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'Is this a disability rights case?'

by Alan Toy

Much has been said and written about the Terri Schiavo case lately. Many in the disability community have rallied to save Terri from starvation, while others of us have watched uncomfortably as this is made into a momentous struggle for survival. This issue is a divide among us that can become painful, if not argued carefully, using our heads as well as our hearts. There is a tendency in the disability community to address policy issues around the independent living, self-directed lives from a highly charged emotional perspective.

Whose movement is it, anyway?
by Cal Montgomery

If you ask me, the best part of Alan Toy's essay is his call to temper emotion with reason. On this we agree. It's not that emotion has no place in public debate: when we pretend policy decisions are being made rationally and dispassionately we're simply hiding the values and emotions that guide us under data. But emotion should never be our only guide.

Our agreement is short-lived: I think his essay on the Schindler-Schiavo case fails to give reason its due in three major areas.

First: respect for the facts. Medical experts strongly disagree about what Terri Schindler-Schiavo can and cannot do, what she may and may not be able to learn to do (the history of the diagnosis "persistent vegetative state" is troubled and troubling) . And the disagreements aren't between religious Right and humanitarian Left: they're much more nuanced.

To demand that we suspend our critical faculties and simply accept as revealed truth what the physicians on only one side of a court fight have to say is not, in my book, to promote reason. It is to promote ideological subservience -- in this case ideological subservience to a fragment of a medicalized worldview -- and such subservience is itself the enemy of reason.

Second: respect for one another. Toy disagrees with those working on the Schindler-Schiavo case under the disability rights banner. Given his stress on the feeding tube as the only thing that allows Terri Schiavo to eat, he probably doesn't think that starvation and dehydration have the same meanings here as they do when a personal care attendant is the only thing that allows a quadriplegic to eat. But it is clear that the activists whose work he opposes see "eating" as "eating" -- no matter how one gets the food.

He can understand them being emotional, though, he says; he too gets emotional -- over "able-bodied people parking in spots reserved for people with disabilities." Comparing what they clearly regard as murder to a parking violation and comparing these activists' work to an act of property damage is disrespectful to the activists, to their understanding of what disability rights is all about, and to the very possibility of reasoned debate in this case. It can do nothing but promote frustration, anger, mistrust, and ultimately deep, deep schisms between those people who agree with Toy and those who don't. It can only undermine reason.

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I can't say that I fully agree with this approach, but it certainly is understandable. I too get "flooded" with emotion over little injustices, like able-bodied people parking in spots reserved for people with disabilities who have identifying placards. I have done some stupid things in my time too, such as running my wheelchair push rim or keys along the nicely painted sides of such people's vehicles.

So, I can absolutely understand the emotions behind right to die (or live) cases like Terri Schiavo's. But they are mostly emotional rather than intellectual arguments. And in this particular case, I'm having a lot of difficulty understanding its relevance to things I strive for every day as an activist.

Many have cast the Schiavo case as a classic disability rights case, pointing their fingers accusingly at any who dare to disagree. Terri's case is made more difficult by the surrounding circumstances that include family rights and seem to indicate financial conflicts of interest. And in the midst of a highly volatile family battle, the Florida legislature, Governor Jeb Bush the Christian right and many in the disability leadership, among others, have all joined the fray. All purport to know what is "best" for Terri Schiavo, a woman who, according to her doctors, has lost most of her cerebral cortex.

These "friends of Terri" say, among other things, that she could be "trained" to eat, or that her husband is only interested in her money, or worse, that he may have been somehow involved in her heart attack, which was caused by a potassium deficiency. They say she "communicates" with her parents and visitors, that she responds to questions and that she "bolted upright" when told, by phone that she was to be taken off her feeding tube.

They also question the motives and credentials of every professional who opines that Terri is indeed in an unconscious state and incapable of purpose or decision-making, which is at the center of all disability rights issues, i. e., choice.

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Back to Terri Schiavo and the Disability Rights Movement


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