Who Pays for Life With Dignity? By BECKY O'MALLEY Editorial

Tuesday March 29, 2005

The only dignified voice to appear in the midst of the outrageous media circus which has been created around the slow death of Theresa Marie Schindler Sciavo has been that of the disabled community. Ms. Schindler Sciavo is familiarly called in the media by her childhood nickname, Terri, reflecting her dependent status in recent years as a childlike love object for her birth parents and as the legal ward of the husband she married at a young age. