Need For A Disability Rights Watchdog?
The possible need for some sort of disability rights watchdog was recently raised in a Washington Post op-ed column by a disability rights lawyer who has a neuromuscular disease. The article, "Overlooked in the Shadows" made a number of essential points including that "all people, incapacitated or not..." have a "federal constitutional right not to be deprived of...life without due process of law."

The attorney explained that if she were ever in a situation where could not make her wishes known, "I hope whoever is appointed to speak for me will be subject to legal constraints. Even if my guardian thinks I'd be better off dead -- even if I think so myself -- I hope to live and die in a world that recognizes that killing, even of people with the most severe disabilities, is a matter of more than private concern."

In support of her view, the author quotes Sen. Harkin (D-IA) stating, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated."

More importantly, the key concern expressed by the author is that "society has a stake in making sure state courts are not tainted by prejudices, myths and unfounded fears -- like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred."

Although Winston does not pretend to know the "right" answer in any specific instance, he does think that an independent disability rights watchdog could play an important role in ensuring that medical care decisions, whatever they may be, are not influenced by prejudice, myth or fear.