No More Ashley X's: Say NO to Growth Attenuation

Dear Ashley X...

2011-03-26T09:45:00.006-04:00

Dear Ashley X,

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.

2011-01-05T22:11:00.000-05:00

Wednesday, January 5, 2011

From: The Flight of our Hummingbird

A long post in which I don't discuss mucus but talk about Izzy and growth attenuation

“She is in the 90^th percentile!” – the nurse exclaimed excitedly as she has recorded Izzy’s height on the chart. My tiny little Bean who hardly made it onto the chart when she was born has grown into a String Bean.

“Oh that’s great.” – I blithely told the nurse with an affirmative head nod. Then after she left and it was just the Bean and I in the small examining room, I silently shook my head. “I’m so screwed” – I murmured to myself. “I have a 3-foot tall giant baby who still can’t sit up.”

Not that I haven’t noticed that Izzy has grown out of her stroller and has grown into the size of a small ball python. I’m barely 5”2 when I stand straight in my thick winter socks, and even with the leftover baby weight I only weigh around 109 pounds, on my fat days. I find the best-fitting clothes in the junior department and I regularly use “adaptive tools” to reach the items on my kitchen shelves. I’m bordering on child-sized, but space-efficient is the term I prefer. Izzy, on the other hand is built like her Dad: she is tall and lean with very long arms and legs. Phil was practicing weight bearing and standing with her the other day and I was astonished when I saw her in a vertical position: she would be a head taller than her peers, if she was able to stand.

Due to Izzy’s height and weight, it is increasingly more difficult for me to pick her up, to carry her, to put her in her stroller and to give her a bath. Not to mention suctioning her nose, which is reminiscent of wrestling with an octopus. Since Izzy has the height and weight of a two year old but not the body control, it is a challenge to maneuver her. When you pick up typical children who are my daughter’s size, you don’t have to scoop them up from a lying position, as they are able to sit and stand. They also cooperate by lifting their arms and holding on to you, which makes a significant difference. I can’t just casually hold Izzy in one arm, I have to give her extra support and be prepared for a sudden drop seizure that could leave her injured. Of course it could also leave me injured, depending on the colliding body parts.

Izzy’s potential tallness makes me slightly nervous, because of its future implications concerning her care. There is no guarantee that she will ever walk, but even if she does, lifting, maneuvering and taking care of a body that is larger than your own is strenuous work and comes with special challenges. Since I always keep one eye on the future and my middle name is prudence, I’ve been working out with some serious weights to build up more upper body strength. I do have some nicely toned arms and shoulders as a result, but really, who am I kidding, I’m still the size of a 12 year old boy.

When I was reflecting upon my feelings concerning Izzy’s growing body, Ashley X came to my mind. Ashley, or the “Pillow Angel” as her parents affectionately refer to her, is a severely disabled Seattle girl whose growth was attenuated in order to keep her child-sized and thus more manageable. Ashley received high doses of hormones to stunt her growth and went through several surgeries to have her breast buds, uterus and appendix removed. Her parents stated on several occasions that the purpose of the treatment was to ensure the best quality of life for Ashley and not to make life easier for the caregiver.

I understand the concerns and fears that drove Ashley’s parents to make such drastic decisions about their daughter’s body, but while I can relate to their feelings, I cannot imagine making the same decision for my daughter. In fact, it makes me shiver just to think about it.

Even though Izzy’s potential tallness makes me slightly nervous, it also fills me with pride and joy to see her budding beauty. When I look at her long lean body, her peaches and cream complexion, and her bright blue eyes, I see Phil’s reflection in her features. Her appearance reminds me that she is a part of Phil and a part of me, but I’m also aware that she is her own self. She belongs to me but I don’t own her. I will probably make decisions for her as long as I’m alive, but my decisions will always honor her and her rights to her own body.

I repudiate growth attenuation at an intellectual level, because it violates very basic human rights, but my aversion goes deeper and it feels wrong at a visceral level. I will never put my daughter through growth attenuation, just like I won’t pull her teeth out, even though she doesn’t use them being completely tube-fed. I will never have her uterus removed, just like I won’t have her legs amputated, even if she doesn’t learn to walk. I will not have her breast removed, just like I won’t cut her lovely curls off, even if my life would be easier if she had a crew cut. And that’s just it. I don’t see how growth attenuation would benefit her, as it wouldn’t help with the mucus, the seizures, or her motor skills.

I don’t believe that preventing the sexual maturation of severely disabled girls directly improves the quality of their lives. Rather, it eases the psychological discomfort of people who perceive secondary sexual characteristics incongruous with a limited physical and mental condition. I wonder if this psychological discomfort also played a role in the decisions of Ashley’s parents. Perhaps they embraced the role of the parents of a severely disabled child, but they didn’t want to become the parents of a disabled adult. Pillow Angels don’t have breasts or menstrual cycles. It is not easy to wrap your mind around your child’s disability, but I personally rather transform my own thinking and perception than alter my daughter’s body.

2011-01-05T22:10:00.000-05:00

Wednesday, January 5, 2011

By Bill Peace

Great Quote

I just came across the following quote by Eleanor Roosevelt:

"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.

Posted by william Peace at 8:12 AM

Growth Attenuation, Hastings Center Report and Media Misrepresentation

2010-12-09T15:59:00.001-05:00

By William Peace

It has been one month since the Hastings Center Report about growth attenuation was published by the “Seattle Working group”. I was encouraged by the article produced though I disagreed with the working premise—specifically that growth attenuation or the Ashley Treatment as the popular media terms it is a viable course of treatment. I do not think growth attenuation should permitted even in cases where a child is not ambulatory and has a profound cognitive disability. However, this does not mean growth attenuation should never be performed. In some exceedingly rare cases growth attenuation may be medically necessary. But such a treatment is extreme and must be subject to thorough review. At minimum that review would entail internal, external and the independent legal representation of the child/person whose growth is attenuated. The Seattle working group in this regard has multiple fine suggestions none of which are being reported by the media. The media, here I refer to mainstream news outlets such as newspapers and television reports are grossly misrepresenting the conclusions reached by the Seattle Working Group and published in the Hastings Center Report. This particularly unfortunate as there is much to be learned by a careful reading of the article wisely published by the Hastings Center (subscription required).

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.

Posted by william Peace at 10:16 AM

The Best for Last

2010-11-20T11:58:00.004-05:00

The most exceptional piece of writing and argument against g.a. comes from this article, "Discrimination against Children with Cognitive Impairments?" by

Eva Feder Kittay (The Hasting Center Report > November-December 2010 (volume 40, number 6)). I have had the pleasure of reading Ms. Kittay's work before, and she never disappoints. (Kittay's works HERE.) If you don't read any other piece from the Hasting Centre, read this one at least (it's free, just sign in). Short of copy-pasting it to the page here, I really cannot add to it. It just, quite simply, gets to the heart of the matter. I wish to post here, a couple of the best quotes.

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.

Thanks to Eva Kittay for being an eloquent spokesperson against the Ashley "treatment" and in support of the rights of the severely disabled.

Infamous quotes by Norman Fost

2010-11-19T12:46:00.002-05:00

The Hastings report includes an article by Norman Fost, a behind the scenes man strongly influencing the Ashley debates...PRO g.a.. He is supremely arrogant, believing that doctors and hospitals should be above any sort of "third party influence" when making medical decisions.

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.)

Will technology help us avoid more Ashley X's?

2010-11-18T11:34:00.004-05:00

I read an interesting post over at the Bloom site. "Technology: Hype or Hope". I, for one, think technology brings a great deal of hope! Here's one little excerpt...

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations. (emphasis mine)

What a great point, Ms. Castelane!

When I read about all the wonderful technology that is out there, I wonder about all the children who are "locked in"...minds that function, bodies that don't...and how some of these technologies may help to "unlock" them. Then I think about how this will affect proponents of the Ashley "treatment".

Those who promote g.a. also promote outdated concepts of "static brains" that will never change. They talk about children who have "the mentality" of babies and that it is not possible for any progression to be made. They are peddling falsehoods like the snake-oil salesmen of old...and parents are buying into it and are irreversibly altering their children's bodies based on these lies.

Brains CAN change and grow and develop. In the severely disabled, they may not do so "typically", but they do change. Parents with severely disabled adults will almost always attest to this fact. It remains difficult to impossible, however, to really know just how much these people understand, when they cannot do even the slightest movement consistently with their bodies.

Now, we have technology (changing and improving at lightning speed) that may be able to unlock the potential for communication in our severely disabled population. Yes, it won't work for every one, every time, but will it work more often than not?

What will doctors tell parents about g.a. then? Will they continue to spew the old party line that their children will never change and that, in the end, they won't know what is being done to them, so it's okay? Or will they have to change their tunes, given that a child could be assessed for communication ability with new technology? Proponents of g.a. want parents to start the protocols as early as possible...counselling for it by the child's third birthday. Does that allow enough time for a child's brain to develop sufficiently to be outfitted with the new technologies? How will parents feel, then, to have so drastically affected their children's physical selves if, in years hence, they discover their children are able to communicate?

I can only hope that new technology, made readily available to the severely disabled an their parents, will make g.a. a dinosaur concept promoted only by dinosaurs in medicine.

Another Hasting article addressed

2010-11-17T09:26:00.003-05:00

I will be commenting now on another article of the Hastings Centre report. This one is entitled "Against Fixing a Child--A Parent's View" by Sue Swenson (The Hasting Center Report > November-December 2010 (volume 40, number 6).

Obviously, this piece is more in tune with my views as it is opposed to the Ashley "treatment".

It is difficult to care for a son who is legally blind, quadriplegic, nonverbal, autistic, profoundly intellectually disabled, prone to seizures and sleep disturbances, six feet tall, and 190 pounds.

Indeed. Swenson sets the tone right away: she knows what this is all about, caring for a severely disabled child. This deflects typical criticism from those in support of g.a. that those of us who stand against it "don't know what it's like."

Though I had to read this piece a number of times to really get its focus, I think, in the end, Swenson succeeds in making her point most clear: community supports that assist in families in caring for high needs children allow for these individuals to live full, satisfying lives, as they are. Community supports allow for our children's human rights to be honoured by valuing them as people...people who are part of the community.

Family support—services whose aim is to help families nurture and enjoy their disabled child at home—helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.

Swenson is also quick to establish her view when it comes to the role of parents in decision making for their children:

Growth attenuation should be out of bounds unless it treats an underlying disorder. The human rights of the child as a person with disability should limit parental rights

Do I know what my child wants or will want? Is there a supported decision-making process that gives me more to go on than my own interpretations? Who is protecting my child’s rights? Decisions that are made behind a parental privacy shield can be too easy for our own good.

I could not agree more. Gaining this perspective can be a difficult one for parents, however, when it is intended that g.a. be offered as an "option" to them when their children are as young as three years old. I might add that, it is not only the "parental privacy shield" that is of concern, but the "medical shield", that is, the very strong influence medical practionners have on parents who often feel overwhelmed with their childrens' issues, and have not yet had the chance to explore perspectives from outside the doctors biases.

Though I am happy to read anything from anyone that opposes g.a., there were a few areas where I felt the issues being presented were significantly unclear. In the following paragraph, Swenson describes her 28 year old son's living situation:

Home- and community-based supports are services offered to adults in places other than a family home, as the person’s needs and the family’s situation (and age) dictate. Last month, Charlie moved to a house (not a group home) with two roommates and staff. His community support workers are great. They support him; they do not control him. They are well trained, well supervised, and well managed. They are dedicated, friendly, and respectful.

Let me say that Swenson's son is lucky indeed! Would that such supports existed everywhere. One almost gets the impression that she takes this for granted. If this were indeed the case for most parents, I think the entire g.a. debate would be moot. It is possible, however, that she is simply emphasizing this point with personal experience: services like these make it possible for children with severe disabilities to live fully and happily without being subjected to drastic and unncessary physical alterations. SERVICES are THE answer to the "problems" perceived by those who would support g.a.

Another point that I had to mull over from Swenson's article is one of the questions she directs parents to ask themselves before making decisions that will affect their child's future.

What would I do if my child did not have disabilities? Parents (and physicians) of children with disabilities do not always understand disability policy and culture. Interventions such as growth attenuation that are allowed only when a person has profound intellectual disabilities are especially difficult to justify.

Whereas I certainly understand and agree with the answer to the question, I didn't quite actually get the question itself at first. I mean, the fact is, you are in a dilemma precisely because your child is disabled. Life takes on an entirely new direction than the "standard". I suspect, though, that she is once again, pointing out a perspective about human rights: would you do this to a "normal" child? Why would you do it to a disabled child? What is it about disability that leads us to believe that we are allowed to compromise a child's physical integrity, thus violating their human rights? An excellent point.

Swenson's last q and a...

Am I driven by my own pride or ego? We are often put on the defensive about our sons’ and daughters’ dependence on public support. But support of vulnerable people is almost always recognized as a legitimate activity of government. It is easier to overcome the shame of public dependence when you try to be public-spirited. Disabled people, too, can live simply so that others may simply live.

I have to admit that there have been times when I felt uncomfortable with the fact that the world seemed to have to bend over backward to accommodate my child's very expensive needs. Swenson has a legitimate point to make here. I'm not entirely satisfied with the answer...and I really don't understand the last line at all. Perhaps someone could clarify it for me.

In any case, I am happy that Swenson stepped up to stand against the so-called Ashley "treatment", in support of the human rights of the severely disabled.

2010-11-12T12:15:00.011-05:00

There are several Ashley "treatment" articles in the Hastings Centre's most recent report. Many are free to view with a simple registration. Go for it if you are interested. Each piece is short and fairly easy to read. You can come to your own conclusions. I will be commenting on each piece in the following posts.

First: "In Support of the Ashley Treatment--A Parent's View" by Sandy Walker. The Hasting Center Report > November-December 2010 (volume 40, number 6)

This article is weak in a number of areas. I am surprised that it passed muster from the Hastings Centre.

Basically, Walker's piece takes position that, because her daughter is growing, the family can no longer do the things they once did.

We are no longer able to take her out to many of her favorite places and activities, and our ability to travel with her—by car or air—has also been limited. Until she was around four feet tall, she used to be able to ride on her father’s shoulders. This allowed her passage to many places where it was difficult to carry her or to take the chair: the beach, through the snow for that wild sled ride down the hill, and even up the stairs of our friends’ inaccessible homes. At her present size, this is no longer possible.

Walker adds that, with the development of knee flexion contractures,

She can no longer assist with transfers, stand or dance with Barney in front of the television, jump on the trampoline, zoom down the slide, or be supported in the swing at the local park. Getting her in and out of the pool is also no longer possible for me.

