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Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights
May 2012
Disability Rights Washington and National Disability Rights Network
315 5th Ave S, Ste 850, Seattle, WA 98104
Authors
David Carlson, Cindy Smith, Nachama Wilker
Contributors
National Disability Rights Network: Cindy Smith, Nachama Wilker, Curtis Decker, Eric Buehlmann, Zachary Martin, Jane Hudson, David Card
Disability Rights Washington: David Carlson, Andrea Kadlec
Initial funding for this report came from the National Institute on Disability and Rehabilitation Research (NIDRR).
A Letter from the Executive Director
Right now, somewhere in America, parents or guardians are sitting down with a doctor to discuss withholding life sustaining medical treatment in situations where there is no terminal disease or removing their child’s sex organs, breasts buds, and stunting growth with hormone treatments. The latter practice, commonly called the Ashley Treatment after the first known child to undergo this procedure, is the latest and most disgraceful point on the long continuum of ways our society devalues and violates the rights of people with disabilities.
These conversations happen because the persons being considered are viewed as having little value as they are. They are considered not as fully human, endowed with inalienable rights of liberty, privacy and the right to be left alone—solely because they were born with a disability.
The thought of doctors and parents, together, deciding to remove the body parts and stunt the growth of a child based on assumptions about their awareness and quality of life is shocking and disgusting. In one case that stunningly illustrates the assumptions made about these “burdensome” people, a jury in Oregon awarded parents $3 million because their child was born with Down syndrome after pre-natal testing failed to identify the disability. It was called a “wrongful birth.” The reality that this has happened—and is happening–in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse. The National Disability Rights Network—in an effort to
shed some light on this barbaric practice and thrust the medical community that supports it into the 21st century—has released this report called Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.
In my more than 30 years as a disability rights attorney and advocate, I often think that I have seen every type of discrimination and harm inflicted on people with disabilities. Unfortunately, humanity still finds a way to surprise and shock even me.
While many people find the Ashley Treatment to be eugenics, not medicine, others in the medical community, doctors, medical ethicists, hospitals, and even some parents of children with disabilities argue that no harm has been done because the individuals are believed to be too disabled to know, in their minds justifying the practice of making medical decisions that violate civil rights.
My question is why?
Every person is born with civil and human rights and an inherent dignity. The presence of a disability does not change that fact. Yet, every day people with disabilities have to fight to be recognized as a whole person.
Yes, we have made many positive advancements like the Americans with Disabilities Act and the movement to end institutionalization. However, when something like the Ashley Treatment is permitted, even encouraged, it is a slippery slope toward a world where people with disabilities have no value, no rights, and no dignity.
Curt Decker
Executive Director
Table of Contents
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
Executive Summary……………………………………………………………………………………………………… 9
Evolution of Civil and Human Rights Protections for Individuals with Disabilities…….. 13
Parents and Professionals Often Make Medical Decisions for Individuals with Disabilities Without Representing the Individual’s Interests: A Case Study: Ashley X .. 19
Published Perspective of Ashley’s Parents…………………………………………………….. 19
Withholding Life Sustaining Treatment…………………………………………………………… 26
Early Reaction of the Public, Self-Advocates, and the Disability Movement……………… 31
Perspectives of Individuals with Disabilities (2012)……………………………………………………. 33
Recommendations……………………………………………………………………………………………………… 53
Appendix A: Ashley Treatment Discussion Group Outline………………………………………… 57
Appendix B: Expert Panel Participants List………………………………………………………………… 61
Appendix C: Expert Panel Reviewers List………………………………………………………………….. 63
Executive Summary
Five years ago, news broke worldwide that a six-year-old child with developmental and physical disabilities, Ashley, was given growth attenuation treatment via estrogen and had her uterus and breast buds removed. The intent of the treatment was to keep her permanently small. The child’s parents and doctors claimed that this set of procedures was in her best interest for numerous reasons, including that it would make it easier to care for her at home. Supporters of the treatment claim that this is the most personal of family decisions and there is no need for external judicial review of the decisions made by the family.
People with disabilities and advocates in the disability rights movement, however, assert that all individuals, regardless of their disability status, have individual rights that cannot be ignored. Decisions like those made in this case are the most personal of “personal rights,” not “family rights.” Every individual person has the right to bodily integrity, clearly recognized in our legal tradition, through the constitutional rights of liberty and privacy and the common law right to be left alone unless the individual chooses to have their body disturbed in some way. Individuals with disabilities, no matter the nature or severity of their disability, are no different. The Constitution and antidiscrimination laws make it clear, all people, including people with disabilities, are entitled to equal treatment under the law.
Anne’s Story1
I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s…Given that Ashley’s surgery is irreversible; I can only offer sympathy to her and her parents. For her sake, I hope she does not understand what has happened to her; but I’m afraid she probably does. As one who knows what it’s like to be infantilized because I was the size of a 4-year-old at age 18, I don’t recommend it.
-Anne McDonald
Ashley’s treatment ignited a firestorm of press, articles in scientific and other ethics journals, blog posts, websites, position papers from disability activists, and an investigation by Disability Rights Washington (the Washington Protection and Advocacy agency). The Disability Rights Washington investigation resulted in an agreement with the hospital where the procedure was performed where the hospital acknowledged that Ashley’s rights had been violated and agreed to a number of required safeguards for children with disabilities, including a requirement for a court order if such
procedures were considered in the future, and the inclusion of a person who has a disability, or an understanding of disability from a civil rights perspective, on their ethics committee.
The controversy sparked deliberations in the media that focused on who was right and how we as a society can and should make decisions about individuals with disabilities, especially children. Many articles claimed that no harm had come to Ashley because her intellectual functioning would not allow her to ever understand what had been done
to her. In many of these discussions, the rights of children were blended with the rights of their parents. However, when a parent seeks to permanently and potentially unnecessarily alter a child’s body through invasive and irreversible procedures, this blended view of rights is inappropriate, as a potential or actual conflict of interest may exist. In these situations, it is imperative that the child’s rights be untangled from those of their parents. When the child in question has a disability, the questions become even more complex.
Since Ashley’s treatment, her parents report that they have been contacted by thousands of families interested in the treatment and they believe that at least a hundred children have undergone the same treatment.2 A recent Guardian article published in March of 2012 reported on a ten year old girl who underwent a similar set of procedures and a seven year old boy who had his growth attenuated.3
The procedures Ashley and the others received were not conceived in a vacuum. The United States has a shameful history of how it has treated children and adults with disabilities dating back more than one hundred years and continuing today.4 This history has involved not only abuse, neglect, discriminatory segregation in institutions, and exclusion from receiving an education, but it has also included eugenic sterilization as an attempt to prevent the genes of individuals with disabilities from being passed onto future generations.5 Such actions reinforce social attitudes that devalue the lives of people with disabilities, supporting assumptions about their ability to participate in community life and their overall worth to society.
Gail’s Story 6
Sarah was given the same diagnosis that Ashley had – the same microcephaly and cerebral palsy and even the 9-month-old expected age range – years before Ashley got her diagnosis. I think a lot happened to Ashley before her parents even had a chance to know her. These decisions were made for her before they could see her as a whole person. I didn’t really know any of my children by the time they were six. They couldn’t articulate what they would become. We don’t expect this of our children without disabilities. Why did Ashley have to hold up to a different standard?
– Gail Lainhart-Rivas, Sarah’s mother