Read 20+ Nat'l Disability Groups' Statement on Schiavo

Legal appeals seem to be exhausted. All that is left is the watching and waiting. Barring the unforseen, Terri Schiavo will soon die.

CARTOON: Theresa Whitehurst

Which is true? This fact is incontrovertible: we simply do not know.

This is about beliefs now. For a very long time that is all it has been about. It has ceased being about "facts." Like the O. J. Simpson murder trial, which resolved nothing in the public's mind, either, appeals to reasoning and to the facts of the case simply seem beyond the point when one looks at the reality. For the reality is that this case, this life, has gripped the American public in a way that politicians will never forget.

Many within the disability rights movement are troubled by all of it in a way that they are still groping to articulate. Much of it has to do with their longterm allegiance to the left. To their frustration and anger about the movement's seeming coalition with the religious -- Christian -- right. Much of it has to do with fears of how the disability movement will be perceived, long term. This "devotion to Terri Schiavo," as one put it to me, will hurt us in the end.

Maybe. Maybe not. It's too soon to tell, probably.

Here are some things we have heard from readers in recent days, many who simply wrote to us, or posted comments on listservs. They did not write for publication, but what they said seemed to us to get at the core of the issues for our movement:

"If Terri said one word -- just one word -- and doctors heard her -- her life would be spared." The reader was making two points. First, that the public relies on doctors much as in the past societies relied on their priests and shamans: if a doctor saw it, and pronounced it, it would be true. Others who believe Terri has consciousness are discounted. Second, that the ability to communicate in a way meaningful to the hearer was the signal that "a person was in there," as someone else put it.

"And what does that say about disabled people who can't communicate? Are they all to be put to death?"

Such comments sound hysterical to many of us. Yet they are strongly held beliefs -- and they often come, it seems to us, from people who themselves fear they will someday be seen to be "not a person." Or they believe that they are already invisible.

If one can boil down to a single cause the reason so many disabled people are insisting, for once, that this is first and foremost a disabilty rights issue, is this: they see in the treatment and attitudes toward Terri Schiavo the treatment and attitudes that they believe society holds about them.

Put another way: Terri Schiavo represents to them what society thinks -- and values -- about life with a severe disability.

And that scares them very much.

It scares them almost as much that the people they want to believe have their best interests at -- liberals -- are the ones who, it seems, are the most hostile to seeing Terri as "a person."

They hate being aligned with the Right to Life. But the Left, they think, has abandoned them. And in this case they may very likely be right.

Of course, one should never try to settle on a "single cause" where people's emotions are concerned.

"Existence means consciousness, awareness, animation," one letterwriter said. If Terri Schiavo she does not have a consciousness, is her existence valid?

That seems to be the question as posed by liberal, non-disabled people. It is actually a kindly way of putting it, compared to some of the comments we've received.

But at least some disability rights activists would respond like this: "We do not know whether Terri Schiavo has a consciousness -- and doctors' assurances mean little to us." Doctors -- who continually insist she doesn't -- have been wrong about this point with so many people so many times that they simply cannot be trusted to know, say disability rights experts. This view is the one that most distinguishes the disablity rights perspective on this case. The disability rights movement refuses to automatically accept the medical establishment's perspective.

Along with this goes the concept of "getting better." People who say Terri Schiavo cannot possibly have a consciousnesses will often concede that if there were hope for her to"get better" they might re-think their position. Disability activists' perspective is this: The right to remain alive should not, must not, hinge on one's ability to "get better."

There will be time to debate these issues. After Terri Schiavo, there will be plenty of time.

A number of those who have emailed us have questioned why Michael Schiavo, her husband and legal guardian, has been unwilling to allow further tests -- particularly the newer MRI scans that neurologists say can now more clearly determine if an apparently "brain-dead" individual shows signs of consciousness. It does seem that, had Michael Schiavo allowed such tests, it would have put to rest much of the hysteria that surrounds the conviction that she may still be "in there," despite what doctors say.

We are left with this question: After Terri Schiavo, what about the rest of us? It might not seem a serious question, or the correct one. But it seems, from what we've read, that to many severely disabled people it is the overriding question.

Posted March 25, 2005

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