There is also a reference to spasticity:

Diaper changes and positional changes at night also cannot be managed by a lift, and they, too, have become increasingly difficult with her increased size and spasticity.

Before I address the first point, let me point out here that the mention of contractures and increased spasticity in this article provide considerable distraction from the issue at hand. There is no evidence, scientific or even anecdotal, that growth attenuation can prevent or even minimize the presence of contractures or mitigate spasticity in the disabled population. Yet this is directly implied in the piece. It is important that these sorts of diversionary tactics don't get tossed into the mix when discussing g.a. G.A. does one thing and one thing only: it attenuates growth. All other perceived benefits are speculative. Long term studies from a significant population of growth attenuated children will need be carried out before any claims beyond the effect on physical size can be made.

Another thing that is unclear here, is Jessica's level of ability. Apparently, prior to the leg contractures, the child could "stand or dance in front of the television" and "jump on a trampoline." This implies the child had use of her legs...enough to dance and jump! One gets the impression that, in a fit of 20/20 hindsight, Walker would have attenuated her child's growth, yet her child was not a candidate for growth attenuation in the first place. The powers that be, in their wisdom, felt that only those children who are non-ambulatory would be "eligible".

Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. (emphasis mine) ("Growth-Attenuation Therapy: Principles for Practice", Pediatrics magazine, June 2009)

What you are seeing here is the slippery slope in the making. It begins with non-ambulatory children, then progresses to children who might become non-ambulatory based on past experiences with other children or based on the "typical progression" of a child's condition?

In returning to the main point...that the child's size is affecting her ability to do things she once did...Walker is quick to make the following assessment:

These are problems that no amount of resources could solve. And in reality, not only are these “resources” not readily available, but many of them do not work for a child like Jessica. Those who call for “more resources” to solve these problems do not fully understand my daughter’s needs or my desire not only to keep Jessica comfortable and healthy, but also to save her from boredom and seclusion.

It is true that resources for the disabled are not readily available everywhere, but to dismiss the idea out of hand is ludicrous. In our city of under 400,000, there is more than one accessible pool, more than one Snoezelen room, accessible buses, plus paratransit, a children's centre that caters specifically to the disabled population, accessible playgrounds, good school programs, a children's museum that is fully accessible and a host of other places to take a child with significant challenges. In the small town of 26,000 in which I lived previously, there were still quite a few services....some buses were accessible, but there was always para-transit, there were many accessible playgrounds, there was one Snoezelen room, one accessible pool, and another in a small town 20 minutes away, schools, by law, all had programs to suit disabled children. So, when Walker categorically states that "no amount of services" will "save her (daughter) from boredom and seclusion", she is, quite simply, wrong. Her child's size may force change to the activities that she once did, but it is not a wholesale prescription for "boredom and seclusion". Friends whose homes are inaccessible may be friends enough to make their homes accessible or friends enough to meet elsewhere with the family. There may be no more zooms down slides, but zooms down ramps. There may be dancing in the wheelchair. There may be no more supported rides on swings, but, the creation of a swing that holds the chair...something most service clubs are only too happy to build. Change comes to all families. To expect to keep everything the same via growth attenuation is unrealistic, to say the least. It doesn't give the child any chance for growth and alternative stimulation either. Really, does even a disabled child want to do the same thing for the rest of her life?

Walker also refers to "parents' aging bodies" being an issue with caring for Jessica. As she gets bigger, it gets more difficult to lift and move her. I do not doubt this. Proponents of g.a., then, like to see themselves as true visionaries, being proactive in planning for the future of their children at home, which is where they are expected to be cared for, forever, that time-span being particularly ill-defined. Unfortunately, such short-sighted naivete serves no one in the long run. It has obviously never occurred to Walker that her own life situation may change significantly in the blink of an eye, precluding her from taking care of her child at any size. She or her husband may themselves become disabled or incapacitated in some way. There may be divorce, financial ruin, death. Even more basically, an 80 year-old parent is no more likely to be able to lift a small child than a larger child. In truth then, proponents of g.a. have their heads in the sand about disabled children's futures. To freeze the child into a small size does not freeze the inexorable marching of time and the unknown that unfolds in it's wake. The future must be addressed: who will care for my child should I no longer be able to?

This begs the question of services once again: home care, respite, nursing, appropriate housing outside of the home. These are things all parents should avail themselves of or work hard to create in their communities. You do it for your child's future best interests. You do it for yourself, as a caregiver, to give you the space you need to carry on with the daily tasks of living with a child that requires full-on care. Growth attenuation does in no way guarantee a particular sort of future for any child.

Toward the conclusion of the article, Walker mentions "the disability community", and how she felt "disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family."

I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.

I will be the first to agree with Walker that disability activists have done a poor job of reaching out to and trying to understand the issues that face families caring for severely, multiply challenged children. There are a number of reasons for this, this being beyond the scope of discussion here. Suffice it to say that, as a parent with a child who is severely disabled physically, cognitively and is medically fragile, I know that those advocates in the disability community have rarely been in tune with mine and my child's reality when it comes to our day to day lives.

However, a significant distinction must be made here. They don't get our day to day, but they do understand the long term societal implications of a "treatment" like that put forward by Ashley's parents and her doctors. Here, the shoe is on the other foot; most doctors and many parents new to the disability game are unaware of the long and terrible history of the treatment of the disabled in society. Things that were once thought to be "good for the disabled" like automatic institutionalization and forced sterilization, are only now, in retrospect, understood to be the horrors that they were. Much was done to those with disabled bodies and minds in the name of doing what was best for them...much of it nothing more than abominations. Disability advocates, when it comes to growth attenuation, are able to see the forest for the trees in ways many parents, over-busy with caring for our children and in lock-step with the medical community, cannot. Their shouts of dismay about this "treatment" are dead on. In not listening to them now, will we have to wait another 50 years, and sacrifice too many of our severely disabled children, before we look back and see what an assault to their human rights that is growth attenuation?

Walker concludes her piece with the following:

I believe the opposition to the Ashley Treatment has taken our society a step backward in what has been a positive attempt in recent years by the medical community to allow parents to make some of the difficult decisions regarding their children’s care. Personalized medical care should allow individual families to make informed decisions within the medical and moral boundaries that are found in the hospitals they frequent. (emphasis mine)

Walker's error here is that she never steps outside of the medical community's perspective to view the large scale societal implications of growth attenuation. Understandably, given this bias, it looks fine. Once again, this is where she must turn to disability advocates to broaden her perspectives. If she wishes to build bridges, she needs to turn to those whom she felt abandoned her and be willing to teach and be taught. She must move away from a purely medical model of disability which aims to alter the disability rather than the society that encompasses it. Our children do not so much need to change as society needs to accommodate them...big or small, severely or not so severely challenged, young or old. Similarly, we parents who are choosing to do this important work as caregivers need all the support we can get and plans in place to assure ours and our children's happy and safe futures.

Ashley Treatment in the Hastings Center Report

2010-11-11T14:56:00.000-05:00

William Peace

In the November/December issue of the Hastings Center Report growth attenuation and the so called Ashley Treatment is discussed. A subscription is required to read the feature article entitled "Navigating Growth Attenuation in Children with Profound Disabilities". However, the responses, excluding a commentary by Alice Dreger, can be accessed for free. I strongly urge readers to visit the Hastings Center website and read the most recent report. I have always been intrigued by the Hastings Center. It is a bioethics think tank that produces first rate scholarship. I do not always agree with what they publish--in fact I have strongly disagreed with some articles they have printed. However, even in disagreement I never questioned the academic integrity of what is produced. In addition, I have found such disagreement fruitful as it forced me to hone my views in response. Thus I am quite happy to see the work produced by the "Seattle Growth Attenuation and Ethics Working Group" in Seattle appear in the Hastings Center Report. It is my hope that the feature article and the responses will prompt a more nuanced debate about growth attenuation. To date, those for and opposed to growth attenuation have utterly failed to open a reasoned debate. While I am firmly opposed to the Ashley Treatment, I am willing to listen to its advocates. I only wish the same courtesy was extended to me and particularly those in what some people such as Norm Fost derisively refer to as the disability community.

The Hastings Center Report has published the following:

Feature article (subscription required)

Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns
Bejamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group

Responses (free):

Offense to Third Parties?
Norman Fost

Discrimination against Children with Cognitive Impairments?
Eva Feder Kittay

Against Fixing a Child—A Parent's View
Sue Swenson

In Support of the Ashley Treatment—A Parent's View
Sandy Walker

Another Voice (subscription)

Attenuated Thoughts
Alice Dreger

I will leave it up to the reader to assess the individual contributions above. What I will do however is briefly quote each response and my reaction.

First, the words of Norm Fost:

"We [the working group] heard about disagreement and distress because a caring set of parents, with consultation from competent physicians and the support of an experienced ethics committee, pursued a treatment plan that offended the personal beliefs of some individuals and groups about the treatment of people with disabilities."

Fost is correct, the Ashley Treatment" offended many people with and without disabilities. But he utterly misses the point that Ashley X civil rights were violated. This is not an opinion, this is a statement of fact, a legal fact in the Sate of Washington. What Fost objects to the most is "third party" intrusion. This too is not a tenable position.

Second, the words of Sandy Walker:

When Ashley’s story became public, I was surprised by the reaction of those who identify themselves as “advocates” of persons with disabilities and their families. They spoke of the “perspective of the disability community,” as though Ashley and her family were not a part of it. I felt disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family. I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.

This is profoundly disturbing comment. We, myself included, in the disability rights community have failed this woman and her family. This cannot be tolerated. While I do not have a child with a disability, I certainly understand the discrimination children and adults with cognitive deficits encounter is far more pronounced than what I experience. This is inherently wrong and we in the disability community much do more to reach these families. They should never feel so disenfranchised.

Third, the words of Sue Swenson:

We would never allow our son to be placed in an institution. Institutional placement of children or adults with profound disabilities—being shut away from the community, rather than engaged with it—is no longer considered an option in civilized places. Fortunately, family support and home- and community-based supports for adults offer modern alternatives. Family support—services whose aim is to help families nurture and enjoy their disabled child at home—helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.

I can only state my categorical agreement with the above.

Fourth the, the words of Eva Kittay:

The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory 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.

Forceful words eloquently and wonderfully stated. Kittay's response is sobering. A class of people has been set apart and are potentially subject to a "treatment" that would be deemed objectionable if they were ambulatory or did not have a cognitive deficit. What does this say about the way our society views such people?

What to make of all this? I think something productive can come out of what the Hastings Center has done. I suggest the center consider organizing a one day conference on the Ashley Treatment. I would use the prestige of the Hastings Center to force people with entrenched views to come together in a civil fashion. I think people like Douglas Diekema and Norm Fost need to listen to their fiercest critics in the disability rights community who they have ignored or dismissed out of hand. In return disability rights advocates must treat these men with respect regardless of our opposition. The Hastings Center Report is a step in the right direction but much works needs to be done. Alice Dreger grimy noted: "I was invited to join the Seattle Growth Attenuation and Ethics Working Group—collective author of the lead article in this issue of the Report—but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on." Rather than be "torn asunder" I think it is in our collective best interest to work together.

Posted by william Peace at 12:47 PM

Predicting Ashley

2010-05-12T14:51:00.010-04:00

Another questionable issue with growth attenuation involves the attempt by doctors to predict what a child's physical body will look like in adulthood. One must keep in mind that doctors will begin "counselling" parents about g.a. when the child is three years of age. This sort of crystal ball gazing was rampant among Ashley's parents and doctors. If you go to the parents' site (see sidebar), you will find everything below:

It was predicted Ashley's cognitive abilities would never change.
She has been at the same level of cognitive, mental and physical developmental ability since about three months of age. Ashley has aged and grown in size but her mental and physical abilities have remained and will remain those of an infant.

It was predicted her periods would be painful.
...we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort.

It was predicted her breasts would be large and uncomfortable.
Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage.

Her adult height and weight were predicted.
Normal growth would have resulted in an adult height in the neighborhood of 66" (5' 6")
the average weight of a 5' 6" woman is around 125 lbs,

It was predicted that her appendix would give her trouble.
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.

It is true that Ashley was showing signs of precocious puberty at six years of age (this is not unusual in the severely disabled population). That only meant that she would experience puberty. It does not make for more accurate predictions of the future of a child's body size, shape or type.

These predictions were done with lots of scientific equations, I'm certain, using height and weight charts and going way back into the family gene pool.

I would like to make a simple point here, using my own daughter as an example:

Father is 6 ft 2 in, 240 lbs and comes from very tall, heavy stock from both sides of his family.
Mother is 5 ft, 105 lbs, with shortness prevailing on the paternal side, but not on the maternal side.
Eldest daughter is 5 ft. 6 inches, 120 lbs.
How tall is Sophie? She is 5 feet tall...and is clearly finished most of her growing, if not all, since she has not changed height in over almost two years.

How much does Sophie weigh: 60 lbs

Sophie's cognitive ability was at one time assessed as "brain dead". Then it was assessed at "vegetable". Now, she can read, write, count, is aware of everything going on around her.....

I'm not going to go into breast size specifics here (!) only to say that it's all over the place in the female gene pool.
What about Sophie? Her secondary sexual characteristics are very minimal. She has very little hair and minimal breast growth.

Sophie's period has no predictable pattern. So far, she has had three periods in one year. They lasted one day and consisted of one small amount of discharge. This may indeed change, but she is now 16 years old. It is possible that Sophie's brain damage is playing a part in her physical development or lack thereof.

The appendix? Dad had his removed as an infant during emergency bowel surgery.
Mom's appendix...so far so good!
Sophie's appendix...well, it's still there...and has not exhibited any problems thus far.

My point is, quite simply, that predicting how a child will appear as an adult and using it as a justification for g.a. is risky, unscientific business.

Bill Peace's Conference Presentation

2010-04-26T13:19:00.002-04:00

The conference is alive and well...here's your chance to participate! You've got your reading cut out for you. Below is from Bill's site, "Bad Cripple".

On April 28 I will be participating in a conference entitled "Disability, Health Care & Ethics--What Really Matters". I am nervous and excited. I know what to expect when I meet up with anthropologists at such conferences. However, this conference is going to be made up of a diverse audience most of whom work within the realm of the ethics, science and medicine. How the audience will react to my strident position and words as they relate to the Ashley Treatment is a mystery to me. I just hope I make it home in one piece. For more on the conference see Life with a Severely Disabled Child (http://severedisabilitykid.blogspot.com/).

