This week, more disability rights advocates weighed in on a controversial set of procedures that a Seattle couple ordered for their daughter, who has physical and intellectual disabilities, in an effort to keep her “child size.”
The “growth attenuation” treatment, which the anonymous parents called the “Ashley Treatment” on their web-log, involved using massive dosages of the hormone estrogen to stunt the growth of the now 9-year-old girl, along with surgery to remove her uterus and her breast tissue to keep her from starting puberty.
The procedures took place over a two-and-a-half year period at Children’s Hospital and Regional Medical Center in Seattle, and were overseen by a medical ethics panel through the University of Washington.
The treatment was revealed last October in the journal Archives of Pediatrics and Adolescent Medicine, but did not receive much attention until the parents published their own Web site, on January 2, 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 have issued public statements expressing outrage, disgust and fear over the parents’ treatment of Ashley, 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 would be good for the child, the family and society at large.
Some have called for federal and state investigations to determine whether the treatment was ethical and legal.
Most also called for increased funding for community-based and in-home supports for people with disabilities and their families, in light of the fact that Ashley’s parents said they worried they would not be able to care for her at home if she grew up.
On Thursday, January 11th, a group of about 25 activists, many in wheelchairs, gathered at the national headquarters of the American Medical Association in Chicago. The activists, organized by the Feminist Response in Disability Activism, and including members of the grassroots disability rights groups ADAPT and Not Dead Yet, were there to demand that the physicians association condemn the practice. They also called for the AMA to support federal legislation that would increase funding for community-based services.
Here are excerpts from some of the statements by disability groups:
“This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her care-givers,” said Stephen Drake of Not Dead Yet.
In a brief press statement, Self Advocates Becoming Empowered expressed anger, sadness and outrage over what members considered a violation of Ashley’s human and civil rights: “SABE feels if Ashley did not have a disability this never would have happened. Just because someone has a disability does not mean they should be denied the basic human right to grow and mature as everyone else.”
The Board of Directors of the American Association on Intellectual and Developmental Disabilities, formerly the American Association on Mental Retardation, wrote: “We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum.”
“It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for,” said Steven Taylor, director of Syracuse University’s Center on Human Policy.
In a written statement, Diane Richler, President of Inclusion International, said: “Just last month we celebrated the adoption of the new United Nations Convention on the Rights of Persons with a Disability . . . Ashley’s situation teaches us that our celebrations were premature.”
In a letter to the editors of the Archives of Pediatrics and Adolescent Medicine, TASH board president Lyle Romer wrote: “This is the denial of a child’s basic right as a human being to be free from the unwarranted and unnecessary manipulation of their basic biological functions merely to satisfy the needs of a third party …Children with severe developmental disabilities are, first and foremost, human beings. The manipulation of a child’s physical development relegates those receiving such treatment to a less-than-human category.”
The Disability Rights Education and Defense Fund wrote: “‘Benevolence’ and ‘good intentions’ have often had disastrous consequences for the disability community. Throughout history, ‘for their own good’ has motivated and justified discrimination against us….After decades of struggle to enshrine the human rights of people with disabilities in law and policy and to challenge the overwhelming prejudice, negative attitudes and misperceptions that are widely held about people with intellectual disabilities, this sad and puzzling episode must not mark a turning point for those hard-won gains.”
Dave Reynolds is the editor of Inclusion Daily Express. Reprinted here with permission from Inclusion Daily Express, the international disability rights news service at www.InclusionDaily.com