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Feminist Response in Disability Activism (FRIDA)
Self-Advocates Becoming Empowered: Statement on "Ashley X" (SABE)
ADAPT Youth Appalled at Parents Surgically Keeping Disabled Daughter
Childlike (ADAPT)
DREDF Responds to "Ashley Treatment" - Modify the System not
the Person (DREDF)
WPAS Conducting Preliminary Investigation
into "Ashley's Treatment"(WPAS)
JOINT STATEMENT ON “THE ASHLEY X TREATMENT” by the Arc, US and
United Cerebral Palsy(Joint)
Feminist Response
in Disability Activism (FRIDA) Demands Ethics and Accountability from the AMA
(Chicago) Today, Feminist Response in Disability Activism (FRIDA), with the
support of other disability groups, is staging an "Ashley Treatment"
demonstration at the national headquarters of the American Medical Association
(AMA) in Chicago at 515 N. State Street.
FRIDA will demand that the AMA start practicing real ethical accountability
and dialogue with the disability community. The AMA has been a major but unacknowledged
player in the widespread debate over the so-called "Ashley Treatment."
The "treatment" included a hysterectomy, removal of breast buds and
massive infusions of estrogen, all with the intent of maintaining a childlike
size and appearance for the rest of her life.
The AMA sanctioned the so-called "Ashley Treatment" through its publication
of the original case article in the Archives of Pediatric and Adolescent Medicine.
The editors of this AMA-owned journal went so far as to call for further "study"
of the issue by subjecting more children to the same drastic surgeries and follow
them over time.
We hereby make the following demands of the American Medical Association:
§ That the American Medical Association issue a formal statement condemning
the practice of growth attenuation procedures such as the so-called "Ashley
Treatment." When the affected person is not at risk of death, such a procedure
should be defined as a breach of medical ethics. The formal statement should
be disseminated within the AMA membership by the most effective internal means,
as well as to the public at large.
§ That members of the AMA Council on Ethical and Judicial Affairs meet
with a team of representatives from FRIDA, ADAPT and NDY to review the disability
position on the "Ashley Treatment," and release the results of that
meeting to its membership.
§ That the AMA issue a statement from its Board of Trustees supporting
community-based supports as outlined in MiCASSA, to be delivered to key members
of the U.S. Congress, as well as to all AMA members through the most effective
internal means.
Feminist Response in Disability Activism
614 W. Roosevelt Road
Chicago, IL 60607
Contact: Monica Heffner, (312) 253-7000
Blog: http://fridanow.blogspot.com/
Contact: Sharon Lamp (847) 894-4907, Stephen Drake (708) 209-1500; (708) 420-0539,
Amber Smock Ambity@aol.com
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Self-Advocates Becoming Empowered: Statement on "Ashley
X"
For more information contact: Julie Petty - 479-409-3390
peoplefirstark@yahoo.com
Self Advocates Becoming Empowered is the national self advocacy organization
whose mission is : To ensure that people with disabilities are treated as equals
and that they are given the same decisions, choices, rights, responsibilities,
and chances to speak up to empower themselves; opportunities to make new friends;
and to learn from their mistakes.
Members of Self Advocates Becoming Empowered feel angry, sad, and outraged with
the decision made by doctors, Ashley's parents, hospital administrators and
the American Medical Association that violated Ashley's 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 selfish actions taken by Ashley's
parents put other people with disabilities at risk of being denied their human
and civil rights.
To all people with disabilities and people who believe in human rights, SABE
calls you to action. Don't let what happen to Ashley happen to others. We hold
the medical profession accountable for not upholding their oath "to do
no harm."
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ADAPT Youth Appalled at Parents Surgically Keeping
Disabled Daughter Childlike
Youth members of the national disability rights organization, ADAPT, today expressed
shock and outrage on behalf of the entire national membership of ADAPT at the
news of nine-year-old Ashley from Seattle, whose parents had her uterus, appendix
and breast buds removed, in addition to having her undergo hormone injections
in order to minimize her height and weight as she grows older. In their blog,
Ashley's parents have rationalized these drastic measures to manipulate Ashley's
size and physical maturity by saying it will be easier for them to care for
her and involve her in family activities.
As a young woman with a disability, I am extremely disturbed on multiple levels
by Ashley's situation, said Amber Smock of Chicago, Illinois. I am angry that
Ashley's parents, the medical establishment and society at large think it is
acceptable to surgically and hormonally manipulate Ashley because the reality
of her adulthood as a person with a disability is too "grotesque"
for them. With these drastic measures, her parents and doctors are physically
reinforcing the disrespectful attitude held by many that people with disabilities
are all childlike, and can be treated like property or science experiments.
