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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)

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

American Medical News PROFESSIONAL ISSUES
http://www.ama-assn.org/amednews/2007/02/05/prsa0205.htm (free part only - avaiable by subsrciption only)

Growth-curbing therapy spurs rights dispute The "Ashley treatment" developed for a girl with severe disabilities raises the medical ethics question: For whose benefit was it done? By Kevin B. O'Reilly, AMNews staff. Feb. 5, 2007.

The parents of a 9-year-old girl with static encephalopathy went public last month with the story of how they chose to attenuate the child's growth using high-dose estrogen therapy. The "Ashley treatment," so dubbed by the girl's parents on a personal Web site, prompted outcries from the disabled rights community and left doctors and ethicists discussing how to draw the line between a reasonable medical treatment and a human rights violation.

Ashley's story came to light last fall when the girl's physicians published a case history in the October 2006 Archives of Pediatric& Adolescent Medicine in which they defended the use of growth attenuation in cases like Ashley's. The girl is permanently nonambulatory with the mental faculties of an infant. There is no hope for improvement.

The parents and the girl's physicians at Seattle Children's Hospital argue that what some see as a violation of Ashley's right to natural physical development will make it easier for her to be cared for at home and stay involved in family activities. The growth-attenuation therapy, begun when Ashley was 6, means the child likely will stay at her current height of 4 feet 5 inches. At the parents' request, physicians also gave Ashley a hysterectomy to prevent menstruation and surgically removed her breast buds to ease physical discomfort and prevent potential abuse later in life if she is cared for in an institutional setting.

An interdisciplinary hospital ethics committee approved the treatment, but that oversight is not enough, according to some disabled rights activists.

"This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the disabled rights group Not Dead Yet, which led a protest outside AMA headquarters in January to condemn the Ashley treatment.

"Accommodation, not operation," yelled a crowd of more than a dozen activists, many using wheelchairs, before assembled TV news cameras. It is only because society is unwilling to give caregivers the resources they need to provide care for their disabled loved ones at home that alternatives such as the Ashley treatment seem appealing, activists argue. The protesters also condemned the AMA for publishing the Ashley article in one of its journals. In a statement, the Association said it has no control over what its editorially independent journals choose to publish.

Ashley's parents, who have remained anonymous and are not granting interview requests, say each medical intervention was done not for their benefit but for their daughter's.

"Ashley sets the barometer in our home," the parents write on their Web site. "When she is happy we're happy, and when she is not, we're not."

For example, Ashley becomes extremely agitated if a single strand of hair lands on her face and cries -- the only way she can communicate -- for help. The parents say they are availing themselves of medical technology to alleviate the child's potential discomfort if she were to grow to normal adult size. Bathing her, changing her position frequently and moving her about in a jury-rigged double baby stroller are easier if Ashley stays her current size, the parents write. Assessing the ethics

The question of who benefits from a medical intervention when surrogates are deciding is ethically crucial, experts say. The AMA's Code of Medical Ethics states, "If there is no reasonable basis on which to interpret how a patient would have decided, the decision should be based on the best interests of the patient, or the outcome that would best promote the patient's well-being." The AMA declined to comment on Ashley's case.

The chair of the Christian Medical and Dental Assns.' ethics commission, Robert Scheidt, MD, argues that, in this case, it is true that some benefit accrues to the parents because the interventions make it easier to care for Ashley. But, he said, the primary benefit accrues to the patient. The fact that the parents also benefit, a kind of ethical double effect, should not discount how Ashley gains from reducing the risk of bed sores and by receiving lifelong care from loving parents and siblings.

"People who are opposing this are citing the rule of medicine, 'Do no harm,' but that's just a broadside that doesn't address the situation," Dr. Scheidt said. "If they really do no harm and don't do anything, then are the parents eventually going to have to institutionalize this girl? That's very harmful."

Whether Ashley and children similar to her actually will benefit from growth attenuation is still unclear, and that colors the ethical calculus, according to Jeffrey P. Brosco, MD, PhD, clinical services director of the Mailman Center for Child Development in Miami.

Dr. Brosco, who co-authored an editorial on Ashley's case when it was first documented in the Archives of Pediatric & Adolescent Medicine last fall, said further Ashley treatments should occur under a research paradigm to assess carefully the risks and benefits of the interventions and to ensure more rigorous ethical scrutiny.

"As it stands now, any individual practitioner could do this tomorrow and there are no institutional safeguards to stop it from happening," Dr. Brosco said.

"Given that we have such a long history of discrimination against individuals with disabilities and the medical profession has not done a good job of protecting against that, we should want outside control in each case."

A spokeswoman for Seattle Children's Hospital said neither Ashley's
physicians nor ethics committee members were granting interviews.