The Ashley Treatment is back in the news. On May 8 major news outlets reported that the Seattle Children’s Hospital and the doctors who performed surgery as part of the “Ashley Treatment” broke Washington State Law. The hospital acknowledged that they had violated the law when Ashley was sterilized (minors cannot be sterilized without a court order in Washington). The hospital medical director, David Fisher, stated “we deeply regret that a court order was not obtained and that an independent third party was not sought to represent Ashley. We take full responsibility for the miscommunication between the ethics committee and the treating physicians. We have introduced new safeguards so that procedures requiring a court order will have one obtained before they begin”.
This statement falls woefully short of addressing the profound implications of the Ashley Treatment I wrote about last January . While the hospital may have resolved its legal and procedural problems it has failed to understand or consider why people with disabilities were outraged. To me, the hospital statement amounts to nothing more than political or legal spin and demonstrates that the cultural divide between those with a disability and those without is as wide and deep as the Grand Canyon. How else can one understand the hubris of all those involved? The parents still advocate the Ashley Treatment, the hospital continues to evaluate children for this radically invasive “treatment” and no one questions whether the treatment itself is right or wrong.
Based on the outcry of many people with disabilities, the Washington Protection and Advocacy System (WPAS), a private group vested with federal investigative authority for people with disabilities initiated an investigation into the use of the Ashley Treatment. With the cooperation of the hospital, the WPAS released a full report of their findings (the report is available on line: wpas-rights.org). Ashley’s parents who have remained anonymous yet maintain a very public blog about their daughter praise and question the findings of the WPAS. In a May 8 update of their blog Ashley’s parents “support the vigilance of WPAS in their efforts to protect vulnerable members of our society”. But in their opinion the laws designed to protect the rights of disabled people to procreate did not apply to Ashley. They wrote that their daughter’s documented developmental state and prognosis precluded voluntary procreation and that sterilization was not the intent of the Ashley Treatment but a byproduct of it. The parents conclude that the law regarding sterilization is too broad and requiring a court order for “all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s”. When I read this statement I was stunned. Are Ashley’s parents unaware that through much of the 20th century in America disabled people were forcibly sterilized? Have they never heard of the Eugenics movement? *
The law in Washington State is concise: a court order is required before a minor can be sterilized. Ashley may have profound mental and physical disabilities but she is human. The actions of Ashley’s parents make me shudder. It also made me think of Joseph Merrick and the 1980 movie Elephant Man that was loosely based on his life. I remember only one scene from the film: it is when Merrick loudly proclaimed, “I am a human being”. Is our culture aware that disabled people, regardless of their cognitive and physical abilities, have a place in society? Based on what I have experienced and read in published reports about the Ashley Treatment the answer is a thunderous No. What has the mainstream presses reported? The hospital is praised for cooperating with the investigation and publicly admitting they made a mistake. The hospital will even appoint a person with a disability rights perspective to the ethics board. Wow, is this great? I think not. It is entirely inadequate. The hospital, doctors involved in treating Ashley, and the ethics committee that approved the treatment should be condemned for bigotry of the basest sort. Published reports updating the story do not mention the merits of the case nor do they consider why it was acceptable to sterilize Ashley and radically alter her body. Why is Ashley’s humanity never discussed? Why are her civil rights somehow different than those who are not disabled? Why was her right to due process ignored? Why was the fact that Washington is a state that has strict laws regarding the sterilization of minors ignored? Why were her constitutional and common law rights violated? Why were Ashley’s parents “over-burdened”, caring for their daughter?
None of the above questions addresses the fact Ashley will never be the same person physically. This, I assure you, has implications for disabled people and the way they are perceived by society and the medical system. Since January the internet, particularly sites related to disability rights, have been abuzz with commentary. I have printed much of this discussion and the stack of papers on my desk easily exceeds 1,000 pages. All this material can be accessed with a few strokes of the keyboard yet not a single story mentions the multitude of questions raised by disability rights activists. Yes, the hospital cooperated with the WPAS but that has not stopped them from considering other children for the Ashley Treatment. More to the point, what choice did the hospital really have? At a joint news conference the hospital and disability rights activists were praised for cooperating with one another during the WPAS investigation (Ashley’s parents were invited but declined to attend). This is fine but why did no one ask the simple question: why were Ashley’s rights violated in the first place? According to Mark Stroh, executive director of the WPAS “Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval and, in this instance, it did not happen”. I want to know why and so do many other disabled people in this country.