Ashley has now become a modern day symbol of the long and dishonorable tradition
of sterilizing people with disabilities. In 1927 the U.S. Supreme Court decision
in Buck vs. Bell upheld that tradition as a way to eliminate defectives from
the gene pool. Today, parents and others rationalize sterilization by saying
it will prevent any possibility of pregnancy from abuse. Ashley has not been
reported to be at risk of either abuse or pregnancy, and her parents say that
her only caretakers are themselves and her grandmother. Ashley's parents also
say in their blog that removal of her uterus will prevent her from having periods.
For over two decades there have been far less invasive means of suppressing
menstruation in women when medically indicated. It is not known why Ashley's
parents resorted to the much more invasive procedure of a hysterectomy.
Perhaps even more distressing to those of us with disabilities, said Smock,
is that a medical ethics committee supports treating Ashley not as a human being,
but as a ˜problem" to be managed in a way they wouldn't consider or
allow for other children. We have enough difficulty with the medical establishment's
power over our lives, and its lack of recognition of disability as a social
status and not a medical problem that must either be cured or killed. This case
opens the door for other people with disabilities to be subject to mutilation
and chemical castration, simply because we have a disability.
The severity of Ashley's disability does not mean that it's okay to treat her
as less than a full human being, continued Smock. The impact of Ashley's situation
is not limited to just her and her family. Ashley's mutilation has started us
down a slippery slope where her case could very well be used as a precedent
to damage one person with a disability after another. Instead of mutilating
children, we need to put our energy into assuring that people with disabilities
and their families have the support they need to age naturally and live lives
of quality in their own homes and communities.
On behalf of ADAPT, Youth ADAPT members encourage the Seattle Childrens Hospital
ethics committee that approved the invasive procedures to issue a statement
acknowledging the socially and other harmful aspects of what Ashley's parents
are now touting as the "Ashley treatment."
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DREDF Responds to "Ashley Treatment" -
Modify the System not the Person
"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. The recent
story about nine-year old Ashley, a child with severe disabilities, exemplifies
this problem. When she was six, Ashley's parents requested that their daughter
be treated with medications (large doses of estrogen) to halt her physical growth,
and with surgeries to remove her breasts and uterus.
These interventions were undertaken at the Children's Hospital of the University
of Washington, School of Medicine in Seattle, after consultations with the medical
center's ethics committee.
An article about the case appeared in the October 2006 issue of Archives of
Pediatrics and Adolescent Medicine (160:1077-1078) and MSNBC first reported
the story on November 1, 2006. Ashley is now nine years old, with an expected
final height of 4'5" and a weight of 75 pounds. The physicians involved
with Ashley's care have expressed the opinion that she will never achieve a
cognitive level greater than that of a three-month old. Ashley's parents, who
call her their "Pillow Angel" , argue that they can care for her more
easily if she remains permanently small, and that she as well as they will benefit
from these medical interventions. The case was reported by the Los Angeles Times,
the Associated Press, CNN, and many other media outlets on January 4, and it
has since raised a firestorm of debate.
We deeply empathize with parents who face difficult issues raising children
with significant physical and intellectual disabilities. However, we hold as
non-negotiable the principle that personal and physical autonomy of all people
with disabilities be regarded as sacrosanct. For decades, parents, families,
and the disability community have been fighting for this principle, and for
community-based services for children and adults that make it a reality. Their
advocacy led to enactment of state and federal laws in the 1970s that establish
extensive rights to full personhood for children and adults with disabilities.
These laws were passed to remedy our shameful history of abuse and mistreatment
of people just like Ashley.
As parents and adults with disabilities, our experience demonstrates unequivocally
that all people with disabilities can be an integral part of home and community,
if needed help and support is available. It is not always easy to find home
care workers who are competent and empathetic. Too often, we must fight to persuade
social service and healthcare bureaucracies that help at home and appropriate
equipment such as adapted wheelchairs and mechanical lifts are essential and
fundamental to our autonomy.
However, if these problems seem insurmountable, or cannot as a practical matter
be surmounted, as Ashley's parents suggest, then it is all our duty to change
the system so it works rather than find novel ways to modify people so that
they will more easily "fit" a flawed system.
