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Question Swirl About End-of-Life Issues

By Ceci Connolly
Washington Post Staff Writer
Saturday, April 2, 2005; Page A09

For many disabled Americans, seeing the final images of Terri Schiavo was like looking at a terrifying picture of themselves -- undervalued and at the mercy of others.

"We do not identify with the spouse or the parents," Diane Coleman, president and founder of the disability rights group Not Dead Yet, explained just days before Schiavo's death. "We identify with her. She is one of us."

The battle over the severely brain-damaged Florida woman sparked a wave of congressional and legal wrangling and a renewed interest in end-of-life directives. But for many who are disabled -- whether from a recent accident or a lifelong illness -- the case triggered a much more immediate, personal reaction.

Watching the Florida drama from the opposite coast, it looked as though Schiavo was "put to death for the crime of being disabled," said William G. Stothers, deputy director of the Center for an Accessible Society. "Among the disability rights community, it is a generally held belief that in society at large the view is 'better dead than disabled.' "

Distrustful of the medical establishment and worried they may be considered a "burden," disabled people such as Stothers fear they may be one ER visit away from becoming the next Terri Schiavo.

"What happens if I go to the hospital and they say, 'He's so disabled anyway, should we do these heroic measures?' " said Stothers, who contracted polio 55 years ago and now uses a wheelchair. "It scares me."

Although Schiavo, 41, may not have appeared handicapped in the conventional sense, "to people who have disabilities or advocates for people with disabilities, they [saw] Terri Schiavo as a disabled person," said Lennard Davis, a professor of English and Disability Studies at the University of Illinois in Chicago. "People with disabilities perceive they are on a continuum between themselves and Terri Schiavo."

Immediately after her death Thursday, Schiavo's brother, Bobby Schindler, linked his sister to the cause: "Terri, your life and legacy will continue to live on as the nation is now awakened to the plight of thousands of voiceless people with disabilities that were previously unnoticed."

Internet chat rooms dedicated to disability issues have revealed a range of reactions, said Karen Hwang, 37, a quadriplegic in New Jersey.

"For some people, the big fear is being kept alive in this persistent vegetative state," as Schiavo was for 15 years, Hwang said. "I'm one of them. For others, it's that somebody will put them to death prematurely."

In the closing weeks of Schiavo's life, as her family fought in court over whether to reinsert her feeding tube, members of Not Dead Yet took their place on the protest lines, several ditching their wheelchairs to sprawl on the street outside Schiavo's Florida hospice. The case, which centered on whether Michael Schiavo was the appropriate guardian for his wife, highlighted problems with the current system, Coleman said.

"The concern is that our guardians are being given carte blanche to starve and dehydrate us to death without any meaningful safeguards," she said.

Some disabled people were unconvinced that Schiavo had no higher-brain functioning. Others argued that even people in her condition have the ability to bring meaning to other people's lives. But overwhelmingly, the objections centered on personal fears.

Even many who have a living will worry that a time may come when they are unable to communicate their desire to live, and a nondisabled person will make faulty assumptions. Many talk of a "slippery slope" on which the life of a disabled person is increasingly devalued.

"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."

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