The failure to protect Ashley’s rights highlights the fact that the problems disabled people encounter are not medical but social. Developmentally and physically disabled people are among the most socially isolated in this country. Group homes are routinely met with stiff resistance from neighbors and town governments. Secondary schools perceive disabled students to be financial burdens, taking resources away from “normal” kids. At universities across the country the ADA is routinely ignored (I often teach in a building that does not conform to ADA standards). American society simply does not accept or value crippled people. Why do I use this antiquated word crippled? Aside from the fact it has shock value, cripple refers to a person who cannot walk or use one or more limbs. I cannot walk. That is a fact. Ashley cannot walk and has profound mental limitations. These too are facts. Do these facts preclude us from living a full life? No. What do preclude our ability to live life to its fullest are societal ignorance and prejudice. We, meaning crippled people, cannot ignore past abuses. The history of crippled people is filled with stories of forced sterilization, institutionalization, and abandonment. These actions were taken not because they were good for crippled people. Rather they were in the supposed best interests of society. Given this, I remain alarmed that the primary benefit of the Ashley Treatment and growth attenuation was that it made “caring for the child less burdensome”. According to Ashley’s doctors, Daniel Gunther and Douglas Diekema, “a smaller person is not as difficult to move and transfer from place to place”. This line of reasoning is deeply flawed, as are the conclusions they reached: “growth attenuation in the non-ambulatory child with severe developmental disability seems mutually beneficial to caretakers and patient. There does not appear to be conflict between the interests of the parents and the interests of the child”.
It is obvious that Ashley’s parents and doctors not only infantilized Ashley but failed to acknowledge her rights as a human being. The WPAS findings directly contradict the conclusions of Ashley’s doctors. The WPAS report is a fascinating document in that it is easy to read and blunt. For example, the hospital and doctors cited communication failures in neglecting to get a court order to sterilize Ashley. The WPAS executive summary makes it clear this failure was more than a simple miscommunication or paper work error. The WPAS stated that any individual being considered for the Ashley Treatment “must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individuals best interests”. In turn the WPAS would “act as a watchdog on behalf of people with disabilities”. The WPAS concluded that Ashley’s parents did not have to the legal right to represent their daughter. According to the Washington Supreme Court, parents have limited “authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interests of the child. Thus, the other aspects of the “Ashley Treatment”-surgical breast bud removal and hormone treatments-should also require independent court evaluation and sanction before performed on any person”.
There is no question that Ashley’s doctors and the hospital acted illegally. The hospital has admitted to this and implemented procedures to insure a court order will be sought before other children are sterilized. What the hospital and the WPAS have not done is question the larger implications of this radical medical intervention. What does the Ashley Treatment say about the social perception of all disabled people. When reading the news stories about the Ashley Treatment, all of which were disheartening, I wondered what Robert Murphy, author of the Body Silent would have thought. Murphy’s book, a text I identify as the Magna Carta for crippled people, held that disability was a social malady. I recall reading this book and being stunned: there was nothing “wrong” with me. My disability had little to do with medical issues but rather spoke volumes about society and culture. As such, I think disability is an allegory for life and entropy. Paralysis, or in Ashley’s case mental deficiency, is a metaphor for what Americans fear the most-disorder, loss of control, and eventually death. The result is that society wants to isolate and hide disabled people in socially sanctioned settings. This takes the form of group homes, back entrances, obscure elevators, locked doors, paratransit systems, and a host of other “special” accommodations. Each of these accommodations are designed to do one thing-make the disabled person socially and personally invisible.
Every day disabled people struggle against social invisibility. Stories such as the Ashley Treatment deeply depress me. How could doctors charged with the ethical principle primum non nocere, to “do no harm”, think of such an abomination like the Ashley Treatment”? How could two loving parents want to mutilate their daughter’s body and violate her most basic rights? What is next? Amputate the legs of paralyzed people because they are at risk for skin problems and blood clots? What about Alzheimer’s patients? Should they be permitted to live if they are not sentient? I have rights. Ashley has rights. All crippled people have rights. These rights have been gutted by the Supreme Court who have made a mockery of the Americans with Disability Act. American society has utterly failed to be inclusive to crippled people. No one cares about crippled people aside from the crippled themselves. For example, I have been told many times wheelchair access is of limited use and should be optional. Building ramps, accessible bathrooms, and elevators makes no financial sense because the number of people that need them is severely limited. The argument that the inclusion of crippled people is not “fiscally responsible” and that my rights as a person who uses a wheelchair is somehow different is bigotry. Inclusion is not an option. It is a civil right. I hope some day those rights will be recognized and supported by all people-those than can walk and those that cannot.
Editorial footnote: Allan Chase, in his “The Legacy of Malthus,” says 63,678 people were compulsorily sterilized in America between 1907 and 1964 in the 30 states and one colony with such laws. But there were hundreds of thousands more sterilizations that were nominally voluntary but actually 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.” This rate equals that achieved in Nazi Germany. AC/JSC
William J. Peace is an independent scholar. He is the author of Leslie A. White: Evolution and Revolution in Anthropology. He has contributed articles about disability in the Ragged Edge and scholarly publications such as Disability Studies Quarterly. Next spring CounterPunch Books will be publishing Peace’s new book, The Bad Cripple. He can be reached at firstname.lastname@example.org