Where, we wonder, was the network of programs and services that exist in every
state when Ashley's family decided the best option was to employ medical procedures
that violated their daughter's autonomy and personhood? Were other families
whose children have disabilities like Ashley's asked to talk about their experiences
and how they solved problems as their children grew to adulthood?
Where were the social workers and advocates who should be providing alternative
perspectives? Why did the system fail this family and their daughter? That,
it seems to us, is a fundamental question.
Beyond these apparent institutional failures, the conduct of Ashley's physicians
and the ethics committee's decision in this tragic story should be widely questioned
- there are future implications for other families and their children who have
significant impairments. We rely on healthcare professionals to alleviate pain
and suffering and maintain functionality, not decide when someone is worthy
of holding human rights. 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.
It is ironic in light of this story that the United Nations General Assembly
recently adopted the first convention of the twenty-first century - the Convention
on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.
Recognizing that the rights of people with disabilities to autonomy and personhood
are still violated by many nations around the world, Article 17 of the Convention,
entitled "Protecting the integrity of the person," reads, "Every
person with disabilities has a right to respect for his or her physical and
mental integrity on an equal basis with others." In our view, Ashley has
been denied her basic human rights through draconian interventions to her person.
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WPAS Conducting Preliminary Investigation into "Ashley's Treatment"
On January 6, 2007, after receiving complaints and concerns about what press
reports are calling "Ashley's Treatment", the Washington Protection
and Advocacy System (WPAS), pursuant to its federal authority, opened a preliminary
investigation into this treatment. David Carlson, an attorney and WPAS Associate
Director of Legal Advocacy, is assigned as lead investigator.
We are concerned with what we have read and heard in the media accounts. We
want to learn the facts so that we can make a determination, among other things,
as to whether or not all of the requirements of applicable law were met. Once
we complete our investigation, we will determine what, if any, additional steps
will be necessary.
Under our federal mandate, we have requested documents from Children's Hospital
and Regional Medical Center in Seattle through its counsel. Counsel for Children's
Hospital has stated that the Hospital intends to cooperate fully with our investigation.
We will not be commenting further to the press on the investigation at this
time. Questions regarding the Washington Protection and Advocacy System and
its federal authority may be directed to Mark Stroh, Executive Director or Deborah
Dorfman, Associate Executive Director and Director of Legal Advocacy.
Washington Protection and Advocacy System
Mark Stroh mstroh@wpas-rights.org
Deborah Dorfman debbied@wpas-rights.org
Voice (800) 562-2702
TTY (800) 905-0209
JOINT STATEMENT ON “THE ASHLEY X TREATMENT” by
the Arc, US and United Cerebral Palsy
January 26, 2007
The decision by the parents of a young girl with disabilities to medically restrict her physical growth and maturation, now known as “The Ashley Treatment,” has sparked renewed debate of the rights of people with intellectual and developmental disabilities.
We believe that loving parents who are caregivers are not granted special dispensation to sanction irreparable and irreversible surgeries to alter their son or daughter’s physical being primarily for their own convenience or comfort. In this case, the decision drastically altered Ashley’s life. The ethics panel that approved the decision to perform these medical procedures on Ashley provided insufficient counsel to the family and the doctors, since they failed to account for Ashley’s fundamental rights as a person with intellectual and developmental disabilities. In published accounts of the ethics review, consideration of Ashley and her stake in her own civil and human rights was absent. No child with a significant disability would have been similarly treated without legal charges against the parents and physicians.
For decades we have worked to ensure that people with intellectual and developmental disabilities have the same civil and human rights that others enjoy, and that they have the same respect and dignity that all persons receive. Too often, people with intellectual and developmental disabilities are treated as perpetual children. As advocates, we are acutely aware of the profound difficulties parents of sons and daughters with disabilities face, and we know that most of us need support and information so that we may provide the best possible care and nurturance to our children as they grow and become adults.
We remain committed to working together to ensure that all-encompassing and infantilizing interventions such as this are not promoted by our public policies. We work to ensure that communities are aware of the needs of all children and adults who live with significant disabilities, and of the concerns of their families. By learning to include, respect, and value people with the most significant disabilities, we can improve all of our communities.
It is vital that families who are overwhelmed by their care-giving responsibilities can access affordable, appropriate supports and that young persons with disabilities have access to meaningful self-advocacy supports and training. The “Ashley Treatment” has strengthened our collective will to foster improved communication and a better understanding of disability issues among physicians, ethicists, and policymakers. We are certain that decisions and policies are strengthened by the participation of people with disabilities, their families, and their advocates.