Below is a copy of what I will be presenting:

The Maryland Health Care Ethics Committee Network
And the Law & Health Care Program (L&HCP)
University of Maryland School of Law

Disability, Health Care & Ethics—What Really Matters

Wednesday, April 28, 2010
10:00 a.m.—6:30 p.m

1:00--2:15 p.m. Concurrent Sessions A

Lessons From the Ashley X Case

William J. Peace, PhD

When I heard about the Ashley X case via a disability rights podcast I was outraged. How I wondered could parents and doctors implement such a radical surgical intervention. Two subsequent thoughts went through mind: first, the Americans with Disabilities Act has utterly failed to fundamentally change American’s understanding of disability. The average American is as ignorant today about disability as they were almost twenty years ago when the ADA was passed into law. Second, I was deeply saddened that such a radical treatment was performed on a child with a profound cognitive and physical deficit. This highlighted not only my marginalization from American society but the profound discrimination people with intellectual disabilities currently encounter. Exclusion has remained a constant for “idiots”, “imbeciles”, and “incompetents”. While the words we use has changed significantly since 1900 and the notorious Buck v. Bell Supreme Court decision circa 1927 the deprivation of basic human rights has remained constant (Lombardo 2008). Many states retain laws that deny basic rights to those deemed “mentally incompetent” and even those individuals with adequate support often spend their adult life in poorly supported institutions. In short, I am talking about a group of American citizens, Ashley included, whose civil rights and now their bodily integrity are open to question.
In the last one hundred years many justifications have been used to deny civil rights to people with intellectual disabilities. In much the same way, those that promote the Ashley Treatment or growth attenuation have proposed many reasons for why such a radical intervention is ethically acceptable. The parallels between Buck V Bell and Ashley X are striking to me. They highlight the ethical conundrums involved in allowing or prohibiting the Ashley Treatment. Oliver Wendell Holmes Jr. determined people with intellectual disabilities to be “manifestly unfit” to exercise their rights. For Holmes the core issues were rationality, independence, economic productivity, and morality. For those that lacked the ability to meet these American norms and most importantly did not possess the ability to care for one’s self became lesser citizens. These “lesser citizens” forfeited their civil rights in exchange for care. Those providing care whether it be the state or family held great power. They alone made the decisions that were deemed to be in the best interests of their dependents. This sort of power over another human being is fraught with the potential for abuse and can bring out both the worst and best humanity and medicine has to offer.
I am not suggesting the discrimination people with intellectual disabilities encounter today is the same as what took place in the 1920s (Carey 2009) . My point is that assumptions of incompetence and dependence continue to be used to justify the deprivation of basic human rights for those who are intellectually disabled. Any effective ethics consultation related to the request for the Ashley Treatment must acknowledge that while the discrimination people with an intellectual disability is not as blatant as it once was such individuals are still perceived as somehow different, less human. By extension, then all people with a disability, whether it be Ashley or a person such as myself with a physical disability are at risk and remain one of the few groups of people whom legal discrimination is viewed as appropriate or perhaps socially acceptable.
I hope that my reference to the Buck v Bell case makes ethicist, doctors, and audience members uncomfortable. I have felt discomfort and vulnerable since reading about the Ashley X case. Beyond my personal feelings I think the Ashley Treatment is critically important because two extreme views exist. The doctors in Seattle that initiated the Ashley Treatment, notably Douglas Diekema and Norman Fost, and its proponents firmly believe they are helping one child and potentially many more. In contrast, people such as myself consider the Ashley Treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal, the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation yet the end result was sterilization. Each state has different laws with regard to sterilization many of which are contentious and contradictory. In fact the greatest controversy regarding sterilization pertain to people such as Ashley who are unable to consent. I am not suggesting that sterilization of people with profound cognitive disabilities is wrong—in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process” (Diekema 2003). These are the words of Douglas Diekema, Ashley’s physician and main proponent of the Ashley Treatment.
What ethics committees need to focus on are the facts, foremost among them is that growth attenuation or the Ashley Treatment involves sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history will reveal the inherent dangers of overlooking the sordid history of sterilization. For example, in Allan Chase’s The Legacy of Malthus writes that 63,678 people were compulsorily sterilized in America between 1907 and 1964 in the 30 states with such laws (Chase 1977). But there were hundreds of thousands more sterilizations that were nominally voluntary but in reality coerced. Chase quotes federal judge Gerhard Gesell as saying in 1974, in a suit brought on behalf of poor victims of involuntary sterilization, "Over the past few years an estimated 100,000 to 150,000 low-income persons have been sterilized annually by state and federal agencies."
What are the larger implications of the Ashley Treatment? The answer to this question is clear to me: the Ashley Treatment is about more than one girl in Seattle—it is about all people with a disability. We people with a disability are the other, a pervasive and important concept in the social sciences. The other are strangers, outcasts if you will, people who do not belong; they are perceived to be fundamentally different. The other often has fewer legal rights and experience gross violation of their civil rights. Thus at a fundamental level there is an us and them—those with a disability and those without. This is a false dichotomy but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important nor is the type of disability. We people with a perceived disability are simply the other. Given this, I do not consider myself one iota different from Ashley in spite of the great difference in our cognitive ability. In coining the term the Ashley Treatment doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed beings and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of people with a disability, particularly those like Ashley with a profound cognitive disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley need not be saved, surgically altered any more than me or the people listening in the audience.

Bibliography
Carey, Allison
2009 On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. Philadekphia: Temple University Press
Chase, Allan
1977 The Legacy of Malthus: The Social Costs of the New Scientific Racism. N.Y. Knopf.
Diekema, Douglas
2003 “Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis”. Mental Retardation and developmental Disabilities Research Review 9:21-26.
Lombardo, Paul A.
2008 Three Generations: No Imbeciles. Baltimore: John Hopkins University Press.

Conference Presentation

2010-04-26T13:15:00.002-04:00

Here's my bit that will be presented at the conference on video:

My name is Claire Roy and I am the parent of a child with severe, multiple physical and cognitive disabilities that she acquired due to a brain stem stroke when she was six years old. Based on MRI readings and the expert assessments of a paediatric neurologist and a neurosurgeon, we were told she was brain dead by the end of that day, and a request was made of us to donate her organs.

Today, at 15, Sophie is still very much alive.

Despite categorical assertions by physicians that this would be impossible, she understands what is going on around her. She can talk and answer questions but not really converse. Academically, she reads and writes slowly at around a grade 2 level. She still recognizes her numerals but she can’t do math. She is very fond of boys!

Though it was expected that she would be fully dependent on a g-tube all her life, she eats three meals a day, snacks and drinks...her g-tube remains for some fluid supplementation and medication only.

She cannot walk or hold up her body...though she can hold up her head. She still has the g-tube and a VP shunt. She has severe scoliosis, contractures in both her legs and left arm. She cannot use her left arm at all, nor can she move her legs in any way. She has dropped feet. She is incontinent. She has moderate tone. She suffers from pharyngeal spasm whereby she will just suddenly and unpredictably stop breathing...something from which she must be rescued. She has tonic clonic seizures from time to time, usually in connection with the spasm. She must be under 24 hour supervision as a result of the randomness and silent onset of the spasms, so I sleep in a bed beside her every night. In general, Sophie is hypersensitive to stimulation, so going on trips to the mall or even outside can turn into a nightmare of sensory discomfort for her. She is currently about 5 feet tall, and weighs 60 lbs.

Sophie is completely dependent on her caregivers for every aspect of her life, be it personal care or stimulation. She is, in that aspect, just like Ashley...so no one can accuse me of not knowing “what it’s like” to care for a child with severe disabilities...an accusation that is frequently levelled at those who criticize anything about G.A...yet I and other parents of severely disabled teens and children (born that way) with whom I am in contact are completely opposed to the Ashley “treatment”.

As a focus for this conference I was posed the following question:

What would you have said to Ashley X's parents or a similarly situated couple, and to the physicians involved, if you were a member of the ethics committee that reviewed the case?

I would have said, “Don’t do it.”

There are so many things to say about this from a parent’s perspective! Unfortunately, there isn’t time, so I will address what are to me, two critical issues. That which makes me most uncomfortable with g.a is that everything about this hinges on the child’s level of cognition. This is highly problematic. Secondly, there is incessant talk about how all of this is about benefitting Ashley and children like her; I will argue that the real reason behind it is written between the lines by the major players in the push for g.a.

To begin, then, a word about cognition. My daughter’s original prognosis, based on MRI scans, was death or “at best” vegetable...by highly respected neurologists and neurosurgeons. Her CT scans show obvious and extensive brain damage. When you meet my daughter, however, it is clear that she is neither dead, nor a vegetable. Indeed, she has quite a few skills which she should not have. Most surprisingly, she has maintained her personality...which, we were told, would be gone, based on the severe damage to her frontal lobes.

Secondly, in addressing issues about cognition, I must introduce the concept of neuroplasticity,

“the revolutionary discovery that the human brain can change itself...Without operations or medications, they (scientists) have made use of the brain’s hitherto unknown ability to change.” Norman Doidge M.D, The Brain that Changes Itself, (New York:Penguin Books, 2007) p.xvii

Doidge has written an entire book describing people who were able to restructure their damaged brains (whether acquired at birth or via injury) to function optimally or nearly so through various exercises. Ashley’s doctors are obviously old school.

My point then: the assertion that Ashley has the mental capacity of a baby and that this fact will never, ever change, cannot hold up to current scientific scrutiny. First, brain scans of any sort are, obviously, poor indicators of actual cognitive ability. Secondly, Ashley’s complete inability to talk or manage her limbs, make it impossible to properly ascertain her cognitive status. There are many examples of cognitive ability being underestimated, the most famous of which would include Christy Brown (Ireland, My Left Foot) and Anne McDonald (Australia, Annie’s Coming Out). Third point: the concept of neuroplasticity indicates that the brain, when subject to stimulation, does indeed change and can indeed improve. It may be possible, then, to increase Ashley’s cognitive abilities via appropriate and consistent stimulation...as was the case with my daughter.

For these reasons I repeat, “Don’t do it”.

Having said all of that, however, how is it that cognitive ability is the sole benchmark for assessing human value or ascertaining human rights in this situation?

Consider this, from Ashley’s parents’ site:

Some articles fail to clarify up front that our daughter is severely disabled, in a small and extreme category of disability, leaving their audience with the image of a mildly disabled girl...which would indeed make the Ashley Treatment shockingly inappropriate . (Welcome to Ashley’s Blog, Update January 9^th, 2007, #3, http://ashleytreatment.spaces.live.com/blog/ ) (emphasis mine)

The Ashley treatment, then, is shockingly inappropriate based on levels of cognition . My daughter went from being “normal” to being completely and utterly disabled, physically and cognitively, over a period of a few hours. One minute, then, the treatment was “shockingly inappropriate”... the next, “a new approach to an old dilemma”...? The rationale is quite straightforward; if you lose your cognitive ability, you are fair game for experimental treatments that someone, parent or expert, can impose upon you for your perceived benefit even to the point of ignoring established laws. In one fell swoop, I can say that my daughter’s right to bodily integrity was usurped by her decline in cognitive ability. Ladies and gentlemen, need I point out that this is very, very dangerous territory? Do you want to live in a world that can so easily dismiss your basic human rights? Is cognitive ability the only way to valuate human life? Is it not possible, too, that our assumptions as to what cognitive ability is, represent a far too narrow concept of thinking and thought processes? What do we truly know of the inner life of the severely disabled?

So I say it again...”Don’t do it.”

There is a great deal written about how this protocol is, in the end, all about helping Ashley (and children like her) have a better quality of life. They insist that those critical of g.a. are not facing facts and are, out of some knee jerk, emotional reaction, merely denying these children something that could really make their lives better.

I wish to argue that the good doctors have indicated by their very own words that the real benefit of the Ashley treatment is for society at large...

I want you to listen carefully to the next 3 quotes...

The primary benefit offered by growth attenuation is the potential to make caring for the child less burdensome and therefore more accessible. Diekema, Douglas, A., MD, MA and Gunther,Daniel F., “Attenuating Growth in Children with Profound Developmental Disability”, Arch Pediatr Adolesc Med. (2006) Vol. 160, p.1016.

“If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity...the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Institute for Ethics and Emerging Technologies , “Helping Families Care for the Helpless”, George Dvorsky Nov. 6, 2006, http://ieet.org/index.php/IEET/more/809/

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...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. (emphases mine) Scientific American: Christopher Mims, “The Pillow Angel Case: Three Bioethicists Weigh In”, Norman Fost @ 11:08 AM EST, http://www.scientificamerican.com/article.cfm?id=the-pillow-angel-case--th&page=2

In truth, then, g.a. benefits the caregivers by making their job less burdensome, it eliminates the grotesque view of “fertile” women with minds of babies and it will remove the scandal of having freak adults to look at, thus allowing society to more comfortably deal with the concept of cognitive disability.

Fundamentally, this is all about society’s...and, clearly, the medical profession’s...inability to deal with the sight of and responsibility for severely disabled individuals. There is nothing ethical about this treatment. It is just another example of discrimination...a surgical solution to society’s intense discomfort with disability.

And so I say to parents and doctors, “Don’t do it.”

My daughter was at one time a child like the majority. She became severely disabled. I love her no less now than before. I get no less pleasure from watching her grow up. As a matter of fact, her growing and changing into a young woman is a wonderful experience that I can say I share with all parents. It is her chance to develop into the person that she is...and she is a person, like we all are, with an inner life that I can only imagine.

Caring for a person with severe, multiple cognitive and physical disabilities is indeed very challenging. We parents are often tired. We are often pained and frustrated by the daily struggles for survival that our children face. It’s not an easy life...but it is worthwhile to work at providing for someone so vulnerable the best possible opportunities for their growth and development as very unique individuals. We are entrusted with these lives...just as all parents are entrusted with the lives of their children...and it is our duty and our fortune to take each day one at a time and protect them, care for them, honour them as they are, not as society wishes them to be. They have much to teach us and the world at large. Permanently attenuating the growth of these children is not an answer or a benefit. Our children are not “problems” or “dilemmas” to be mitigated. They are people to be reckoned with.

The Conference

2010-04-01T15:21:00.006-04:00

Well...here it is...the Conference. Do you remember me mentioning that I was going to a conference? It is in Baltimore, MD, on April 28th...you can see my name along with Bill Peace's at the 1 - 2:15 session....

'cept I wont be there! Damn. Suffice it to say, that life got in the way. And yes, I am horribly disappointed, and I won't get to meet Bill Peace either. Total bummer. All is not lost, however...I will actually be on video! Yessiree, the Luddite is going to have a 5 minute video presentation slot. Cool... It's not the same as being there...I recognize so many names of people whose work I have read...but, I still get to contribute...thanks to Anita Tarzian.

