For Their Own Good?
Advocates decry Ashley Treatment
by Dave Reynolds
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
