I remember the hate mail like it was just yesterday. Like hundreds, perhaps thousands of other bloggers in the dis-a-sphere we at POTB protested the treatment of “Ashley” the “Pillow Angel” in no uncertain terms. (See “Growth Attenuation: Say it Ain’t So”) Today’s post at Inclusion Daily Express revisiting the findings of the Washington Protection and Advocacy System, findings which underscore precisely what disability rights advocates were saying all along, is a stark reminder of how steep the way can still be for people with disabilities.
S.K.
“Ashley Treatment” Was Illegal, Watchdog Group Says
By Dave Reynolds, Inclusion Daily Express
May 9, 2007
SEATTLE, WASHINGTON–The civil rights of a 6-year-old girl with an intellectual disability were violated when doctors failed to get a court order before performing a hysterectomy on her as part of the “Ashley Treatment”, a disability rights watchdog group announced Tuesday.
In its 38-page report, the Washington Protection and Advocacy System concluded that an ethics committee at Children’s Hospital and Regional Medical Center in Seattle followed bad advice from the attorney representing the parents of “Ashley X”. That attorney said a court did not need to weigh in on the sterilization procedure because the surgery was not intended to keep her from getting pregnant, but was a byproduct of a set of treatments — along with massive doses of estrogen and surgical removal of her breast buds — designed to keep the girl physically small and avoid puberty.
Under federal and Washington state law, a child or adult with a developmental disability cannot be surgically sterilized at the parents’ request until a court has approved the procedure and after the child’s interests have been ‘zealously’ represented by an uninvolved third party, usually a court-appointed guardian ad litem.
By side-stepping a court’s review, Ashley’s 14th Amendment rights to due process were violated, WPAS concluded, along with state sterilization laws. Other anti-discrimination laws might also have been violated because the treatment would not even have been requested if Ashley did not have a disability. WPAS attorneys reasoned that the hormone treatments and mastectomy might have required a court review because they were very intrusive and could not have been reversed.
News of the “growth attenuation” treatment, which was performed on Ashley in 2004, was made public last October in the journal Archives of Pediatrics and Adolescent Medicine. It did not receive much attention until Ashley’s parents published their own website on January 2 of this year, to defend the treatment and to promote the procedure for parents of other “Pillow Children” — those with severe disabilities.
Many disability groups and individual advocates issued public statements expressing outrage, disgust and fear over the treatment, the medical ethics board’s refusal to stop the treatment, and the public’s general acceptance of the idea of that altering the size of a child with disabilities would be good for the child, the family, and society at large. Some called for federal and state investigations to determine whether the treatment was ethical and legal. The WPAS investigation started as a result of complaints from disability rights advocates.
The WPAS report focused on the legal aspects of the Ashley Treatment, but noted that a further ethical debate needs to take place over the rights of people with disabilities, along with more emphasis on supports for people with disabilities, their parents and families.
Curt Decker, executive director of the National Disability Rights Network, of which WPAS is a member, said: “We believe this is not acceptable treatment for a child with disabilities, despite the rationalization of the family,”
While WPAS blamed a series of “systemic” failures, the hospital called it a “communication breakdown”.
In response to the report, Children’s Hospital admitted that the surgery was performed illegally, and agreed to a number of steps to make sure that a child’s due process rights will be respected in the future, including placing a disability rights advocate on its ethics committee.
Douglas Diekema, the Seattle pediatrician that brought Ashley’s case to the ethics committee, told reporters that what is legal may not be the same as what is ethical.
Ashley’s parents defended the treatment performed on their daughter, and added that requiring families in their situation to go through a court review would place “an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s.”
Related:
“Investigative Report Regarding the ‘Ashley Treatment'” (Washington Protection and Advocacy)
http://www.inclusiondaily.com/news/07/red/0509a.htm
“Statement from Children’s Hospital Medical Director, Dr. David Fisher” (Children’s Hospital and Regional Medical Center)
http://www.inclusiondaily.com/news/07/red/0509b.htm
The Ashley Treatment Weblog
http://ashleytreatment.spaces.live.com/
A Disability Community’s Response to Ashley’s Treatment
http://www.katrinadisability.info/ashley.html
A Statement of Solidarity for the Dignity of People With Disabilities: A Reaction to the “Ashley Treatment”
http://pub6.bravenet.com/guestbook/501900445
“Disability Advocates Respond To “Ashley Treatment” Designed To Keep Girl Small” (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/families/ashleyx.htm
Planet of the Blind 
FYI, as recently as April 28th, at this conference (http://www.law.umaryland.edu/faculty/conferences/detail.html?conf=92) the Ashley X “treatment” was discussed. Both Bill Peace’s presentation and mine can be found here (http://saynoga.blogspot.com/2010/04/bill-peaces-conference-presentation.html) and here (http://saynoga.blogspot.com/2010/04/conference-presentation.html). Bill reported to me that the Ashley segment was packed and that the large majority of participants decried the “treatment”. It was surmised that proper societal supports would go a long way in keeping parents from choosing such a horrific option for their severely disabled children.
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