Monday, April 26, 2010

Bill Peace's Conference Presentation

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



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


Below is a copy of what I will be presenting:

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

Disability, Health Care & Ethics—What Really Matters

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

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

Lessons From the Ashley X Case

William J. Peace, PhD

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

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

Conference Presentation

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


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

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

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

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

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

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

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

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

I would have said, “Don’t do it.”

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

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

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

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

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

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

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

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

Consider this, from Ashley’s parents’ site:

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

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

So I say it again...”Don’t do it.”

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

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

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

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

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


I also agree with the father’s observation that having her size be more appropriate to ‘her developmental level will make her less of a “freak” (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring...It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. (emphases mine) Scientific American: Christopher Mims, “The Pillow Angel Case: Three Bioethicists Weigh In”, Norman Fost @ 11:08 AM EST, http://www.scientificamerican.com/article.cfm?id=the-pillow-angel-case--th&page=2

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

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

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

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

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

Thursday, April 1, 2010

The Conference

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

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


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