Who speaks for Terri Schiavo?

Who speaks for Terri Schiavo? -
Mary Johnson
Tuesday, March 22, 2005

"We didn't know what Terri wanted," Michael Schiavo told TV's Larry King on Friday. "But this is what we want."

The tragic case of the woman who cannot speak for herself has politicians intoning about the "sanctity of life" and right-to-die advocates insisting it should be a private family matter. For the organized U.S. disability-rights movement, the issue is one of civil and constitutional rights.

In the state of Florida, a spouse is legally empowered to act on behalf of his or her incapacitated mate. But laws differ from state to state. This is one of the reasons that major disability-rights groups have long wanted federal review of such cases.

Most of us who are not disabled cannot imagine "living like Terri." But the disability-rights movement is made up of individuals who themselves are living lives that, previously, they may not have been able to imagine, either. Individuals who can communicate only via high-tech devices have said they were long thought to be unable to think or feel. People who have experienced aphasia, people who have had strokes and people with brain injuries communicate similar things.

To these people, the case of Terri Schiavo looks very different. Who better to understand the issue than those whose lives hinge on the same understanding?

"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 national 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.

More than two dozen national disability-rights groups -- including the American Association for People with Disabilities, the National Coalition on Self-Determination, Self Advocates Becoming Empowered and the World Institute on Disability -- have been worried about the Schiavo case. Many have been following this case for years, feeling that crucial questions remain unanswered. The case echoes other, less public ones: It's a rare week that passes without some report of a spouse killing his or her elderly mate, or parents ending the life of their disabled child. Is it any wonder disability- rights activists are alarmed? Guardians too often value the life of their ward far less than the ward values his or her own life.

Two years ago, more than a dozen disability groups urged the Florida courts to "require a genuine application of the due-process standard" and require "that Terri's wishes be proven by clear and convincing evidence," consistent with the standard set by the U.S. Supreme Court. It didn't happen.

"There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability," Sen. Tom Harkin, D-Iowa, said to reporters on Saturday. Harkin, who has worked on disability-rights issues for decades, said "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, as there is in this case -- that a federal court come in, like we do in habeas corpus situations, and review it and make another determination."

As the Schiavo case so tragically proves, it is past time for Congress to pass a law requiring this review process.

Mary Johnson is editor of Ragged Edge Online
(www.raggededgemagazine.com)
and author of "Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights" (Avocado Press, 2003).