Why Schiavo case worries the disabled

Why Schiavo case worries the disabled

WILLIAM G. STOTHERS

First thing:Terri Schiavo is not terminally ill. She is severely disabled with a brain injury. She is not hooked up to any life-support systems. For 15 years she has relied on a feeding tube for food and water. Her organs function normally.
So why does anyone want to kill her? "Kill" is the correct word here. Removing her feeding tube will cause her death. She will die by starvation and dehydration.
For those of us in the organized disability rights movement, it looks like Schiavo is being put to death for the crime of being disabled.
Disability makes many people uncomfortable. How many times have you said, or heard someone say, "I would never want to live like that." Or, "I would rather be dead than be like that."
People have said that to me. I am severely disabled and use a motorized wheelchair as a result of having polio 55 years ago.
Doctors told my parents to put me into a "home" and forget about me. He will have no life, they said, move on with your own lives.
They ignored the advice. When I went to school, I was teased and made an object of pity. "I would hate to live like you," kids told me. When I went to university, I was told that "at least you still have your mind." When I went to work in the newspaper business, I was expected to remain at an entry level position; when I left to go to graduate school, my work supervisor told a colleague "what else could he ever hope to do?"
People with disabilities are pushed to the ragged edge of our collective consciousness, stereotyped as dependent, unproductive and pitiful. It is not such a long step to considering such persons burdensome and too costly to maintain and finally, and of course regrettably, expendable.
Think of Schiavo for 15 years being held in so-called custodial care in a nursing home along with persons with Alzheimer's disease, other dementia or cognitive disorders or birth defects. She has had a feeding tube and her guardian (her husband) fought for years to have it removed so that she might die, as he claims she would have wanted.
"It's one thing to refuse a feeding tube for ourselves, but it's quite another when someone else makes that decision," says Diane Coleman, head of Not Dead Yet, a U.S. disability-rights group. "Disability groups don't think guardians should have carte blanche to starve and dehydrate people with conditions like brain injury, developmental disabilities — which the public calls birth defects — and Alzheimer's. People have the right not to be deprived of life by guardians who feel that their ward is as good as dead, better off dead or that the guardian should make such judgments in the first place."
The noisy free-for-all surrounding the Schiavo case as it works its way through the courts again has all the earmarks of political haymaking, rallying the troops in the "Right to Life" and "Right to Die" camps. But there is a serious thread that focuses on the real issue at stake: The right to due process and equal treatment under the law.
Coleman's group has called for a national moratorium on the dehydration and starvation of people alleged to be in a "persistent vegetative state" and not having an advance directive or durable power of attorney.
Senator Tom Harkin, a long-time advocate for people with disabilities, said it eloquently last week as Congress stepped into the case.
"There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability. There ought to be a broader type of a proceeding that would apply to people in similar circumstances ... Where someone is incapacitated and their life support can be taken away, it seems to me that it is appropriate — where there is a dispute — that a federal court come in, like we do in habeas corpus situations, and review it and make another determination."
Schiavo has become a tragic figure, and is likely to become a martyr for one group or another. And that itself is a tragedy. We're likely to never really know her own desire in this case. But as individuals and as a society do have a duty here, and that is to face the fact of the brutal way in which we are permitting her to die.
As a person with a severe disability, I am deeply troubled by the Schiavo saga. I will commit my own wishes to a legal document. But will that be enough? Out here on the ragged edge, we're worried.
William G. Stothers is deputy director of The Center for an Accessible Society in San Diego, Calif. He is a former Toronto Star reporter.

http://www.thestar.com/