In any case...thanks for being here today. I will be working hard on a summative written piece next...which I may post...and getting the video situation set up. Wish me luck.

Assessing the "Ick" Factor

2010-03-15T21:27:00.003-04:00

If you have the time, I highly recommend this interesting piece: Ick! versus Ethics Part 1: the Infantilization of Ashley. It's short and very interesting. The point of the composition is to assess whether or not there is an actual ethical basis upon which to reject the Ashley "treatment", or whether the "ick factor" "leads the public to confuse personal revulsion with ethical judgement."

By applying certain "golden rules" of ethical judgment, it is said that it is possible to come to a conclusion...and they do...that even if the treatment appears barbaric it is not, technically, unethical.

I have to say that being a Religious Studies major puts me very close to being a philosophy student, which means I enjoy the sort of word play that comes with the territory of discussions of this sort. In the end, it's all about word play in the game of ethical analysis...

Now here's another perspective. Chapter 9 of "Ethics of Practices with Minors" is conveniently reproduced online. It addresses the Ashley story directly. It presents a very balanced view of the situation and comes up with this on page 190:

Whichever position one takes,Ashley’s case, like many of those in this book, demonstrates several hard facts for which ethical decision making offers little comfort: even sound decisions may be troubling or unpalatable, child-serving systems are flawed, resources are finite, and parents are imperfect.

"Ick vs. ethics" had a similar view, but came to a hard conclusion. This textbook, which is by all accounts one used to educate Social Workers, addresses several key areas of "imperfection" that make ethical decision making difficult: imperfection of solutions, systems, resources, and parents. The arguments are excellent, clear and forthright. I find that there is a theme running through each category which I think can be best summarized with this sentence:

When service delivery falls short of aspirations, the professionals,consumers, and citizens involved must provide the critical feedback and advocacy necessary to encourage change.This is not a short or easy process, but failing to do so signals capitulation to the status quo and to a lifetime spent facing the same dilemmas the flawed system is now creating. (p.191)

Ethical analyses cannot follow hard and fast rules in a world full of "imperfections". Neither should we accept the status quo on a situation that fundamentally arises from these imperfections. Sometimes, things have to change...current ethical structures may be too narrow to correctly define or embrace certain realities.

When it comes to the Ashley "treatment" "Ick vs. Ethic's" conclusion is too simplistic. In the end, I prefer their own observation about the whole thing:

We know the benefits that her treatment supposedly confers on Ashley, but where is the harm? If there is harm, it must be harm to us, and our respect for humanity. If we treat the human body with so little reverence that we are willing to mutilate and distort it for convenience, will this coarsen our culture and diminish our respect for all human life? If so, is that a fair price for us to pay to save Ashley from her bedsores? Do we want to live in a society that is not repulsed by the Ashley Treatment? What other attitudes would such a society embrace?

Exactly.

Moving

2010-02-19T16:46:00.001-05:00

I will continue to post in about three weeks...when we have completed our move.

2010-02-08T10:15:00.003-05:00

I wish to address, in this post, the issue of Ashley's level of cognition and how it relates to g.a. This is with reference to this previous post where Sara Goering remarks about discussions she had with parents where they "shared stories of how their children had matured in multiple ways...despite the official medical prognosis that they would remain at the cognitive level of a 6-month-old."

I go into some detail about cognition and its relevance to the valuation of human life here. At this juncture, I am more interested in talking about the certainty with which doctors make their prognoses about the cognitive level of children with severe, multiple physical challenges.

In the AJOB rejoinder "Growth Attenuation: Good Intentions, Bad Decision by Adrienne Asch and Anna Stubblefield, (AJOB 10(1):46-48, 2010), you can read the following:

Diekema and Fost's calculations underestimate the risk that Ashley may be more self-aware than they presume. When a child does not have access to a means of verbal communication and when her mobilty is severely impaired such that she may not be able to point clearly or manipulate objects, it is impossible to accurately determine her cognitive abilities. (p.47)

Precisely. More damning is the fact that both Fost and Diekema feel that g.a. would be inappropriate for children with "normal" cognitive function.

Diekema and Fost do not recommend growth attenuation for non-ambulatory children with typical cognitive development because, for these children the benefits would be outweighed by psychosocial disadvantages. (p.47)

OK...so Fost and Diekema would not do g.a. on a child with "normal" (or one could assume fairly "high") cognitive abilities but they insist that they are absolutely correct in theirs and others' assessment of Ashley's abilities:

We concede that certainty can never be achieved in medicine, but the issue about which they are concerned is not in dispute among any of the professionals who have evaluated Ashley. (Ashley Revisited: A Response to the Peer Commentaries, AJOB, 10(1): W4-W6, 2010, p.W4)

This said in spite of the fact that there's a fairly long history of underestimating the cognitive abilities of disabled people in general (which Asch and Stubblefield point out on p.47).

The arrogance of this position is mind-boggling. It is logically untenable. If an individual cannot willfully move themselves, it is impossible for them to communicate their cognitive abilities. Furthermore, the concept of cognition as static and never open to change or growth is equally nonsensical (consider the most recent developments in neuroplasticity). Brain scans are unreliable methods of assessing cognition as well. This I know from personal experience. Consider the fact that, based on my daughter's MRI results taken in the first hours after her stroke, the technician's report was to "harvest her organs". Consider the fact that a number of neurosurgeons and a neurologist...those wonderful experts...asserted that my daughter was brain dead. Consider the fact that, just under 10 years later (and obviously still alive), with CT scans that show her frontal lobe is fundamentally dead, my daughter is able to talk, write, read and respond fully to her environment. What of those expert opinions?

Of course, the fact of the matter is that, cognition or no cognition, g.a. is wrong, and Asch and Stubblefield say as much. Given the fact that the two good doctors oppose g.a. for normally cognitive children, however, and given the fact that individuals more qualified than they are have made serious errors in their assessments of cognition in the distant and recent past, g.a. shouldn't be carried out especially on children like Ashley. The margin of error is too great.

Longitudinal Wisdom

2010-02-05T10:33:00.005-05:00

Thanks to Bill Peace, I was given access to a number of rejoinders to "Ashley Revisited: A Response to Critics", an article by Fost and Diekema in AJOB (American Journal of Bioethics).

The responses were great...some things in particular stood out for me. The following paragraph is taken from AJOB, written by Sara Goering, entitled "Revisiting the Relevance of the Social Model of Disability" (AJOB 10: 1 54-55, 12 January 2010). It struck a chord. I hope it speaks to you.

I recently participated in a working group on the ethics of growth attenuation, and I was struck by the comments of the parents of children, now grown, who share the kinds of levels and impairments Ashley has. These parents shared stories on how their children had matured, in multiple ways, including preferences, and styles of interaction (see, e.g., Kittay and Kittay, 2007), despite the official medical prognosis that they would remain at the cognitive level of a six month old. Their reports demonstrate how even children with profound impairments develop over time and how rewarding it can be for parents to observe their children blossoming in their own ways, as their bodies and minds mature. Parents who are new to a child living with profound impairment will not have this longitudinal wisdom, and yet they would need to make decisions about growth attenuation quite early if it is to be effective.

There are two things in particular I want to address from this quote: the "longitudinal wisdom" of parents and the issue of cognition. The first I will address in this post, the latter, in another.

On Ashley's parents' site, it has been written that parents should receive "anticipatory guidance" for g.a. for their children at three years of age. It is believed that the "most benefit" would be achieved if the "treatment" begins as early as possible.

Three years into life with a child who has severe and multiple challenges is very early on in the game for parents, psychologically speaking. It took me at least two years to face the facts of my daughter's issues and several more to come to terms with the whole thing completely. Some parents may catch on sooner...some never do. The hospital setting, though, where our children spend an inordinate amount of time, is not conducive to hopeful or even balanced thinking about the realities of long term care. Indeed, the first few years of life are usually the most fraught with problems issuing directly from the child's disabilities. Parents have to jump from one hurdle to another, and are frequently faced with sudden and inexplicable changes in patterns of behaviour or health in their child. It is difficult, under these circumstances, to find the sort of mental space it takes to look at the big picture and imagine the many possibilities for the future.

In other words, within the context of the medical environment and the many challenges arising from the child's disabilities, g.a. can look like an attractive option, particularly if it is enthusiastically presented by so called "professionals" in the medical field. It is typical for these individuals to focus on the negative aspects of care, the costs financial, psychological and social, the physical burden and the suffering of the child. Indeed, Goering makes the following point:

My concern is rather that the people who will be making decisions about whether or not growth attenuation is appropriate may have no broader, non medical understanding of disability. If they all see the problem as primarily a medical one, the medical remedy will likely make the most sense. But awareness of a broader movement to change social norms, to ensure provision of high-quality car for people with impairments who will need long-term care, and to learn to respect individuals of all kinds as they are may alter their thinking. (p.55)

Parents of young children with severe and multiple challenges need to be in touch with other parents with grown children in a similar situation. I am lucky to have made these sorts of connections online via the blog...but it needs to be worked into hospital policy that parents seek out some sort of outside guidance before proceeding with decisions regarding g.a. This supposedly has been set up at the hospital where the "treatment" originated...but is that so elsewhere, where Ashley's parents claim the "treatment" has been carried out?

Truth be told, ladies and gentlemen, I have yet to meet a parent of a growing or grown child with any sort of challenge who finds this "treatment option" to be anything but appalling. Mind you, I certainly don't attract opposition in this regard with my views!! We love our kids as they are...and see them as whole individuals due the respect and protection any other child or adult would receive in society. We are never in denial of their physical or cognitive challenges, nor of their sufferings. We don't sing the praises of dirty diapers, flowing body fluids, medical bills or our own aching muscles. But...damn it...those kids are special and we love them so much! And we love them as we love our "typical" children, if we are so lucky as to have one or more of those as well. There's no difference there. The Ashley "treatment" is an assault on this integral whole that is the individual born to us. My daughter's life is not a "dilemma" that requires a "new solution". She is a person who requires assistance to get on with her life. That is my job...it is the job of parents...and it is the job of an enlightened society to help in that.

At the end of the day, perhaps some well-informed parents may see growth attenuation as a reasonable opton for their families, even as a way of respecting their child by doing what they can to include her as long s possible in family outings and in the family home. But many others will come to believe that respecting their child involves accepting her as she is, and working passionately with others to ensure that her needs are met and her flourishing is made possible. (p.55)

Profoundly Disabled Adults are "Freaks": Dr. Fost

2010-02-03T13:14:00.002-05:00

A very important site dedicated to the Ashley "treatment" is Huahima's blog "Mysteries and Questions Surrounding the Ashley X Case". Whoever huahima is, I can't get over the details that individual has access to. All I can say is "Thank you". I follow the site religiously and do my best to understand all the relevant material. Today's post is drawn from that blog...I hope, huahima that you don't mind...I have no idea how to contact you. Let me know if you disapprove.

I can't possibly keep track of everything that's out there about the case, though I do my best. My perspective, furthermore, is not so much academic in nature, but is from a parent's eye view. This stuff matters to me because it is very close to home. I worry about other children in other homes too. Parents need to know there are people out there who not only understand what they are going through, but that it is indeed possible to care for their children without resorting to the drastic measures proposed by some individuals.

In any case, what follows will not need a lot of explanation on my part. I hope you find it as unbelieveable as I do. Here is a direct quote from Dr. Fost himself, an individual known to be Dr. Diekema's "mentor"...the same doctor who is now vigorously promoting G.A. Here is what Fost has to say:

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. (emphasis mine) (Scientific American)

There you have it, ladies and gentlemen, in plain words. A doctor dealing with children with profound disabilities thinks severely disabled adults are FREAKS. And so the way to deal with society's "discomfort" is to mutilate the bodies of children.

The next time you read anything that tries to tell you that G.A. is about improving the quality of life of children with multiple challenges, remember this quote and understand very clearly that what this is REALLY about is improving the quality of life of everyone around these children. Do not be deceived. Less work, less trouble, less visual insult, no more freaks.

Do I really need to say more?

The Buck Starts Here: UPDATE!

2010-02-03T11:00:00.000-05:00

If you are new to the blog, all posts prior to this one are from my other blog. From this post on, everything will be new, and, of course, all about the Ashley X "treatment" and its implications.

It is only if every parent says NO to this group of growth attenuating procedures that this will stop. Unfortunately, it's out there now and that makes it harder to do so. Awareness must be built that this "treatment option" for children with severe disabilities is a violation of their human rights. We must also stand against any concept of "personhood" that challenges the notion that those with cognitive disabilities are somehow less human and not needing protection of their rights to grow up whole. We must be vigilant against the slippery slope that will not only further marginalize those with disabilities, but put them at risk of being surgically altered for caregivers' convenience at the hands of the medical establishment.

It's just plain wrong, people. It has to stop.

UPDATE!! Dr. William Peace of "Bad Cripple" has kindly allowed me to copy all of his "Ashley" posts onto the site as well! His perspective is highly valued. I recommend you take a look.

Playing God and the Ashley Treatment

2010-02-03T10:52:00.000-05:00

William Peace

In Diekema and Fost article, "Ashley Revisited: A Response to Critics", the authors seek to address 25 distinct and substantive ethical arguments that contend the Ashley Treatment is unethical. I was one of the critics supposedly engaged and summarily dismissed. This bothers me but not because I strenuously object to what was done to Ashley. I cannot get this article out my head because there is no effort on the part of Diekema and Fost to really engage their critics. This is frustrating in the extreme. The entire tone of their article is dismissive and to date I have refrained from objecting to how they framed what I wrote in my 2007 article, "Protest from a Bad Cripple", published by Counter Punch. I recently came across a quote from Diekema that has inspired me to directly address what they refer to as "Objection 12 You are playing God".

I did indeed write that Diekema and his deceased colleague, D. Gunther, were caught "playing God". In reply Diekema and Fost argue there are several problems with this argument. First, "if playing God refers to intervening with nature's or God's plan than all of medicine involves playing God". Second, "if we play God in offering certain interventions we also play God when we decide not to intervene". Third, "if God is responsible for Ashley's condition then he is also responsible for creating those with the ability to alter her condition".

Frankly, the reference to "playing God" was a throw away line meant to emphasize a point. And what was the point I was trying to get across? I will quote my next sentence, one that appeared in the second paragraph where I suspect Diekema and Fost stopped reading: "The Ashley Treatment affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond."

