Disability Advocates Support and Thank Tom Harkin
Schiavo Case is About Disability Rights

For more information: Diane Coleman or Stephen Drake (708) 209-1500 exts. 11 & 29
708-420-0539 (cell)

FOR IMMEDIATE RELEASE

March 20, 2005 -- It's time for the press to talk to the real experts on the Schiavo case, the disability rights movement. Not Dead Yet has led the disability community's opposition to non-voluntary euthanasia for a decade. Diane Coleman, the group's founder and president, and Stephen Drake, its research analyst, are available in Chicago to discuss the disability angle on the recent legislative and legal developments in the case.

The "right to life" movement has embraced Terri Schindler-Schiavo as a cause to prove "sanctity of life." The "right to die" movement argues that people in guardianship should have no protection against private family decisions to kill them. Yet the life-and-death issues surrounding Terri Schindler-Schiavo are first and foremost disability rights issues -- issues which affect tens of thousands of people with disabilities who, like Ms. Schindler-Schiavo, cannot currently articulate their views and so must rely on others as substitute decision-makers.

That's why 26 national disability rights organizations have adopted a position in support of Terri Schiavo's right to continue to receive food and water. The evidence that Ms. Schiavo would refuse tube feeding is so unclear and conflicted that it does not satisfy legal standards. The lower court in Florida can pretend otherwise, and the Florida appellate courts can refuse to question the lower court judge, but it serves society poorly to give guardians such an unfettered right to kill.

"We applaud Senator Tom Harkin, the long time supporter of the civil rights of people with disabilities, for his insight into the disability issues that underlie this high profile case," said Coleman, "and for his political courage in working beyond partisanship to uphold our fundamental rights."

"Bioethicists like Art Caplan have tried to make this part of the right vs. left culture war," said Drake, "but that's a shallow and dishonest portrayal of what's going on in our health care system. While he talks about patient choice on TV, Caplan has been advocating futility guidelines (see below) that give doctors the authority to overrule family decisions back in Pennsylvania. His hypocrisy has gone unnoticed in the media, where he works to silence the voice of the disability rights community."

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The following paragraphs are from "Penn hospital to limit its care in futile cases" (Philadelphia Inquirer 11/4/2002):

"By the early 1990s, many doctors began to worry that some dying patients were getting too much care. Patients and their families, concerned that HMOs and money-conscious hospitals were trying to cut costs, were getting less trusting. Now, conflicts are more likely to be between families who want more and doctors who want less.

Arthur Caplan, director of Penn's Center for Bioethics, said doctors have compounded the problem by offering families a menu of choices.

"That's not the best way to approach the family," Caplan said, "because it makes the family feel responsible for ending the life of their loved one."

It's better to say, "In our best judgment, sadly, there's nothing more we can do. We're going to begin the process of stopping aggressive care."

Doctors could also head off disagreements by explaining life support better on the front end. "You should never start an intervention, a feeding tube, dialysis, where you haven't had a little bit of discussion about when you're going to stop it," Caplan said.