Many In Disability Groups Want Protection For Schiavo

TAMPA - Young Angel Watson had tumbled on snow skis, flipping and skidding down a mountain, smashing her head on a boulder. Critically injured, whisked to a hospital, she was undergoing an MRI when her heart stopped.

She was revived, but physicians told her boyfriend that she had lapsed into a persistent vegetative state. Hope for recovery: none.

Now, 15 years later, she has a full-time job, a daughter, a car. A paraplegic who helps others with rehabilitation, Watson has watched the Terri Schiavo case unfold with unease - and a certain measure of fear.

"What's next?" she asks, as she monitors the tug of war between Schiavo's parents, who want to continue her care, and her husband, who wants to withdraw the feeding tube keeping the 39-year-old alive in a Pinellas Park hospice.

"Who's going to debate whether my life is worth living?" asks Watson, accessibility coordinator with the Caring and Sharing Center for Independent Living in Largo. "What are you going to do to us next? Put us on an island? Blow us up?"

If the Schiavo case is framed by many as a square-off of right-to-life proponents against those who lobby for the right to die with dignity, some disabled people see a different debate. They think Schiavo is disabled and entitled to protection.

"It really doesn't matter what ability Terri has," says Stephen Drake, research analyst with Not Dead Yet, a disability rights group based in Illinois. "The most disturbing thing is the perception that she's no longer a living person. People are saying the best thing is for her to formally die.

"But the main issue here from our perspective are what are Terri's rights? Not her parents', not her husband's. When do you start drawing a line, saying here's where people don't count?"

Drake says this is not the first time physicians and disabled rights advocates have been at odds.

A national debate followed disclosure in the late 1970s and early 1980s that newborns with spina bifida and Down syndrome were being allowed to die in hospitals. Congressional legislation was passed to outlaw the practice.

Drake hopes the Schiavo case will spark similar action.

"We want a thorough analysis, state by state, of the laws involving people getting killed by withholding food and water," says Drake, who says his brain was damaged at birth during a forceps delivery, his parents told he would be a "vegetable" for the rest of his life.

His parents opted to fight for him instead, he says, and he endured a number of surgeries in childhood that restored his health.

Meaning Of "Disabled'

Not Dead Yet and 11 other national disability groups have filed friend-of-the-court briefs to oppose the removal of Schiavo's feeding tube. More than 20 have signed a joint statement that states, "Withholding medical care based on the belief that a person rationally wants to die because of a disability is discriminatory, especially when there is no proof that this would have been their choice." The complete statement is at www.raggededgemagazine.com.

Schiavo's husband, Michael, has said she told him she would not want to live under such circumstances, but her parents, Bob and Mary Schindler, have said they know of no such wishes. Terri Schiavo left no written instructions. She suffered heart failure at age 26, leading to her current medical condition.

David Schenck, a professor of biomedical ethics and literature at the University of South Florida, says he thinks disability is not an issue in the case because most physicians have said Schiavo is in a persistent vegetative state and has no hope of recovery.

"I don't think she's disabled," he says. "She doesn't have abilities."

Schenck discounts the view that if the feeding tube is removed, it sets a dangerous precedent for disabled people.

"I do not think it's a slippery slope here," he says. "What the court has upheld [in the Schiavo case] happens every day in every state to hundreds of people. It's a terrible, terrible tragedy, but I think it's a perfectly natural sort of occurrence. It's perfectly legitimate when you're not going to reverse her condition.

"Where it gets iffy is how extraordinary or ordinary is tube feeding. Two hundred years ago, we didn't even have plastic tubing, so this wouldn't have been an issue."

Personal And Political

Doug Towne, executive liaison with Disability Relations Group in St. Petersburg, a public relations firm, worries about Schiavo's fate and what it means for disabled people. But he has drawn the ire of some because he doesn't unequivocally condemn her husband.

"It's a tragic situation on all sides, that the law has put Michael in the position of having to decide whether or not to starve his wife to death," says Towne, who is blind. "The law has never dealt with this. All life is precious."

Towne echoes some disabled people's belief that Schiavo's condition is not permanent and that, with consistent rehabilitation, she could make progress.

He cites cases in which people thought to be in irreversible comas have regained consciousness.

Towne also calls withdrawing the feeding tube "barbaric."

"How do we know she doesn't feel pain?" he asks.

But even as those with disabilities put themselves in Schiavo's place and worry about the precedent, others analyze the meaning of the tragedy in a different - yet equally personal - way.

Bill Overlock, who uses a wheelchair and sells them for Wheelman Enterprises in Winter Haven, says he, too, has been affected by the case.

"I've worked with a lot of brain-damaged people, and I say if I'm that way, pull the plug," he says. "I feel very sorry for her, but my wife, a physical therapist, and I have both concluded that they should just let her go."