does not match that of the majority, so, then it is perceived to be okay to irreversibly alter your body. After all, it has been deemed by others that you won't know the difference, and so, you won't care. The doctors and your parents have become mind readers.
And, dear Ashley X, I am sorry for your parents. I am sorry that they were "counselled" by the medicos that this is a viable "treatment option" for your disability. I am sorry that, only three or so years into their lives with you, that they have not had time to come to grips with what it means to have a child with severe disability beyond the work it entails. I am sorry that they will not be able to see you grow up and take pride in that, but that they were instilled with fear that your ultimate size would make you "unmanageable" and their lives more difficult.
I am sorry that your parents were likely lead to believe in utter falsehoods...that growth attenuation will ease or stop scoliosis, that it will make you less likely to have bed sores or contractures or pain. I am sorry that they were fed false hopes, that the doctors will make it seem that you will be much smaller than you will actually be in the end, because they are just guessing with statistics.
Dear little Ashley X, I am sorry that you live in a world that, no matter what size you are, will not provide adequate assistance for your parents to care for you. I am sorry that they will still have to do all the work required to care for another human being and that, no matter what your size, they may become tired and lonely and financially strapped. I am sorry that you may end up institutionalized and possibly given only minimal care. I am sorry that you live in a world that thinks you are a burden and that, really, you shouldn't be allowed to live in the first place. I am sorry that the genuine lessons you have to teach and love that you have to bring to this world are not recognized or valued. I am sorry that, the very fact that you were born and are living should be enough to make people care, but that it doesn't.
I'm sorry, Ashley X...I am so sorry.
Wednesday, January 5, 2011
Wednesday, January 5, 2011By Bill Peace
"Where, after all, do universal human rights begin? In small places, close to home – so close and so small they cannot be seen on any maps of the world".
This reminded me of how misguided the parents of children are who seek out growth attenuation. The most vulnerable people among us are in my estimation important. They are humanity reduced to its basest element. How we care and value these lives says much about our culture. To date, we Americans do a very poor job caring for the vulnerable--the elderly, terminally ill and disabled. All are stigmatized, their lives deemed less valuable than those who are "productive". But what exactly does that "productivity" mean? In looking back on one's life are the monetary goals one reaches more important than love, children raised, family, and the contribution made to the world.
When I was a child my father never asked me how I did in school. Instead he would say "Did I ask a good question and think independently". Answers he told me can always be found but asking hard questions is what separates original thinkers from drones. He did not want me to be a drone. In retrospect I suspect he wanted me to carve out a different life than the one he led. Without knowing it he led me to become an anthropologist as we as a group always ask hard questions and defend the rights of the most vulnerable--often indigenous populations or minority groups. Little did I know I would join the largest minority group in America--the disabled. But I was prepared like few others. I had a penchant for questioning and life long propensity to reject the status quo. What I wish and think the above quote by Eleanor roosevelt gets at is that we all must assert our rights and the rights of those that cannot assert them independently. We must look into the eyes of the most vulnerable and see ourselves. We must protect those that cannot protect themselves. This is where I think growth attenuation fails miserably. Growth attenuation is a simple answer to a complex problem. It enables parents and doctors the luxury of no thought--no consideration of the other, people that do not nor will ever fit in with social expectations. What are there needs? Why are those needs not met? How can we force society to change and become a welcoming place for all those with and without expected cognition and physical prowess. I offer no answers today just hard questions. Questions I think my father would be proud I am thinking about.
Thursday, December 9, 2010
For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.
Saturday, November 20, 2010
Kittay is herself the parent of a child with severe disabilities:
My daughter Sesha is now a woman of forty. She, too, does not toilet herself, speak, turn herself in bed, or manage daily tasks of living, and she has no measurable IQ. Like Ashley, Sesha is so loving and easy to love that her impossible-to-articulate sweetness and emotional openness make it tempting to call her an “angel.” Still, we refrain. To love Sesha as she is, we must accept that, unlike an angel, she has a body that grows and ages.
Her basic position is that, the Seattle Growth Attenuation and Ethics Working Group's compromise on g.a....that it should be allowed only to children with severe cognitive challenges...is discriminatory toward that group of children.
I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.
She makes a number of astute observations about the nature of the discrimiation, this one targeting one always trotted out by g.a. supporters:It is easy enough to grant the point that medical interventions aim at particular ills and thus “discriminate” by targeting the population who can benefit from the treatment. But consider some procedures that disabled children often face: gastrostomy tubes for feeding, spinal fusions for scoliosis, and tendon releases for spasticity. All may also be carried out on children not otherwise disabled, or they address a specific medical disorder, not a class of persons per se. Some, like gastrostomy tubes, may be more frequently administered to those with impaired cognitive function, but only because the impairment is often coupled with difficulty swallowing and ingesting food. Severe cognitive disability is not an indicator for these or for any other procedure. But the majority of the working group believe that profound cognitive disability is a necessary and sufficient justification for growth attenuation.
