New NDRN Report on Medical Procedures That Violate the Rights of People with Disabilities

Just out from the National Disability Rights Network: a very important report entitled Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.  From the 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. 

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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.