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Schiavo Raised Profile of Disabled

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."

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

_____Terri Schiavo Dies_____
Photo Gallery: A photographic look at the Schiavo case.
Video: Brother Paul O'Donnell announces Schiavo's death.
Guardian's Report: Report by Dr. Jay Wolfson, guardian ad litem for Theresa Marie Schiavo, for Gov. Jeb Bush and the Fla. 6th Circuit Court.
Terri Schiavo's Unstudied Life (The Washington Post, Mar 25, 2005)
_____Family Reaction_____
MSNBC Video: George Felos, attorney for Michael Schiavo, addresses the media after Terri Schivo's death.
MSNBC Video: Terri Schiavo's sister Suzanne and brother Bobby Schindler's comments to the media.
_____Bush Statement_____
President Bush Video: President Bush urged the country to honor Terri Schiavo's memory by working to "build a culture of life."
Transcript:Text of Bush's comments on the death of Terri Schiavo.
_____News Analysis_____
GOP, Democrats Look for Symbolism in Schiavo Case (The Washington Post, Apr 1, 2005)
Q&A Transcript: Post staff writer Manuel Roig-Franzia discussed the Schiavo case.

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.

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