Civil Rights and Medical Care

People with disabilities are often subjected to involuntary medical procedures, denied life-sustaining treatments, and discriminated against by the medical profession in other ways that violate their civil rights, according to a study released in May by the National Disability Rights Network.

Devaluing People with Disabilities: Medical Procedures That Violate Civil Rights, was prompted by the 2007 case of “Ashley X,” a Seattle girl with several physical and developmental disabilities who, at the wishes of her parents, underwent hormone treatments, a hysterectomy and other procedures designed to keep her small in size and childlike. According to NDRN — a nonprofit member organization for protection and advocacy systems and client assistance programs — Ashley X and other cases are not uncommon and are emblematic of longtime bias against people with disabilities in the medical and bioethics communities.

This bias “has involved not only abuse, neglect [and] discriminatory segregation in institutions, but it has also included eugenic sterilization,” said the report’s executive summary. “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.”

News of the report’s release propagated rapidly through disability-related blogs and social networking sites, and has received endorsements from numerous national disability organizations. “We’ve gotten a very positive response from the disability community,” says NDRN executive director Curt Decker. The report, he says, is the first to looks at these issues from “a civil rights and not a medical ethics perspective.”

A copy of the full report can be downloaded at www.ndrn.org.

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