Rights groups for disabled join in fight

WASHINGTON -- Prayers and references to a ''culture of life" have defined the public face of the emotionally-charged Save-Terri Schiavo movement dominating the airwaves this week. But a critical piece of the coalition is disability rights groups, whose ties to Democrats could produce bipartisan legislation creating a more extensive federal role in cases involving the removal of life support.

Disability rights groups have struck an uneasy alliance with Christian conservatives and are prepared to use the partnership to press for broad legislation restricting the ability of families to remove life-sustaining treatments from patients unable to communicate their wishes.

''Both sides of the culture war want to make this about their issues," said Diane Coleman, whose group, Not Dead Yet, was named for the same refrain in the movie ''Monty Python and the Holy Grail."

Disabled-rights supporters ''as a whole lean toward being prochoice" on abortion, Coleman said, but worry about protecting individual rights of incapacitated people who might be considered a burden to both relatives and authorities. Coleman added that the partnership with Christian conservatives is ''very awkward."

But it's a partnership that has been critical to their cause. Last weekend's extraordinary late-night congressional session produced a bill, signed into law by President Bush, that forced a federal review of a state judge's order to allow the feeding tube removed from the brain-damaged Schiavo, a 41-year-old Florida woman who can breathe on her own but can't eat. Even one objection would have delayed Senate action, but Democrats took their cue from Senator Tom Harkin of Iowa and let the motion go forward.

Harkin is a longtime ally of disability groups and a coauthor of the 1990 Americans with Disabilities Act. Last week, he worked with Senator Mel Martinez, Republican of Florida, and Senator Rick Santorum, Republican of Pennsylvania, on legislation allowing federal review of the Schiavo case.

''Senator Harkin's role was very, very key in terms of Senate leadership. Because Senator Harkin has been a leader on disability rights, Democrats were willing to give him deference, " said Marilyn Golden, policy analyst at the Disability Rights Education and Defense Fund.

While Republicans have supported a number of disability measures -- the Americans with Disabilities Act was signed into law by George H. W. Bush -- liberal lawmakers such as Harkin have been among the robust champions in Congress on such issues as affordable housing and transportation access for people with disabilities.

Disability rights groups and Christian conservatives are allying at a time when the US Conference of Catholic Bishops has launched a campaign to end capital punishment, an effort that will put the conservative organization in the cultural trenches alongside staunchly liberal groups.

At least one public poll conducted this week suggested that -- as in the antideath penalty movement -- the lines in the battle over withholding life-sustaining care is not strictly based on labels like Democrat and Republican, liberal and conservative. A new CNN/USA Today/Gallup poll indicated that Democrats, Republicans, and independents differed only slightly in their views on removing Schiavo's feeding tube, with 62 percent of Democrats, 54 percent of Republicans, and 54 percent of independents agreeing with the state court order.

Conservative Christian leaders say that when Congress returns to session, they will work closely with disability activists to press legislation providing for federal court reviews of cases where a state judge has authorized the withdrawal of life-sustaining treatment. The Schiavo legislation that passed both the House and Senate early this week included language saying Congress should consider a broader investigation into the ''status and legal rights of incapacitated individuals who are incapable of making decisions concerning the provision, withholding, or withdrawal of foods, fluids, or medical care."

''This is an area where you really do get a common, united front of left and right," said Burke Balch, director of the Powell Center for Medical Ethics at the National Right to Life Committee.

While the bill was driven by the Republican leadership, some Democrats could join a broader effort to examine the entire right-to-die issue, possibly backing a federal avenue of appeal in cases like Schiavo's.

''The Schiavo case reinforces the notion [among Democrats] that this is something Congress needs to look at," said Jim Manley, spokesman for Senate Democratic Leader Harry Reid of Nevada.

While disability rights groups and social conservatives want similar action from Congress on this issue, they arrive at their positions from different places. While religious conservatives talk about preserving life as a moral duty, disability activists -- concerned with individual rights -- are intent on battling the common belief that people would prefer death to severe disability, a stereotype that they consider discrimination.

These activists consider themselves voices for incapacitated patients who can't communicate their views. ''Even the most loving family may have conflicts of interest," said Coleman, who uses a wheelchair and a nighttime ventilator because of a spinal disability.

Disability rights activists also inject economic fairness into their arguments, contending that many patients don't have access to treatment that might enable them to revive. And they contend that a large portion of cases labeled ''persistent vegetative state," the category doctors apply to Schiavo, are misdiagnosed.

Some, though not all, conservative Christians believe a right to life should supersede even ''living wills'' left behind by a patient. Most disability rights activists say living wills should take precedence, but maintain they have limited value.

''People can't foresee what they would necessarily wish for in all situations," said Golden.

Disability activists have latched onto the Schiavo case in recent years as a way to press for federal review of decisions by third parties to withhold life-sustaining treatment for people who cannot give their own consent. ''State courts tend to devalue people with disabilities," said Golden, arguing that over the past three decades courts have expanded the ability of family members, doctors, and judges to speak for incapacitated patients.

Disability groups and Christian conservatives first found common ground in the dispute over Dr. Jack Kevorkian, the self-styled promoter of physician-assisted suicide who aided in the deaths of severely ill patients. After protesting outside Kevorkian's home, antiabortion groups offered donations to the newly formed Not Dead Yet, but were turned down because members didn't want to get involved in the abortion battle.

''Now we have a bylaw against prolife contributions," said Coleman.

But while disability groups want to keep their distance from social conservatives, they are actively hostile toward groups on the left, such as the American Civil Liberties Union, that have supported right-to-die cases.

''Disability is not a fate worse than death," said Coleman.