In retrospect I could have used a word other than "mutilate" but at the time I wrote the article I was furious. Then, as now, I considered the Ashley Treatment to be ethically questionable at best. My views have not changed appreciably. But to suggest that in some way I object to the Ashley Treatment due to the presence or absence of God is grossly misleading. Even if Diekema and Fost object to what I wrote they could at least direct their comments to substantive issues I raised. For instance, here is paragraph worth delving into:

"In choosing this course of action I consider the parents to be modern day Frankensteins or a perverse Modern Prometheus as Shelley’s 1818 classic novel was subtitled. In coining the term the Ashley Treatment and Pillow Angel doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of disabled people, particularly those like Ashley with a profound mental disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology and know how to prevent her from becoming Frankenstein--a developmentally disabled adult."

To their credit Diekema and Fost may have understood my point as they wrote "this argument is trying to convey the sense that decisions of this kind are arrogant". Yes, arrogant is a word that I think nicely fits Diekema and in particular Fost. They are arrogant in a way that gives doctors a bad reputation. Apparently decisions that led to the Ashley Treatment can "easily be made in humility". They suggest a "theological lens through which to view decisions like those made on behalf of Ashley is the notion of stewardship". Humility is about the last word I would associate Diekema and Fost with. But the notion of "stewardship" is likely closer to the truth. It is possible Diekema and Fost consider themselves stewards--stewards of the less fortunate. People like Ashley that don't talk back. How convenient for them. What they apparently don't like is when those they theoretically "steward", people like me, talk back. Let me be clear: they are the experts when it comes to caring for the human body. In contrast, my expertise lies in the cultural construction of disability and it ramifications. Ashley is impacted by her disability as am I. Yes, my cognitive ability is not impaired but that does not mean the bias, stigma, and social isolation I experience is any different from what Ashley and her family encounter. There are social solutions to this that Ashley's family and her doctors do not want to consider. This thought echoes a recent comment made by N. Tan ad I. Brassington in their article "Agency, Duties, and the Ashley Treatment" published in the Journal of Medical ethics (November 2009): "In a sense the wider Ashley Treatment-taking into account that it also involved a hysterectomy, appendectomy and breast bud removal to protect against problems of as yet unknown severity that might not appear anyway—might represent less of an attempt to meet the challenges of Ashley’s condition than an attempt not to have to meet them. At the very least, it is not obvious that the Ashley treatment was the only or even the best response to the challenge of caring for her.

Again, it is not clear that it would be acceptable to deal with most patients in this way: so, again, we might want to know whether and what different rules apply here".

What indeed are the rules that apply here? If the Ashley Treatment would not be considered for a so called normal child why are they socially and medically acceptable for Ashley? This is a discussion worth entering into, one Diekema and Fost have avoided via quotes taken out of context. But I suspect as Ashley's humble "stewards" they need not discuss such matters with a pesky crippled scholar such as myself. This is unfortunate as we people with a disability have much to say and share a lot in common with Ashley. She may lack the agency to understand such a debate but it does affect her life as well as mine. I wish Diekema and Fost were willing to listen an engage in this debate.

Ashley Treatment and the Parental Update

2010-02-03T10:49:00.000-05:00

William Peace

Ashley X parents have updated their blog. I know this because I have read the reactions at two sites: Mysteries and Questions Surrounding the Ashley Case (also posted at What Sorts of People) and Life with a Severely Disabled Child. I urge people to read these two reactions to the parental update. I am not surprised by what Ashley's parents have written. However, I am distressed by their continued salesmanship for such an ethically questionable "treatment". There is not doubt the parents think they have the answer for not only their daughter but all other so called "pillow angels". This term remains creepy years later and does nothing but divert attention from the meaty issues involved in the Ashley Treatment or what doctors involved now call growth attenuation.

I remain adamantly opposed to the Ashley Treatment. I would like to believe I am open minded on the subject. I keep reading, and hoping the major players involved, Douglas Diekema and Norman Fost among others will actually engage in a productive dialogue with those critical of the Ashley Treatment. To date, this has not happened in large part because, like Ashley's parents, they know they have the one and only answer to treating children with profound physical and cognitive disabilities. Critical views are read and dismissed. There is no real effort to engage in a nuanced debate and disability rights activists such as myself are quoted out of context or characterized as being driven by a political agenda. Ashley's parents views are even more strident. While I may disagree with people such as Diekema and Fost nor are my concerns regarding the ethics involved allayed by their work at least they make the pretense of engaging with others. Ashley's parents in contrast are not content with attenuating the growth of their child. They are now akin to the used car salesmen of growth attenuation. I have tried to be restrained in my criticism of Ashley's parents but the latest update to their blog, January 13 third anniversary, was disheartening and biased in the extreme. Ashley's parents raise six bulleted points:

1. Ashley has a significant scoliosis, a curve of 56 degrees that has been stable for the last 14 months. If her scoliosis gets worse, to 75 degrees, surgery to straighten her spine and protect her organs will be required. The lack of progression of her scoliosis has lead her parents to wonder if growth attenuation has slowed its development. This is pure speculation. Scoliosis treatment has changed radically in the last four decades. As one who spent years in braces and eventually had scoliosis surgery I am well aware much of what was done to me decades ago could be considered experimental. Science has advanced as has the treatment of scoliosis but there is by no means a definitive course of treatment. To suggest growth attenuation slows the progression of scoliosis is misleading if not irresponsible.

2. Ashley's parents report that a dozen parents from all over the world have contacted them and reported their children (boys and girls) have had the Ashley Treatment. No country or countries of origin is identified. The parents also maintain that some hospitals have provided treatment while others have not. They refer to a case where the hospital ethics committee approved the treatment but hospital officials declined citing public relations concerns. These statement are dubious. For instance, they make a point to mention that both boys and girls have received the Ashley Treatment. To the best of my knowledge, no doctor, including Diekema, has suggested growth attenuation was a viable option for males. As for for hospital administrators declining to perform the Ashley Treatment because of adverse public relations seems misleading. I suspect the truth is that it is legally difficult to sterilize a minor. The laws in this regard are quite strict (not that they helped Ashley). Moreover, if the Ashley Case was looked at as setting a precedent lawyers would surely be aware of the added safeguards agreed to by the hospital and WPAS.

3. The parents refer to a 2008 panel on growth attenuation at a pediatric conference held in Hawaii. For more on this see the Mysteries Surrounding the Ashley Case website. The parents state most people attending this conference and panel in particular were in favor of growth attenuation. This may or may not be true. The parents were not present nor was I. They seem to rely on the private email from an unnamed physician present. It is worth pointing out here that the panelists included David B Allen, Douglas Diekema, Norman Fost, and Michal Kappy. All four have written and are outspoken proponents of the Ashley Treatment. These men can hardly be considered an unbiased source.

4. According to the parents, at the 2009 Treuman Katz Center for Pediatric Bioethics Diekema stated that the ethics committee at two major children hospitals have investigated growth attenuation and concluded there was no ethical reasons why the treatment could not be performed. If this is true, why did Diekema not identify the hospitals by name? This could only lend more credence to his position. Is it possible he exaggerated to make a point? Is this claim true?

5. The parents refer to an article in Pediatrics entitled "Growth Attenuation Therapy" noting that two pediatric endocrinologists and two bioethicists are in favor of the Ashley Treatment. This is correct and misleading at the same time. The people they are referring to are none other than Allen, Diekema, Fost and Kappy. The same men who were in Hawaii to present their findings.

6. The parents refer to an article in the American Journal of Bioethics, "Ashley Revisted", by Diekema and Fost that I have already critiqued on my blog. This paper is dreadful and utterly failed to do what it set out to do--engage critics of the Ashley Treatment. What the parents do not mention is the devastating rejoinders that accompanied the AJOB article. As is the custom for AJOB, critics had a chance to reply to the target article. Of the nine people that replied, I would consider eight sharply critical. The authors of these critiques are a diverse group and their comments worth serious consideration.

I did not expect Ashley's parents to suddenly be balanced when they updated their blog. But their rigorous and unrelenting sales job for growth attenuation is hard to understand. They had their proverbial fifteen minutes of fame and were on Larry King. What more do they want? Such updates come across badly, as though they are slapping themselves on the back for a job well done. What the parents have done is make some inroads among four men--Allen, Diekema, Fost and Kappy. All their references in medical journals refer to these men alone. No mention is made of a single critic. Hundreds of "supportive" and private emails are referred to on their blog yet not a single critic is identified or worthy of passing reference. One possible explanation for this is the fact the parents accept without question a medical model of disability. That is their daughter's problem is a physical and cognitive deficit. This is of course correct but the solution to the issues need not be met with a radical surgical solution. Doctors under a medical model of disability are the "experts" and this is true provided this expertise is limited to the human body. When it comes to the social ramifications of disability I have a far greater understanding than most people, including Ashley's doctors. I have spent much of my adult life thinking about disability and its meaning inside and outside of a hospital. I do not mean to dismiss the profound consequences of Ashley's disabilities but rather know that many of the issues she and her parents will encounter have well established solutions. They appear to me to not like these solutions and have instead distanced themselves from the very people who could provide answers to the dilemmas they will encounter. In short, Ashley's parents and their most recent update reveals they are hopelessly misguided. This is sad, a social failure if you will, and one I hope will not delude other parents into making a comparable mistake.

The Ashley Treatment in AJOB

2010-02-03T10:48:00.000-05:00

William Peace

Last October I wrote about the latest article set to be published about the Ashley Treatment by Doug Diekema and Norman Fost. Here I refer to "Ashley Revisited: A Response to Critics". Well, the paper has just been published by the American Journal of Bioethics, AJOB, in its latest issue (V. 10, #1 January 2010). This was a dreadful paper when I read it months ago and it remains dreadful today. I need not rehash my criticism I posted in October despite the fact I am tempted to do so. What is of interest is the Open Peer Commentary. Nine scholars wrote short replies to the target article by Diekema and Fost. Of these nine commentaries I would consider one supportive and the other eight critical. It will take me a few days to assimilate all the critics various viewpoints. Suffice it to say I am delighted by the sharply critical replies. Most of the commentaries are polite to a fault but one stands out for the severity and tone of its critique. Here I refer to John Lantos, "It's Not Growth Attenuation It's Sterilization!" I do not know Lantos who works at Children's Mercy Hospital nor have I ever read a word he wrote but the man can write that's for sure.

Lantos appropriately praises Diekema for his 2003 paper "Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis" that reviewed the controversial issue with a checkered past. The fact Diekema wrote this paper is fascinating as he of all people should have been acutely aware of the legal and moral issues involved in sterilizing a child like Ashley. Lantos points out Ashley's doctors should have sought a judicial review and the fact this was not done was a "major, inexplicable, and damning transgression". Worse yet, Diekema and Fost now defend that course of action or inaction. Others have raised this point and focused on the procedural violation but Lantos has a fascinating point to add: "The case becomes an example of arrogance and secretiveness by doctors and hospitals. It reinforces, rather than challenges, the strong societal prohibitions on sterilization for children like Ashley". Lantos also argues that the title of Diekema and Gunther original paper was misleading, an effort to get people not to look too closely to what was done, especially the removal of Ashley's breast buds. Lantos suggests that the original paper, "Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma" should have been titled "Attenuating Growth, Involuntary Sterilization, and Prophylactic Mastectomy in Children with Profound Disability: A New Approach". Ouch, that one hurts!

After reading all the commentaries about which I will have more to say in another post I was struck by Diekema and Fost staunch defense. They clearly believe they have done nothing wrong and that there are no flaws of any sort in their line of reasoning. Critics, especially those in the disability rights field are driven by ideology rather than factual information. This is not only wrong but ironic in that many errors in fact and contradictory statements have been made by Diekema and Fost since 2007. People such as Dick Sobsey and others have pointed out such factual errors. For more information in this regard read the excellent posts on What Sorts of People. What I find amazing is that an institution like Seattle Children Hospital can admit it made mistakes, state this publicly and yet Diekema and Fost cannot admit to any error or mistakes. Perfection I suppose must be a wonderful thing. Too bad we humans are incapable of this--even Diekema and Fost.

The Law and the Ashley Treatment

2010-02-03T10:43:00.001-05:00

William Peace

Solidarity. Solidarity is something people with a disability lack. We people with a disability lack solidarity among ourselves. People with a disability have little or no support from the general population. Worse yet, those unfamiliar with disability too often think disability is about a medical condition or physical deficit alone. Rarely if ever does the average citizen connect disability rights and civil rights as one in the same. Thus when I state there is no difference between myself and all other people with a disability I am looked at as though I have two heads. Puzzlement is compounded when I maintain there is no difference between myself, a middle aged man with a PhD from Ashley X who is profoundly disabled physically and cognitively. I am often asked why I hold such a "radical viewpoint". My views are steeped in not just disability identity but a thorough understanding of past abuses. Think here of Eugenics, Euthanasia of people with disabilities, forced institutionalization, ugly laws at the turn of the century etc. These travesties of justice have been on my mind ever since I read a long and frightening article by Christine Ryan (Revisiting the Legal Standards that Govern Requests to Sterilize Profoundly Incompetent Children: In Light of the Ashley Treatment, Is a New Standard Appropriate"). Ryan's article is hard to read for a layman and I am not by any stretch of the imagination a legal scholar. In fact Ryan's article reminds me of a Popular Mechanics article circa 1945. There is an interesting introduction, a long highly technical body of the article, and a pithy conclusion with long lasting implications. The conclusion Ryan reached gave my crippled body the chills. She wrote:

The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)

Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.

In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":

The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.

Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.

The Ashley Treatment Yet Again

2010-02-03T10:38:00.001-05:00

William Peace

Readers that have followed this blog for a while know that I continue to keep up to date on the Ashley Treatment. I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media's pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled "Ashley Revisited: A Response to Critics" by Douglas Diekema and Norman Fost.

Let me be clear: the essay by Diekema and Fost is dreadful--unworthy of publication in any respected academic journal. I have submitted an abstract for an Open Peer Commentary in AJOB that is ever so polite. I gritted my teeth when submitting the abstract but doubt I will be asked to submit a commentary between 500 and 1500 words. My words here will not be nice or polite. For I know the pesky words of this and any other bad cripple are surely unwanted. The supposed aim of Diekema and Fost was to catalogue critical commentary "for the purpose of evaluating them. In doing so, we hope to facilitate a substantive discussion on the issues raised by the Ashley case that goes beyond assertions, over simplifications, opinion and emotion." Diekema and Fost identify 25 objections and break them up into different groups. This sounds great but the results are less than satisfactory to say the least. The authors write like petulant children angry with their parents for sending them to bed without dessert. How dare people object to the Ashley Treatment! We listened to the pleas emanating from the lips of Ashley's loving parents and devised a treatment for her benefit. No critics have formulated an argument that will deter us from helping Ashley and other children like her. This intervention must proceed because we know this is the one and only answer. This sort of knowledge, so certain, so sure, is not possible and if assumed to be true down rights dangerous. If you doubt me think Eugenics in this country, an approach approved by none other than the Supreme Court.

