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Monday, October 26, 2009

The Law and the Ashley Treatment

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 said...

My daughter is a lot like Ashley, totally non-communicative (that being vital here), non-mobile, grossly delayed, etc. Yet, as a single parent and she is now a fully grown woman, we have no issues caring for her. Ashley's father's own perception and ideas about his daughter are so distorted, argued here, just go to prove how bizarre this is. What has happened to the hospital that illegally performed the surgery? What are the ramifications (I know one of the doctors committed suicide for unclear reasons). Who is actually standing up for Ashley and her rights? I am not sure that in the long run, anyone really cares (in the legal or medical community).

william Peace said...

The: The parents arguments for the so-called Ashley Treatment are not justified in my estimation. A social and practical solution exists for each and every issue they raise. Perhaps at some level an extreme if not bizarre remedy as you put it could be justified given the fact parents are given wide latitude when making health care decisions for their children. But Ashley's parents want to do much more than "care" for their daughter and created buzz words such as the Ashley Treatment and Pillow Angel. This sort of promotion is wrong and in writing about growth attenuation as opposed to the Ashley Treatment doctors are distancing themselves from scrutiny.
As for what happened to the hospital the answer is not much. The WPAS and the hospital released a report about what took place and agreed to put in more safe guards in place to protect children like Ashley. To me, the report was a white wash at best. Safe guards already exist and in Ashley case did not help. Why should more safe guards work now? Sadly doctors and ethicists utterly failed to protect Ashley's human rights. Worse yet, I suspect you are correct--no one cares about the human rights of those with profound cognitive disabilities in the medical and legal community. If this was the case Ashley would not have been illegally sterilized in the first place.
The suicide of one of the doctors involved only makes the Ashley case more depressing than it already is.

Terri said...

I think you are right. The lack of understanding of disability rights as civil rights--and of people with disabilities as people (at all, let alone first) is endemic--or is that epidemic--in our society. And the lack of solidarity among those with disabilities allows society's view to go mostly un-challenged.

When I say my daughter has a disability (she has Down syndrome) many folks with disabilities fall all over themselves to make sure I know that they have a PHYSICAL disability...

The cool folks--and I know many of them--don't do this, but I think they are in the minority of the minority. When we don't recognize common humanity among ourselves it is harder to make the case to the world, I think.

Keep up your excellent writing--I never fail to learn from you.

william Peace said...

Terri, Real equality begins and ends with the understanding disability rights are civil rights. An effective way to prevent disability rights from sweeping the nation is to divide people within this minority group. In part this is due to a medical model of disability, the premise upon which it is based is the belief that physical or cognitive deficits are the sole problem. When you combine this with the need to advocate for particular needs, wheelchair access in my case, one enters the larger cultural discourse with two strikes against you. Only when people with a disability all band together will real change take place. Thanks for your kind words.