Newsday's Paul Vitello brings the Schiavo case home

My Daughter May Dance
Paul Vitello

March 31, 2005

In dreams, my 12-year-old daughter sometimes talks. She once said "yes" in a dream. Another time, she walked. There was a dream once where she walked and talked. That was very exciting.

These are my dreams. 

If she has similar ones, she can't tell me. She is severely disabled and has been so since she was 10 months old, when she suffered brain damage during a surgery. She cannot walk, talk, or feed or dress or otherwise fend for herself.

Like many parents of disabled children, I sometimes dream her "well." It is a form of fervent wishing, I suppose. But I think of it also as a kind of wake-up call, if dreams can be called that - a way for my deeper self to remind my regular self never to give up hope

I don't know if the parents of Terri Schiavo, the severely brain-damaged woman being denied food and water in Florida, have dreams in which Terri snaps out of the damaged state she's inhabited since her heart attack in 1990. I imagine they do.

They claim to have seen her getting better over time. They say she'd be better off still if doctors hadn't insisted on describing her as "vegetative," and if her husband hadn't denied her therapies over the last seven years.

But I can tell you this. When my daughter was first injured, a team of neurologists looked at her brain scan results and wrote her off as pretty much "vegetative." Most doctors we subsequently took her to studied her EEG reports more carefully than they ever studied her. But she was and is not an EEG report.

She's a kid who - sometimes, though not always - gives you her hand when you ask for it; who smiles when you speak to her; who can pat the red object when you present her a red and a green object and ask her to touch the red one.

This is beyond what Terri Schiavo might be able to do, apparently. But so what?

At what point would those who determined that Terri Schiavo's life was not worth living be confident in ruling that my daughter's life - limited as it is to those few, inconsistently performed acts of awareness - was also not worth living?

This is the question underlying the growing unease with which many disabled people and their loved ones have viewed the Schiavo story, especially since her feeding tube was removed two weeks ago.

How can anyone know what constitutes another being's life-worthiness?

A columnist for another newspaper, writing about Schiavo, stated with awesome certitude the other day that, "The inescapable prison of her body and inert cranial cavity is surely the worst kind of hell for her soul ..." But how does he know what is the worst kind of hell?

What if Terri Schiavo feels pleasure when she's fed, and comfort when she's touched? What kind of hell is that, exactly?

"We totally object to any cognitive test for 'personhood,'" said Diane Coleman, president of Not Dead Yet, a Chicago-based national organization of disabled people opposed to assisted suicide and what they see as a growing euthanasia movement in the United States. "The use of such testing will inevitably result in the non-voluntary euthanasia of many people with disabilities - based on society's prejudiced judgment of our 'quality of life.'"

Her group joined more than 20 other disability rights groups in formally opposing Michael Schiavo's legal efforts to discontinue his wife's feeding and hydration.

Coleman is not against people choosing health care proxies, or people choosing to die. She is against legal guardians making such life-and-death decisions for the disabled without their true consent - as she believes is the case with Terri Schiavo and her husband, Michael.

It doesn't much matter to people in Not Dead Yet, or to me for that matter, that the Republican Party and the Right to Life movement have taken up positions on this issue that pretty much match their own.

It's not about Republicans, or about Operation Rescue, though both those groups seem to have tried to make it so.

The issue is Terri Schiavo and all the other severely disabled people who may not enjoy the level of "quality" in their lives that some consider the minimum requirement, but who are alive.

And who may dream. One doesn't know. In her dreams, my daughter may dance. 

Copyright 2005 Newsday Inc.

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