I find the authors obvious outrage and approach to critics ironic in that they have assembled many different phrases from a host of publications that are devoid of substance. Any and all criticism is dismissed and is based on an emotional argument, rhetoric, distortion, confusion, or politics. Take your pick critics are wrong, wrong, wrong. This is not scholarship but rather an effort to silence the overwhelming number of people inside and outside of medicine that object to the Ashley Treatment. To accomplish this the authors have assembled a long list of objections that appear to be power point driven or a collection of notes. Slide one, objection one reduced to a single line. Four subsequent points are made in less than a page. If a graduate student submitted this sort of paper to me I would give it a failing grade or tell him/her to write a real paper.

Let me provide one specific example of where the authors went terribly wrong and are misleading. Before I do this I want to note that this example does not concern the authors dismissal of my article published in Counter Punch or the way they reduced what I argued to a single phrase. Under "Objection 19" the authors list "Disability rights activists disagree" with the interventions in the Ashley Case. They authors identify four flaws made by disability activists and dismiss any notion the Ashley Treatment as morally wrong. The authors think disability activists are driven by an ideological argument and that advocacy groups do not in any way represent the parents or best interests of Ashley. Moreover, such argument are made by people with physical or moderate cognitive disabilities and are totally different from Ashley. For some this may pass as reasoned analysis but scratch the surface and profound flaws emerge. The authors write "several disability rights groups" opposed the Ashley Treatment and list five examples. A quick look on line reveals that more than "several" groups opposed the Ashley Treatment. I quickly came up with a list of over 150 disability groups that opposed the Ashley Treatment. This list includes at least one group from every state in America, every Canadian province, and countries such as England, New Zealand, Austria, Australia, Belgium, China, Korea, Norway, Poland and the list goes on and on. Surely one of these groups not to mention the hundreds of people that wrote articles, blogs, and commentaries that were published from a "disability rights" perspective made one or two good points. In short, a disability perspective is dismissed out of hand and the bibliography contains a dearth of source material from such a viewpoint. This is not just faulty reasoning but terrible and misleading scholarship.

What I find most troubling about the article by Diekema and Fost is their arrogance. The paper in question may state they seek to engage the critics of the Ashley Treatment but reality as they present it is something entirely different. There is no willingness to acknowledge much less negotiate differences of opinion. The Ashley Treatment is a viable treatment option. No argument presented can sway the authors from their beliefs. The single minded determination they display is, I hope, out of the norm. It certainly does not reflect my experience with the medical establishment. I have found most doctors that propose controversial treatment options to be critically attuned to any and all objections. And this what strikes me as so unusual about the Ashley Treatment. Diekema and Fost are not willing to listen to any reasoned objection regardless of where it comes from. They are right and all critics are wrong. Life is not that absolute and certainly no medical treatment as controversial as the Ashley Treatment lends itself to a black and white view of the world.

Growth Attenuation: Ethics of Treatment

2010-02-03T10:29:00.000-05:00

William Peace

In 2006 and 2007 I published two articles about the Ashley Treatment in Counter Punch. The articles generated a tremendous amount of email--as in hundreds upon hundreds of replies. Most email I received was positive but a few were shockingly mean spirited and bordered on hate mail. What I learned in the days after I wrote the articles in Counter Punch about the Ashley Treatment and growth attenuation was that people had a violent reaction to the subject. People were either opposed to what had been done to Ashley, that is they thought the child was mutilated by doctors, or believed it was perfectly logical and reasonable medical treatment. This juxtaposition of extreme views has always intrigued me and I have followed the Ashley Treatment as it has evolved sine 2006 when the story exploded in the news. I have tried to understand both sides of the debate, and there are only two sides--those for and those opposed to the treatment. No middle ground exists.

I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:

1. Nonambulatory children with profound cognitive disabilities.
2. Growth attenuation should be given the equal respect with growth promoting therapy.
3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.
4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.
5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.
6. Ethics committee review before growth attenuation treatment.
7. Growth attenuation should be part of a research protocol.

I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:

1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.

2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.

3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".

4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.

5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.

6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.

None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.

Ashley X and Katie Thorpe and a Cultural Divide

2010-02-03T10:26:00.001-05:00

William Peace

The debate surrounding the removal of Katie Thorpe' uterus has entered week two in the UK. Newspapers such as the Guardian, Independent, Daily Mail, and the BBC News have all published articles. Based on my reading about the case in a different country three thousand miles away I am struck by three things:

First, the mainstream British media, like their brethren in this country, do not understand disability rights. If they did, someone would have pointed out the obvious: it is not acceptable to modify and mutilate Katie's body. Katie has rights and her mother is requesting her daughter undergo a major surgical procedure that is not medically necessary. Like all people her age, Katie has the right to grow up with her body left intact. Alison Thorpe knows this as do the doctors willing to perform the surgery. Thus this case raises deeply troubling medical ethics foremost among them trying to use a surgical procedure to solve a problem that is social. As noted by Andy Rickell of Scope, an advocacy organization for people with cerebal palsy in the New Statesman on October 9 that "we do not believe that a child should be modified for society's convenience, but instead that society needs to adapt and become more inclusive of disabled people".

Second, Katie's mother has given a number of interviews and her choice of words leaves much to be desired. For example in the Daily Mail October 12 story "The humbling true story of why this mother wants her disabled daughter to have her womb removed" she commented that "there is no doubt it would have been better for Katie if she had died at birth". Alison also said she felt as though "looking after a disabled child is like serving a life sentence". Comments such as these are offensive and degrading to Katie Thorpe and show a stunning lack of awareness with regard to the rights of disabled people.

Third, articles about Katie Thorpe focus on her care and the degree to which her mother's life is not just compromised but consumed by endless drudgery. Katie's mother, Alison, and her partner, Peter, are Katie's primary care givers. Alison Thorpe has revealed intimate details about her daughter's life and exactly what is involved. The portrait painted is not pretty. There is no question Alison Thorpe is dedicated to her child and overwhelmed by her needs. However, I am struck by what I see as a major disconnect: the problems involved in Katie Thorpe's care are not medical. Surgery will prevent Katie from menstruating but I do not see how this will make caring for her any easier. Katie will continue to need care at all times and surgery will not change this fact. The problem Katie's mother has is a lack of support. Why has she not slept though the night for the last 15 years? Why has she been left alone to care for her daughte? What does this lack of support say about society and the degree to which the lives of disabled people are valued? No parent should speculate that it would have been better if their child died a birth--this is a social tragedy that need not occur and I wish the correct questions and issues were being discussed.

Peace: Ashley X Story Becomes More Depressing

2010-02-03T10:24:00.001-05:00

William Peace

Daniel F. Gunther, physician at Children's Hospital in Seattle and primary proponent of the Ashley Treatment, committed suicide. As reported in the Seattle Times today, the family believes a history of depression was the reason for the suicide. Colleagues and family members said the Ashley Treatment had nothing to do with his decision to end his life. According to colleague Dr. Doug Diekema, he considered Gunther to be "a hero for standing up for families" and "without whose courage, confidence, knowledge, open-mindedness and unwavering support the [Ashley] Treatment woud not have been realized"

Like many others I was severely critical of the Ashley Treatment, Gunther and Doug Diekema. In spite of my criticism, I am deeply sorry to learn about Gunther's death. My heart goes out to his family, friends and colleagues. I was also sorry to learn that Gunther was subjected to harrassment when the Ashley Treatment became a media sensation. It is one thing to disagree but something else entirely to harrass a fellow human.

I remain adamently opposed to the Ashley Treatment. For me, Gunther's death highlights the overwhelmingly depressing nature of the Ashley Treatment. I wish his family well and offer them my condolences.

Peace: Ashley Treatment Again

2010-02-03T10:16:00.001-05:00

I wrote about the Ashley Treatment in January and May for Counter Punch. Like many other people with a disability I was shocked and outraged that doctors would remove the uterus, appendix, spleen, and breast buds buds of a disabled girl. I was somewhat encouraged when the so called "Ashley Treatment" and the sterilization of Ashley X was declared unlawful by the Washington Protection and Advocacy System (WPAS). Surely no doctor would contemplate such an invasive, unnecessary, and ethically questionable treatment. Based on what was abuzz on the internet via parenting and disability rights blogs for many months this year no parent of a disabled girl would request the Ashley Treatment. I am quite wrong on both fronts. To this I can add the mainsteam media appears to be oblivious of the multitude of complaints disability rights activists have posted and acted upon on both sides of the Atlantic Ocean.

According to the UK Timesonline October 7 Alison Thorpe, mother of Katie, "a victim of severe cerebal palsy" has requested doctors "remove her womb" and appendix. To this end, Ms. Thorpe has consulted with Phil Roberts, a consultant at St. Johns Hospital in Chelsford, Esssex. Doctors are now consulting with lawyers to determine if they can sterilize Ms. Thorpe's daughter. Mainstream media outlets in the US failed to understand the broader implications of the Ashley Treatment and it appears the press in the UK is not better. The UK Times noted "the treatment would not be carried out on able bodied people" and that "even some disabled campaigners are critical of them" This sort of reporting is not just bad it borders on offensive. British and American disability rights activists were extremely critical and remain adamently opposed to the Ashley Treatment. Don't take my word for it, look it up on the internet and see for yourself.

I maintain the Ashley Treatment is one of the grossest violations of human rights. Katie's mother uses the same warped logic that Ashley's parents did to enable and empower them to mutilate their daughter. It is as though these parents think a person with a profound physical and mental disability never existed before. Happily unaware and hopelessly selfish, they have sought out a medical solution to a problem that is entirely social. The fact is disabled people are perceived to be less human and valued. What happens when parents of disabled children are critiqued? They mainstain critics have no conception of what it is like to care for disabled chidren. Give me a break. Perhaps parents that are considering the Ashley Treatment or those that think it is an appropriate course of action consider disabled people, all diabled people, are human. We crippled humans have rights even if we cannot articulate them. Just because one cannot see, hear, speak, or walk does not place us in a different sub-human category.

In the coming days I will eagerly follow what disability rights activists have to say. They need to act without delay as the institutional bias against the rights of disabled people are constantly being eroded away. One need only consider the sad state of the ADA and the way the Supreme Court in this country has narrrowed the law to the point of irrelevance. I sincerely hope my peers in the UK, especially the Disabled People's Movement, fare better. At least this time, there is a chance that a girl will not be subjected to needless surgery.

William Peace

Passing Through the Eye of the Needle...

2010-02-01T12:22:00.000-05:00

Jesus said...it is easier for a camel to pass through a needle's eye than for a rich man to enter the kingdom of God.
Matthew 19:23-24

There is no greater love than this: to lay down one's life for one's friends...
John 15:13

Of course, I think alot about Ashley X's parents. I wonder about how they think...and just yesterday, I wondered about that day, that day when they realized that this child they had was going to change their lives...that they were going to have to make changes in the way they live their lives. I wonder that it scared them to death, scared them enough to decide that it might be easier to change their daughter instead and to carry on as usual...

I remember clearly the day it all hit me...I was still teaching at the time. We were about two years into coping with Sophie's newly acquired disabilities. Class was finished and I walked out onto the front steps of the school and sat down. I put my face in my hands and I cried and cried. I cried alot.

There was something about being surrounded by all those robust little kids full of beans that stood in sharp contrast to what was going on at home with my own daughter. There was, too, the fact that I was very tired from the non-stop work and stress of living two lives.

I knew that day that I was going to have to change my life. I knew that nothing was ever going to be the same and to pretend that it could be was an illusion even the most creative of individuals could not perpetuate in their mind. I knew that the longer I resisted the reality that stared me in the face day after day, the faster I would deteriorate into a tired, angry, frustrated human being.

I am a will-full woman. I don't always choose to put it into force, but once engaged, my will is somewhat akin to a force of nature. That day, I cried, I faced what had to be faced, I got up and moved on....in a new direction. Not long after that, I quit a job that I was in love with, that I swore I would do 'til the day I died, and began taking over my daughter's care.

What has happened in the years since has been a slow, consistent burn-off of everything I thought I was, into what I am now. It has, at times, been a very painful transition, and every time I think I've acquired a modicum of balance and Buddhattude, something comes along to remind me that I still have along way to go. I have reached a point where I welcome these molding forces, this stripping down and re-building. It has lead, invariably, to better things and a genuine way of being.

Our North American world is one of wealth and entitlement. We have been programmed to believe that we deserve, or at least should have, everything we want. If we are personally wealthy, we believe we have worked to achieve it and so deserve to spend it as we see fit, whether on a half-dozen homes or lunch at a pet cafe for our dogs. Those who don't have wealth are forced to stare at that which they cannot have and yearn and crave, beg, borrow and steal to possess those things which are perceived to bring fulfillment and satisfaction. Within our wealthy nations, our poor suffer doubly from the genuine inadequacies of their existence and the force fed belief that what will make them happy can be found in a store front bloated with stuff.

In the end, it takes some serious work to abandon these perspectives and to imagine that to give up one's life to care for a child/adult with disabilities has value and can bring joy, peace and fulfillment. It's difficult to believe that one can be happy pursuing to satisfy the real needs of another in favour of those imagined needs of the self.

This is not to say that help, respite and funding are not necessary to caregivers. They are essential because the demands of caring for another draw from the body as well as from the mind and soul. It behooves society to assist in this, to partake in this enrichment of the spirit as opposed to that of the pocketbook. These people who call upon us to empty ourselves are the leaven of our world...though they do not dominate in population, they do in power to transform, to uplift and to love. We are lucky to have them among us to keep us humble and whole. When we choose to look away and shirk our responsibilities, we do so to our own detriment.

Legal Possibilities of Ashley Treatment in Canada

2010-02-01T12:20:00.000-05:00

Reflections on
The Legal Status of Sterilization in Contemporary Canada
By
Clémentine Sallée
Institute of Comparative Law McGill University Montréal,
Canada

A thesis submitted to the Faculty of Graduate Studies and Research
in partial fulfillment of the requirements for the degree of Master of Laws

© Clémentine S. H. Sallée, 2002

Noted above is the paper that I read in an attempt to ascertain how the Ashley "treatment" would fare, legally, in Canada. Unfortunately, I do not have the time to read primary legal documents about sterilization...so I had to settle for a secondary document...but it's a damn good one!! It has a bit of history, lots of good footnotes and some assessment at the end...though it's one person's opinion. I was lucky to be able to find such a comprehensive paper online.

