Thursday, December 9, 2010

Growth Attenuation, Hastings Center Report and Media Misrepresentation

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.

Saturday, November 20, 2010

The Best for Last

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

Friday, November 19, 2010

Infamous quotes by Norman Fost

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.)

Thursday, November 18, 2010

Will technology help us avoid more Ashley X's?

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.

Wednesday, November 17, 2010

Another Hasting article addressed

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.

Friday, November 12, 2010

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.

Thursday, November 11, 2010

Ashley Treatment in the Hastings Center Report

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.

Wednesday, May 12, 2010

Predicting Ashley

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 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.

Monday, April 26, 2010

Bill Peace's Conference Presentation

The conference is alive and'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 (

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.

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

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 no one can accuse me of not knowing “what it’s like” to care for a child with severe 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” 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 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 9th, 2007, #3, ) (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,

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,

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.