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, 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.

Disability Rights Education and Defense Fund
Berkeley, California
January 7, 2007