Now, I am going to attempt to put together a few puzzle pieces on the issue of the legality of the Ashley "treatment" in Canada. I am NOT a lawyer in any way, shape or form...and I certainly am not arrogant enough to claim that what I am about to say has any validity...but, I think logic can prevail here and I can get a sense of it. I WELCOME, INVITE, OH PLEEEASE, any Canadian lawyer to comment...please don't laugh at me.

I have read a number of legal papers that have an American perspective...there are many of them available, because the "treatment" happened in the U.S. and stirred most of the debate there. There is nothing about the treatment...as far as I could find...in any law papers in Canada. So I went with the general topic of sterilization because this is one aspect of G.A. that has a long legal history behind it, and was the main point of contention with the case.

In point form, here are some ideas:

* As in the U.S., parents have almost complete "control" when it comes to decision making for their children when it comes to medical issues.

As held by La Forest 1. in B. (R.) v.

Children 's Aid Society of Metropolitan Toronto "we must accept that parents can, at

times, make decisions contrary to their children's wishes and rights as long as they do

not exceed the threshold dictated by public policy, in its broad conception. This explains why parental authority extends beyond purely therapeutic acts to coyer nontherapeutic

care, notably trivial medical acts such as orthodontic treatments or blood

testing. p.77
Notable exceptions:
Even though parents are invested with the authority to consent to their children's medical treatment, this power is not absolute and the state will be allowed to intervene when necessary. p.77 A child in the care of a person who neglects or refuses to provide or obtain proper medical, or other remedial care or treatment necessary for the health or well-being of the child or refuses such care or treatment to be supplied to the child when it is recommended by a duly qualified practitioner. p.78
is considered a child "in need of protection" and the state is then allowed to intervene.
* The conclusion:
Thus according to that article, non-therapeutic sterilization when performed on

an incompetent individual or a minor is not prohibited; however both the authorization

of the court and that of the substitute decision-maker are needed, as non-therapeutic

sterilization is not only a treatment not required by the person's state of health but is

also a type of care which has permanent effects, depriving the person of his/her ability

to procreate. p.92

* It is interesting to note, here, though, that, in Ontario:

lnitially, in Ontario, the Legislature was presented with a bill, Bill 108, Substitute

Decisions Act, 1991, which not only prohibited altemate decision-makers from

giving their consent to the performance of non-therapeutic sterilization as held in the

Re Eve case but also to any "sterilization that is not necessary for the performance of

the person's physical health". This bill was therefore going further than the

Supreme Court which had defined therapeutic purposes as encompassing physical

and mental health considerations. The proposed section was amended and the statute

enacted left untouched the law conceming "sterilization that is not medically

necessary for the protection of the person's health,,521. Ontario bas thus codified Re

Eve. p.113

The above, however, is only relative to adults.

*Also of interest is the following:

Mental disability is not in itself conclusive of the

legal incompetence of an individual, no presumption of incompetence is attached to

people who are mentally disabled. p.39

OK...so...what do we make of it? Let's say two biological parents of a child with disabilities similar to Ashley's...divorced...came into conflict. The parents have joint custody. Mother wants G.A., father does not want G.A. This is likely the only way the procedures would get into court. What would happen then?

It looks like, if the parents agreed on G.A., it would go through. One problem with G.A. is that it is a group of procedures with one end in mind. The hysterectomy, it can be argued, is not necessarily about sterilization, but about an aspect of a "treatment" ...like cancer treatment can involve surgery, chemo and radiation therapies. It's lumped together. Indeed, this is how Ashley's parents and the hospital "ethics" committee got away with this whole thing in the first place.

There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, sterilization is a side effect of the Ashley Treatment and not its intent. Ashley site

If the parents maintained their disagreement, what might happen? To get the courts to stop the procedure, a lawyer might focus on the note above that states that mental disability is not in itself conclusive of legal incompetence. It could be argued that it is not possible to ascertain the child's mental capacity at such a young age (the procedure is set to begin at 3 years of age). It might be possible to get a "medical expert" to present facts about the difficulty of ascertaining mental capacity in an individual with severe, multiple physical challenges, and provide examples of cases where individuals were fully cognizant, but unable to express that until, say, the introduction of something like a computer or bliss board when they were older (and such examples do exist today).

A lawyer could attempt to argue that the procedures are detrimental to the well-being of the child...that they are not medically necessary to the health and well-being of the child. Unfortunately for that angle, the concept of "health and well-being", though at one time was defined strictly in medical terms, has, in some provinces, been broadened to include "mental health", which the Ashley procedures claim to enhance.

I think that there's almost no way to completely block the G.A. The best argument would have to be that, if one parent is willing to care for the child "intact", then the procedures should be avoided on that basis. The procedures are irreversible and represent a violation of bodily integrity with questionable benefits. The problem with this direction, however, is that it focuses on the parent and his willingness to care for the child and not on the child and the perceived benefits to the child.

Rock and hard place, I think. Unless the child is in Ontario, there's not much to stop the procedures. Thankfully, the law is very clear that the courts must be involved in any procedure considering sterilization of an incompetent person:

Indeed, when a patient is not legally or factually mentally

competent to make a treatment decision, physicians are not relieved from their duty to

obtain an infonned and enlightened consent and must therefore find a substitute

source of authority empowered by statute or common law to decide on behalf of the

incompetent. p.63

That being said, it could bring G.A. some negative publicity...and more, much needed discussion. And what about the Canadian Charter of Rights and Freedoms?

15.(1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

It might be possible to argue that the Ashley treatment discriminates on the points of age, gender and disability. No parent would choose such an option for a "normal" child, and no child could willingly choose such a "treatment" for any reason. That would take some hot-shot lawyer...and some parent with deep pockets indeed!

Anyway...there's the VERY ROUGH look at it from a legal angle. Not really encouraging is it? It's here because the hospital danced around the initial legal problem and there isn't really anyone out there to make them accountable for what they did...like a hefty fine and some really, really bad publicity.

Even if the courts managed to make G.A. illegal, wealthy parents could go to the U.S. (or elsewhere) to have it done, I suppose. In the end, we must continue to educate people about disability, about the value of all human beings. We must continue to work toward a more accepting world. In the end, we need to support parents to care for their challenged kids at home and then provide decent living environments outside of the home. That way, few or no parents will choose this option...that's where it has to start...with the parents.

Ashley Treatment...Alive and Well...Sadly

2010-02-01T12:18:00.000-05:00

I am very sad to report that a recent update on Ashley's parents blog indicates that "about a dozen parents from around the world" have been "successful" at having the "treatment" provided for their children (my bet is that they are all female, since the protocols have already been set up for girls...) and that a few hospital ethics commitees found no ethical problems with the procedures.

I am sorry to hear that this is something to celebrate...that it is perceived by Ashley's parents that children are "benefiting" from their example. Unfortunately, it does not come as a surprise that hospital "ethics" committees have no problems with this either...doctors have far different views about disability than disabled people do...and because of society's misguided belief that doctors are the "experts" on all things medical and that it is just plain vanity to question them and their perspectives, the door is now wide open for all sorts of abuses and questionable practices to emerge (see here for details).

Here is a slippery slope in the making, ladies and gentlemen. If you do not believe me, then I will provide you with the very sort of problems that will soon arise from this abominable violation of human rights, right off of the parents' blog. Please read the following carefully, taken from the site:

A quote from thousands of private emails that were sent to PillowAngel@hotmail.com

Received on Monday July 6th 2009

"I want to thank you for pioneering this treatment to aid all the pillow angels out there in the world today. As a pediatric nurse practitioner I cannot express the sheer horror of watching children grow into adults and have their parents try to move them. I take care of a 17 y.o. male with bilateral femoral and tibia fractures (large bones in both legs) from turning him in bed. He weighs close to 200 lbs. Surgery to repair is not an option as he would never come off the ventilator. I have another patient who is non-verbal with severe fetal alcohol syndrome. When her menses come she screams, will not let you put pads on her and throws the discharge at caregivers. She cannot have Depo because of bone loss risks and we have been unable to stabilize her cycle with the pill. I think if those people who are appalled by the treatment would come and see the children in institutions, developing sores because they are so hard to turn, listen to the parents talk who had to put their children in a institution because they could not care for them at home, and would see the bedridden children/adults who are raped and then die during childbirth, the argument would cease. Thank you for publicizing your treatment. I am hopeful that someday we may offer more pillow angels this same gift and allow them to stay at home with the people that love them."

Hopefully you will have noticed some details in this letter. First off..."the horror" of parents trying to move adult children. HORROR. Does that strike you as a bit, ummm, severe as a view of a parent moving an adult child? Dream Mom does it many times a day and I have never heard her describe it as a horror...nor does Single Dad, even with his back out...It's hard work indeed. That's what lifts were invented for, by the way. This is small potatoes, though, in the big picture.

The letter then describes an individual who weighs "almost" 200 lbs (how much, exactly? You see, 20-30lbs here or there, who cares about accuracy, if it makes for a good story) who is difficult to move in bed...again...is this woman alone? If so, why? We have rules here in Ontario that say a single caregiver cannot lift an individual over 40lbs...after that, one must use a lift, or, for bed moves, a second person. There are also techniques to move large bodies. I know all about them. One you learn in CPR training...other moves involve the proper use of underpads on the beds, that slide. You pull the pad toward you (they even have handles on them) and then you roll the individual over using the pad. Again, it's not easy work, but if it's your JOB, then you learn how to do it, now, don't you? Secondly, there is no further mention of this person's physical/mental status...there is only reference to weight. Being disabled and possibly being overweight or just plain big is considered a reason for G.A.?

Next is a description of a female with severe FAS, who is capable enough to know she is menstruating, capable enough to grab her pads and throw them at the caregivers and capable enough to fight them off. I do not wish for one minute to dismiss the very real and frustrating challenges that come with caring for individuals who have severe behavioural disabilities. I think there's a special place in heaven for people and parents who do this...but...that woman is no Ashley, now is she? Remember, the Ashley procedures are supposedly meant only for those deemed "severely disabled" by the doctors...no "hope" of cognitive development, no ability to use willfull actions (walking, hands and arms, head movements), tube fed. Does that describe this woman with FAS?

Before I move on, look what's going on here...remember, this is on Ashley's parents site as a justification for the "treatment"....this is not picked up randomly from the blogosphere. THEY put it there. Neither of the individuals described here have Ashley's disabilities, yet here is a healthcare "professional" (an expert, like a doctor, in these matters of ethics) insinuating that G.A. would have been appropriate for these individuals. Suddenly, the strict and very detailed criteria for G.A. candidacy have slipped away. Wiped away by someone in the medical field and by Ashley's parents themselves.

We hope that by now it is clear that the Ashley Treatment is about improving Ashley’s quality of life and not about convenience to her caregivers..

Though it may be true that Ashley's parents had HER best interests in mind, does this letter from a healthcare "professional" give you the impression that the interest is strictly for the clients....or that the caregivers are having a hard time?

Ahhh...that slippery, slippery slope....

Indeed, when you read the rest of the email, it is about the appaling conditions in the institutions where this person lives. Is G.A. the answer to this unacceptable fate for the severely disabled (or the not-so-severely disabled as well, apparently)? What leap of logic makes anyone think that disabled people of a smaller stature would in any way receive better treatment in institutions of this nature?

Furthermore, we strongly believe that the comfort and quality of life benefits of the Ashley Treatment are even more relevant if Pillow Angels end up in institutions, which was indicated to us in emails from many care givers.

Would it be correct to say, then, that individuals who are small who are living in institutions are better cared for than individuals who are NOT small? If there isn't enough staff to care for, feed, turn, bathe, dress and protect fully grown adults, why would there be enough staff to care for smaller adults? What magic equation made that happen here?

The Ashley "treatment" is now being put forth as an answer to unacceptable living environments for the disabled. Wow! So simple. I can almost promise you it will happen. Then we will have institutions full of poorly cared for "Ashleys".

If you did not believe in slippery slopes arguments before, I hope you see just what happens to these sorts of questionable "treatments" once they move out into the public domain and become mainstream. This is dangerous in the extreme people...and I pulled it right off the parents' own blog.

Ashley...Ongoing...

2010-02-01T12:17:00.000-05:00

OK...so I am continuing from the last post in working through various ideas with regards to the Ashley "treatment". I am addressing the idea of the "infant mind" of Ashley...her perpetual babyhood...and how the concept pervades the site the parents put up. As a justification for the procedures she endured, it appears weak...the adult body is not the enemy it is made out to be, the concept of a static brain is scientifically unsound, the concept of "mental age" largely an inaccurate way of describing brain function and ability.

Next I am going to look at something that is a bit more on the psychological side...and you will notice I will be waxing somewhat philosophical at some point...since I don't actually ski (yes, some Canadians can't ski), I have to learn how to wax something (and don't go all rude on me folks...I'm already there...think flooring...!)

Erika wrote to me and mentioned this particular angle...that it is easier to "embrace the role" of being a caregiver to a disabled child than that of a disabled teen or adult. I can see that this would be true in many ways. The care of an infant matches the care of a severely disabled individual. Thinking about changing the diapers of a fully grown adult is not particularly pleasant. It's easier to conceive of doing that very personal sort of care on someone who is smaller and more childlike. Hence, Ashley "the Pillow Angel" provides a conceptual model that parents can accept more readily than Ashley, the grown woman who menstruates and has bowel movements, and sweats, etc.

Interestingly enough, I am in contact mostly with parents who have teenagers...in diapers and all the rest...with severe disabilities of various sorts. None of them would consider attenuating the growth of their child in retrospect. Isn't that interesting? Here we are in the thick of it and still we wouldn't go back and change anything. I think this ties in with my next point...here comes the waxing...

The growing up process for normal kids is also a growing up process for parents. We learn to let go as much as our kids do. As a child grows, we learn to see and respect them as individuals with individual lives. They aren't "ours"...they belong to themselves and we, as good parents, can only provide guidance along with the physical care. When a child is born with severe disabilities, the process is delayed considerably since the care of the child is similar from babyhood through adulthood. That separation that occurs is harder to define...or to create...or to understand as in "stand under".

But it can...and does...happen. I can tell you from personal experience that it has only been within the last year and a half since my child's switch into the land of disability that I have come to see her as an individual with a life of her own....one for which I am not entirely responsible. It was a like a bolt of lightning, such was its impact on my thinking. Though her physical care and stimulation are 100% my responsibility, her inner life, her reason for being is not. She is here and that defines and proves her individuality and her right to life.