Her conclusion, however, brings home the very real danger of g.a.:
The real supposition underlying the restriction is that severely cognitively disabled people will never know the difference—even though we cannot be sure this is true. And with that supposition, what else might we be able to do to this population? The long and gruesome history of abuses done to people with severe cognitive disabilities includes a litany of similar claims—that they won’t know the difference if a part of their brain is lobotomized, if they are deprived of clothing, if they are showered communally by being hosed down. Yet we have learned that once we stop supposing that they don’t know the difference anyway, we learn how often they understood the treatment as mistreatment.
The Pandora’s Box of horrors is opened still again when severe cognitive disability is the lone and sole indicator for a certain treatment. The shame of it is made that much worse when some turn out to be cognizant of their mistreatment. The risk that these demons will reemerge is too great for the procedure to be acceptable.
Friday, November 19, 2010
I think the best thing to do when it comes to Fost, is to let him speak for himself. You will see what sort of a man he is and then you can make up your own mind. I am including quotes from both the article in the Hastings report "Offense to third Parties?" The Hasting Center Report > November-December 2010 (volume 40, number 6) and from another document by Christopher Mims, "The Ashley Case, Three Bioethicists Weigh In". This was done via email on January 5, 2007.
Here are a few golden nuggets from the email exchange:
Joel Frader, agreeing with Brosco and Feudtner, says that the measures used to limit her growth "miss the point," which is the lack of social support which might allow the family to care for her at home even if she grew to normal adult size; e.g., by providing mechanical devices to assist in lifting her. I must day I think this misses the point, which is to try to maximize Ashley's interests, or more precisely, to maximize the ratio of benefit to burden. (emphasis mine)
(The life of a child is boiled down to a benefit to burden ratio)
I also agree with the father's observation that having her size be more appropriate to her developmental level will make her less of a "freak" (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor, and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring.
(need I say more?)
It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. This, of course, may be more of a problem for strangers than the parents, who seem wonderfully attached to her, with little difficulty seeing her as a beautiful, radiant, contributing member of their family.
(Again, the quote is appalling, but notice how surprised he seems about the parents being "wonderfully attached" to their daughter, etc.)
It's helpful to note the father's primary reason for removing her uterus: she doesn't need it. Since it's only purpose is procreation, which will clearly not be in her interest, it presents her with risks and burdens and no benefits.
(Under this rationale, Ashley neither needs her teeth, her legs nor her arms.)
The detailed account of the medical basis for the decisions in Ashley's case, as well as the careful ethical reasoning that they relied on, are well documented in the article by Gunther and Diekema, and the father's extraordinary detailed account of how and why they came to their conclusions. Whatever disagreements critics may have, it is not possible to say this decision was made casually or quickly, without careful consideration of the relevant facts and arguments.
(There were no disability advocates on this committee.)
From the Hasting's article:
That said, I believe too much deference has been given to the claims of third parties that their interests or preferences should be taken into account when individual families, in consultation with their physicians, are contemplating growth attenuation for children similar to Ashley.
(Here, Dr. Fost is talking about disability advocates and the LAW, which prohibits the sterilization of the disabled, without their consent.)
With the help of a federally authorized advocacy group with remarkable powers to subpoena hospital records, those who were offended by Ashley’s treatment succeeded in pressuring the hospital to prohibit its physicians from offering similar treatment to future patients without court approval.
(Again, this is the law...and the "advocacy group" WPAS, Washington Protection and Advocacy System, now Disability Rights Washington, pointed out the legal matters involved in Ashley's strerilization. I believe it is Fost that is offended here.)
This remarkable intrusion into private medical decisions lacks any plausible claim of harm to third parties other than emotional distress on becoming aware that one’s moral or political views are not shared by everyone. By this criterion, parents seeking cochlear implants for a deaf child, surgical correction of club feet or scoliosis, or a do-not-resuscitate order for a terminally ill child should be reminded that their decisions may be offensive to others and should be given literature on the reasons for the disagreement. Worse, many of those who opposed Ashley’s treatment argue that other treatments that involve changing the body should be prohibited without prior court approval.
(Do I need to say anything here, really?)
The report states that (disability advocates') “concerns and perspectives . . . should be considered during the decision-making process” by providing parents with “information summarizing arguments for and against this controversial intervention, or offering them copies of relevant publications.”
(Fost is opposed to this...he believes that it is possible to make an informed decision with a hospital ethics committee, a doctor and parents...none of whom have any understanding of disability. Remember, the medical community once "informed" parents that institutionalization, lobotomies, and enforced sterilization on their disabled children were the only, viable ways of dealing with them.)