MindFreedom International joins the Disability Rights Education and Defense Fund (DREDF), ADAPT, the Feminist Response in Disability Activism (FRIDA) and numerous other disability rights activists in expressing our horror and outrage at the news of nine-year-old Ashley, a child with intellectual and physical  disabilities 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.

MindFreedom International supports the following statement issued by DREDF on Ashley’s behalf. We would like to draw your attention in particular to the last paragraph of the statement issued by DREDF that states that “the United Nations General Assembly recently adopted the first convention of the twenty-first century – the Convention on the Rights 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.”

Below is the full text of the DREDF statement followed by an action alert issued by FRIDA. These documents and more are available on the website of the American Association of People with Disabilities at  http://www.aapd.com/News/bioethics/indexbioethics.php

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” (see their blog at http://ashleytreatment.spaces.live.com/blog 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.

Source: Disability Rights Education and Defense Fund

http://www.dredf.org

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ACTION ALERT: Speak Out About the Ashley Treatment Fax, E-mail, and Phone Campaign

Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, invites you to speak out about the Ashley Treatment.

Our Targets: Seattle Childrens Hospital staff involved in the case of nine-year-old Ashleys growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Childrens Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Childrens Hospital.

Why: To oppose their permission of what is now known as the Ashley Treatment, and to condemn further permission of such treatments for children with disabilities whose lives are not otherwise at risk.

When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

Contact Info:

Dr. Douglas Diekema, 206-987-2380

B-5520 Emergency Medicine

4800 Sand Point Way NE

Seattle, WA 98105

Fax: (206) 987-3836

E-mail: Douglas.diekema@seattlechildrens.org

Dr. Daniel F. Gunther

Phone: (206) 987-2380

M1-3 Endocrinology

4800 Sand Point Way NE

Seattle, WA 98105

Fax: (206) 987-3836

E-mail: Dan.gunther@seattlechildrens.org

Melinda Gates

PO Box 23350

Seattle, WA 98102

Phone: (206) 709-3100

Fax: (206) 709-3252

Email: mailto:info@gatesfoundation.org

Susan Macek

Director of Communications, Seattle Childrens Hospital

Phone: (206) 987-5201

Pager: (206) 469-6310

E-mail: susan.macek@seattlechildrens.org

Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Childrens Hospital are having her undergo hormone therapy to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The Ashley Treatment, as her parents call it, is a medical fix to serious social problems we face in America today. The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.

To review Ashleys parents blog, please see:

http://ashleytreatment.spaces.live.com/

To review one of the original articles as reported by the BBC, please see:

http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stm

We need to let the Seattle Childrens Hospital and its fundraising Chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.

For more information, AND TO KEEP US POSTED OF YOUR ASHLEY TREATMENT ACTIVITIES, please call Sharon Lamp at (847) 803-3258 or e-mail Amber Smock at ambity@aol.com.

Source: Feminist Response In Disability Activism (FRIDA)