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Devaluing People with Disabilities

Medical Procedures that Violate Civil Rights

Libertyweb

Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights is intended to provide a crucial but missing link in the discussion about how society can and should make medical decisions that uphold the constitutional rights and inherent dignity of people with disabilities.

by David Carlson, Cindy Smith, and Nachama Wilker


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Download the executive summary, recommendations

Endorsements

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.

There is no such thing as being too disabled.  The doctors told my parents that I would be a vegetable and would not be able to do anything in life.  If they could see me now.
-Ken

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.   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. 

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.   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.   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.  

In recent years, new types of assistive and medical technology and procedures have emerged that allow people with disabilities, even those with the most significant disabilities, to live longer lives and improve their quality of life to live outside of institutions in their own homes in the community.  The legacy of eugenics however, and the basic discriminatory structures that underlie it, are still powerful factors in medical decision making by some doctors and surrogate decision makers for people with disabilities.  These technologies and procedures have not only been used to enhance quality of life, but they have also been used, at times, to reinforce social policies that devalue people with disabilities and keep them separate from community life.  In fact, there are times, as this report will describe where physicians recommend and family or other surrogate decision makers decide to not provide a needed transplant, to withhold medical treatment including hydration and nutrition of individuals without a terminal condition, or to sterilize people all on the basis of their disabilities.  Applied in these ways, medical decision making and procedures are discriminatory and deny basic constitutional rights to individuals with disabilities including the rights to liberty, privacy, and other statutory and common law rights.

Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights provides a crucial, but missing, link in the discussion about how society can and should make medical decisions that uphold the rights and inherent dignity of people with disabilities.

The report puts individuals with disabilities at the center of this discourse.  It reviews the facts of Ashley X, as a case study for a larger discussion and presents a continuum of common experiences and treatment of individuals with disabilities within a context of medical decision making.  The report explores the potential and actual conflict of interest that medical decision making may present between a parent and his or her child.  It describes the vital role that the legal system has in ensuring that the civil and human rights of individuals with disabilities are protected.  The report discusses how the deprivation of these rights is harm within and of itself and that all individuals have substantive rights regardless of the severity of their disability.  It goes on to outline how discrimination inherently causes harm to both the person who experiences the discriminatory conduct and society as a whole.  Finally, the report presents a series of recommendations for how the legal and medical systems at the local, state, and national level, including protection and advocacy agencies, ethics committees, institutional review boards, and the courts can perform critical “watchdog” functions to ensure that the human and civil rights of individuals with disabilities are protected.

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