This awareness on my part has come with her maturation. Had she not grown up, I would not have come to this conclusion. I would have fallen into the trap of viewing her as a perpetual infant and all that entails...all the control, all the envelopment, all the imposition of me onto her. The startling result of this awareness is not what you'd expect: I am now more respectful of her, more aware of her, more caring and care-ful because I am serving another person, not an extension of myself, or a baby obliviously dependent upon me. My role has transformed...or better yet...has been broadened to include the respect for her individuality. As such, the decisions that I must make for her that she cannot make for herself are done from a much different perspective. I am keenly aware of her separateness and I must take this into account. When I think of the procedures to attenuate growth, it is my sense that these represent the most invasive assaults on the personhood of a human being...a violation of trust. Parents are entrusted with a child's life..life "in trust"...trusted to protect the child and allowing a child to grow up with full bodily integrity is part and parcel of that duty to protect.

To claim that surgeries occur all the time and that one's "bodily integrity" is affected with every sort of medical intervention is just blowing smoke. The fact of the matter is, attenuation of growth affects healthy tissue...to remove a diseased part of the body is an appropriate action to save a life...to fiddle with perfectly healthy organs and bodily functions is another thing altogether. It sets a dangerous precedent...and I will discuss that in the next post.

Working Through Issues....

2010-02-01T12:15:00.000-05:00

The next few posts will be dealing once again with the Ashley treatment or growth attenuation. The very particular reasons for me doing this will likely (hopefully) become apparent within the next few months. I find that blogging has assisted me tremendously in examining and re-examining a number of issues relating to disability. It helps me clarify myself to myself and the comments that sometimes ensue are also extremely helpful with this process. So you will be reading "rough drafts" of my thought processes. My goal will be to ground myself thoroughly and intelligently in issues pertaining to the procedures Ashley endured and how these procedures impact the world outside of Ashley's particular life.

I welcome comments and emails pertaining to these issues. I will tell you right off that no one will ever convince me that growth attenuation is a viable treatment for anyone at any time. Don't bother trying to change my mind. I am always open to insights and ideas, however, and will accept anything that is intelligently written (as opposed to accusatory or angry). I will also remind everyone that my daughter requires the sort of care that Ashley requires: full on, 24/7 care. She is not even as stable as Ashley is...she has never been "a pillow angel"...never having stayed passively on any surface, thank you very much.

I have been forcing myself to read, in its entirety, the blog Ashley's parents set up some years ago. This has been an exercise in self-control that I can barely express in words. The whole thing is so intensely appalling to me, that I find it difficult to read material that is so happily and enthusiastically in support of the "treatment". It would be like forcing you to look at child porn in order to find and help the children in the photos...that's how bad it is for me.

This is not to say that I think the parents are evil or in the class of child pornographers so don't anyone get their knickers in a knot. It is clear that the parents love their child (possibly the incessant expressions of their love for her is a bit cloying) and it is obvious by the photos that Ashley is well cared for...she really is a gorgeous child. Absolutely beautiful. It will not be my goal to demonize the parents or their decision. They insist it was all done to benefit Ashley...so be it. What is done is done and cannot be changed. What must be addressed at this point is how to keep this from happening again...or keep it to an absolute minimum. I am, after all, a realist and there will always be circumstances where things happen that shouldn't but in the end do...because of time, money and determination.

The web site set up to defend the so called "treatment" is, in all honesty, the most boring read I have ever come across. That, for me, was a hurdle in itself. It has rarely been updated, now that the publicity has died down. Most of it consists of supportive emails and T.V. interviews, articles and such. It is unimpressive but it lays the groundwork for everything that will follow in the future, so it must be read and analyzed.

Right off the bat, what stands out in my mind about the site is the frequent reference to Ashley's supposed mental age and her believed to be static status as a "baby" or as an "infant". It seems this is almost the crux of the matter...it defines the procedures in many ways. A baby's mind should equal a baby's body. The removal of all things indicating growth and maturation is, therefore, justifiable. Everything that indicates a mature body is deemed uncomfortable...breasts, menses, size. If you can't "understand" your status as an adult, you can't handle what adulthood brings, therefore you must eliminate adulthood.

There are three things here that come to my mind. First, I find the arguments put forth about the terrible discomforts that Ashley would endure from having a fully grown woman's body to be overblown...they are immature, speculative and full of stereotypes. For instance, if a "restrictive bra" is a problem...get a better bra! Wear a tight camisole! Buy straps for the chair that accommodate a woman's breasts...etc. I don't want to detail any of this here. A good site to check out is this one, for more deconstruction of these ideas. They do not stand up well as reasons for making these procedures available to others.

The fact of the matter is that children with severe limitations are going to experience discomfort because they cannot scratch an itch, take a hair our their mouth, deal with a stomach cramp...it is one of the awful realities of severe disability. You could argue that removing what discomforts you can, then, has some value. No. Why? Because it just goes on and on, people. Legs cramp, teeth rot (let me tell you, based on their logic, I am surprised they did not have her teeth removed...they are a huge source of difficulty and discomfort for a tube fed child), contractures develop, clothes are lumpy, diapers scratchy...it's just endless. At what point does one stop removing things that are uncomfortable? To make someone comfortable, you create an environment and provide care that provides as much comfort as is possible. To resort to extreme surgical procedures to avoid discomfort....before the fact, mind you...is ridiculous. Adulthood...maturation...is not the enemy.

Secondly...the belief that a brain is static in its development is patently false. Science has proven, beyond the shadow of a doubt, that a brain is a plastic environment, that we understand very little of its power and function, and that it is possible to rehabilitate a supposedly dead brain back into function. I need only refer you this one book as proof: "The Brain That Changes Itself" by Norman Doidge, M.D. And I quote:

This book is about the revolutionary discovery that the human brain can change itself, as told through the stories of the scientists, doctors, and patients who have together brought about these astonishing transformations. Without operations or medications, they have made use of the brain's hitherto unknown ability to change. (p. xvii)

I don't expect that parents of children with severe disabilities must wait for miracles in science that may or may not help their children. I expect parents to understand, though, that their children's brains are not to be understood as static in their development. Though the development may not be linear in progression or demonstrably typical, there is development of some sort via the sheer experience of life. The more you provide stimulation of any sort, the more the brain creates, in whatever way, fodder for its growth and viability. This is irrefutable fact. It is also fact that those who make decisions about ability based on brain scans are often, if not always, wrong. I can tell you that my daughter's frontal lobe is nothing more than toothpaste yet she can read, write, talk, learn new things, sing in tune, laugh at jokes...on and on and on. Not bad for a child whose prognosis, from the specialists was death...or a vegetative state.

My daughter is also a perfect example of how careful one must be in discussing "mental age". It is appropriate to use the expression in only the most general sense in describing an individual with cognitive challenges. My daughter's thought processes are all over the place. She can't tell you what she had for breakfast...but she will say "f**k" when she sees Daddy has a frown on his face. She can read long, new words, but can't answer a question immediately after having been given an answer for it. She still likes to watch "Zaboomafoo", but gets some jokes on "Friends"...and she is totally in love with our chiropractor. Absolutely loves boys. She is 15 after all...in some ways.

To summarize, it is not correct...it is not science to attenuate the growth of a child because of their perceived cognitive ability and the assumed inability to "deal with" the maturation of their bodies. Cognition is not static, nor is it measurable in a non-verbal child with severe multiple challenges.

Next post will address the third idea I have.

The Dignified Corpse

2010-02-01T12:13:00.000-05:00

Since my daughter has been doing so much better, I have had the time to pursue my more "political/academic" interests with a very particular end in mind. I've read as much online about Singer (primarily because he represents one viewpoint) as I can find...and there is quite a bit of his own material out there so that I can quote him directly and not suffer the oft repeated criticism that Singer's writings are "misunderstood" and "taken out of context".

The following represents some thoughts of mine...and once again, there's nothing genius about it...I am quite simply struck by some of the things I have come across of late.

What I have been trying to come to terms with recently is the issue of cognition..or more precisely, to use Singer's terminology, "self-awareness"...and the value of life...specifically, why is it that the minute someone's brain function is compromised, it's open season on that person's life? What is it about our society that we value thinking so highly that we assume then that it is OK to deny someone his or her human rights because he/she "doesn't really understand" what is going on around them? Why is it that a man or a woman in a wheelchair is treated like crap on the street until someone discovers s/he has a PhD? People fawn over Stephen Hawking...would they do so if he weren't a genius? Among certain "neurodiversity" advocates, there is a great deal of time spent on "proving" all geniuses of the distant past were actually autistic. Why does that matter?

I'll admit to having fallen for this line of thinking myself. One of my biggest objections to the Ashley Treatment, up until now, was that there was no way that they could really tell what her cognitive ability actually was or could become. CT scans are not reliable indicators of thinking ability, as my own daughter's scans very clearly demonstrate. How horrible would it be for her to experience all of these surgeries and assaults on her bodily integrity if she is fully cognizant of what is happening to her?

Again...why should that matter?

Like it or not, Singer merely puts this pre-existing societal prejudice into clear and extreme focus:

In Chapter 4 we saw that the fact that a being is a human being, in the sense of a member of the species Homo sapiens, is not relevant to the wrongness of killing it; it is, rather, characteristics like rationality, autonomy, and self-consciousness that make a difference. Infants lack these characteristics. Killing them, therefore, cannot be equated with killing normal human beings, or any other self-conscious beings. This conclusion is not limited to infants who, because of irreversible intellectual disabilities, will never be rational, self-conscious beings...No infant - disabled or not - has as strong a claim to life as beings capable of seeing themselves as distinct entities, existing over time. (bold italics mine)

It's shocking to read...particularly since most people think Singer's views on infanticide were specific to those with disabilities. Wrongo. Your "normal" healthy baby is up for grabs too, with this line of thinking. As I mentioned above, however, there is a strong tendency to value humans...and animals for that matter...based on their brain power and everything that entails.

Some might argue that this is a culturally influenced bias, but since it crosses cultural barriers, I think (and I am purely speculating) that it might have to do with some very basic (and long ago unnecessary) instinct for survival. The smartest...not necessarily the strongest...will survive and make a choice mate for reproduction and continuance of the species.

Reams of paper has been spent attempting to define personhood and it's relationship to cognition and "self-awareness", not only in academic circles but in legal ones. Arguably, discussion in the legal arena has a much more powerful influence on everyday life, because this is where people turn to assist them in making decisions regarding the appropriate treatment of human beings that they then can carry out without fear of reprisal. In any case, it is here that I found an interesting little anomaly.

When dealing specifically with cognitively challenged individuals, there is always a reference to the concept of "dignity". As a matter of fact, in the Ashley case, it was specifically pointed out by one doctor that she possessed no such thing:

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity."

I have read similar perspectives in legal documents in dealing with people with severe disabilities and those in comas. The end result is the same: you can do things to cognitively challenged people that you cannot do to "normal" people because they won't really know what is going on in the first place.

Interestingly enough, in both Canada and the U.S. there are laws pertaining to the treatment of a corpse and there is such a thing as being charged with an offense when committing "an indignity to a corpse" or "abuse of corpse". Indignities include, but are not limited to, having sex with a corpse, mutilating a corpse, not burying a corpse.

Isn't it interesting that it is possible for one to perform an indignity to a corpse but not to a cognitively challenged child (or adult)? At what point does the dead body acquire more dignity than a live person? Hmmm.

Finally, is the rape of a comatose, catatonic or severely cognitively challenged individual (and don't be so naive as to think these things have not occurred), less abominable because the victims don't know what happened? Said rapist can still be charged with rape and suffer imprisonment. They aren't let off on the basis that the one raped was unaware of it. Ashley's parents argued that removal of her breasts were to avoid her being sexualized..but what difference would it make if she is so completely lacking any sense of dignity?

The point (of this long, rambly post) is, dignity isn't any more of something that the disabled person has to prove himself aware of or worthy of than the quality of life issues I discussed in a previous post. We either endow humans with dignity or we don't...we either choose to value humans or we don't. We can't start making all sorts of ridiculous distinctions based on cognitive ability.

Otherwise, we would all be better off as corpses.

She just goes on and on...

2010-02-01T12:12:00.000-05:00

The most dangerous little tidbit in this rationalization for growth attenuation by Ashley's father is this: No amount of state funding or resources would replace these direct benefits. What is being said, in effect, is that helping families with kids with severe disabilities via supports for daily living is a lesser choice than G.A.

It's pretty easy to predict a number of things that can and will likely follow if G.A. becomes a legitimate "treatment option".

* since it is likely that the full cost of G.A. is cheaper in the long run than daily living supports for fully grown severely disabled individuals, no state (or province, or whatever government) will seriously invest in the care and assistance of the severely disabled.
* since no government will seriously invest in supports for the severely disabled, what is likely to happen with supports for any disabled population? (Think along the lines of "very little").
* if proper supports are not in place, parents who might have otherwise considered leaving their child intact will opt for G.A.
* since attenuated individuals are perceived to be easier to care for, there will even be greater expectations of parents to care for these individuals for their (the parents') entire lifetime. There will, therefore, be no inducement to provide more and higher quality housing options for the severely disabled.
* can you see that governments and insurance companies might consider paying for or subsidizing G.A. because it is perceived to be cheaper in the long run?
* young severely disabled children who are given up to the state for care (abandoned...and I use that term with great delicacy), will likely be first in line for G.A. because it will be perceived as cheaper and easier to care for them in the long term in institutionalized settings.
* without proper supports, more children with severe disabilities will be abandoned to the state.
* if G.A. becomes considered as a legitimate treatment, it will be "offered" to parents of severely disabled children before rigorous testing and assessment of these children's cognitive abilities are ascertained...or allowed to develop. This would save alot of money on the develoment and procurement of assitve communication devices for this population. These devices fall under the category of "assisted living"...and proper supports.

Why I have been yammering away at this of late is because the whole G.A. thing is at a turning point. What bothers me is that there is alot going on in the background to sneak this past an ususpecting public. Had Ashley's parents made this decision for their child and then SHUT UP ABOUT IT, I would be hard pressed to criticize. We all have to make some awful decisions when it comes to our kids. What is patently wrong here, is that there is an agenda to make this a viable treatment option for all parents of kids with severe disabilities. All of you know just how much pressure the doctors can apply when they decide a treatment is "best" for your child. How many kids...more specifically GIRLS...are going to be mutilated in this way before someone says something?

My blog is of little consequence in the grand scheme of things. I consider it very important, however, to influence people as much as I can in this regard. My little world map shows that people from around the globe read my blog from time to time. If one family opts out of G.A. because of these posts, then I will have succeeded. If more and more people get off the fence and stand in opposition to this, whether or not they have a child with disabilities, the better off all of our kids are. The world will be that much safer for the disabled.