Monday, February 8, 2010

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) 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.

Friday, February 5, 2010

Longitudinal Wisdom

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 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)

Wednesday, February 3, 2010

Profoundly Disabled Adults are "Freaks": Dr. Fost

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!

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

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

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

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

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

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

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

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

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

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

Monday, February 1, 2010

Passing Through the Eye of the Needle...

Jesus 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 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.

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

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

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 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 "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... 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 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 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 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 "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 remove a diseased part of the body is an appropriate action to save a 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....

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 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 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 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'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 ridiculous. 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 some ways.

To summarize, it is not 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

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.