Study Finds Medical Procedures Violating the Civil Rights of People with DisabilitiesStunting growth, removing body parts with no judicial review
For Immediate Release
5/22/2012Contact: David Card
202.408.9514 x122
press@ndrn.orgWashington, DC – In a first of its kind study, the National Disability Rights Network (NDRN) determined that performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities.
The initial catalyst for the report is the so-called Ashley Treatment which received worldwide attention 5 years ago. Ashley was a six-year-old child with developmental and physical disabilities whose growth was stopped through estrogen treatments and whose uterus and breast buds were removed. The intent of this treatment was to keep her permanently small and child-like. NDRN believes this practice is spreading worldwide.
“The thought of doctors and guardians, 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,” said NDRN’s executive director, Curt Decker
Further investigations by the nation’s federally mandated Protection and Advocacy agencies, which NDRN represents in Washington, DC, have uncovered other cases in which medical treatment and even basic food and water are being denied to individuals with disabilities during minor illnesses with the intent of letting the illness progress until death.
“We have learned of one case in which the parents of a 13-year-old boy with a developmental disability refused to allow him access to antibiotics so that the cold he had would progress to pneumonia. They got their wish and the boy died,” said Decker.
“Every person is born with civil and human rights and an inherent dignity,” continued Decker. “The reality that this 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. This report is meant to start the conversation about how society can and should make medical decisions that uphold the constitutional rights of all people with disabilities.”The report, Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, puts individuals with disabilities at the center of discourse. It reviews the facts of Ashley X, as a case study and presents a continuum of similar experiences and treatment of individuals with disabilities within a context of medical decision making that devalues them as people and discriminates against them based on their disability.
The report explores the conflict of interest that medical decision making may present between a parent and their child. It describes the vital role that the legal and judicial systems have in ensuring that the civil and human rights of individuals with disabilities are protected regardless of their severity and in contrast to opinions regularly expressed in the medical and ethics community.
Finally, the report presents a series of recommendations for how the legal and medical systems at a local, state and national level, including protection and advocacy agencies, ethics committees, institutional review boards, and the courts can perform critical “watch-dog” functions to ensure that the human and civil rights of persons with disabilities are protected.
Find more information about the report and medical decision making here.
A copy of the report can be downloaded here.# # #The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States.
Not Dead Yet played a role in objecting to the series of rights violations to a young girl’s body that came to be known as ‘Ashley X,’ in which the ‘treatments’ radically altering the young girl’s physical body became synonymous with the girl herself. To give full credit where it’s due, the group Feminist Response In Disability Activism (FRIDA), led the efforts to rally disability rights activists when the public discourse was being led by the parents of Ashley X, the doctors involved in the experimental and illegal surgery (they broke laws), transhumanists imitating disability-related professionals, and some of the more repugnant representatives of the larger bioethics field (Art Caplan was a notable exception among the bioethics crowd in harshly criticizing the procedures Ashley X was subjected to).
And, of course, Not Dead Yet has tracked the cases that have been made public involving the denial of life-preserving treatment to disabled people by guardians/parents and healthcare providers. We filed an amicus brief in the Pennsylvania Supreme Court in regard to one of these cases involving denial of medical care (Parents and medical providers lost this one).
I’ll try to have more up on this in the next few days – some more about the history and the proposals contained in the report. Suffice it to say that we’re all very grateful to NDRN for opening the door on medical practices that violate the civil rights of disabled people – and that we fear have been on the rise. This is an essential first step in terms of putting the brakes on those trends. –Stephen Drake