Schiavo Raised Profile of Disabled

An unidentified woman sifts through signs left by demonstrators outside the Florida hospice where Terri Schiavo died. (Charles W. Luzier -- Reuters)

"On a personal level, it's a very threatening precedent," said Nancy Thompson, chairwoman of the board of directors of the National Catholic Partnership on Disability, whose son has undergone 53 surgeries for a rare birth defect.

Some of the fears might be tinged with paranoia, said Mary Johnson, editor of the online disability rights magazine Ragged Edge. "But when you have a group that feels [it is] thought of in that manner, you have to respect there is a reason why they don't feel welcome in society."

For John Kelly, 47, Schiavo was no more terminally ill than he is, and her feeding tube was no different from his catheter.

"How exactly did taking in food and water get reclassified as medical? It sure doesn't seem medical to us," wrote the Boston-based activist in Ragged Edge. "Without the reclassification . . . Michael Schiavo would not [have been] able to have her killed. So we disabled people conclude that feeding tubes became medical interventions when another justification was needed by the compassionate killers to knock another one of us off."

But many others with disabilities reject the notion of victimhood. And several prominent disability organizations -- including the Brain Injury Association of America, the Christopher Reeve Paralysis Foundation, the Parkinson's Action Network and the ALS Association -- were noticeably silent on the Schiavo case.

"We're independent; we're working, living in the community," Hwang said. "Just to have somebody say we are vulnerable, that's patronizing and insulting."

Paul Spiers, a professor at the Massachusetts Institute of Technology who was paralyzed from the chest down in a riding accident 10 years ago, has those feelings of vulnerability when he navigates his wheelchair down a darkened street.

But the solution, said Spiers, who is on the board of the right-to-die group Compassion and Choices, is to fight for funding, education and greater legal protections. The group promotes physician-assisted suicide laws modeled after Oregon's, saying legal safeguards are preferable to the unregulated practices of other states.

Some leaders in the disability community "keep shouting their vulnerability, but a lot of people who are disabled worked very hard to not be viewed as vulnerable," he said.

There remain deep, painful rifts in the community over Schiavo and right-to-die issues, said Marvin Wasserman, a New York-based activist who suffers from seizures. He was disturbed by the rhetoric labeling Michael Schiavo a murderer who "starved" his wife.

"In the absence of a living will, the spouse is often the one individual who best knows what his or her partner would want," Wasserman, 60, said.

A decade ago, when his quadriplegic wife had terminal cancer diagnosed, he refused entreaties to assist her in committing suicide. But when doctors declared her brain-dead, he removed life support, as she had instructed. "Everybody has a choice to make decisions about the quality of their own lives," he said.

Although they disagree about the Schiavo case, Wasserman and Coleman both complained that politicians were quick to exploit the tragedy and slow to deliver meaningful assistance to disabled Americans.

"The right wing wants to kill us slowly and painfully" with limits on health programs such as Medicare and Medicaid, Not Dead Yet's Coleman said. "The left wing wants to kill us quickly and call it compassion."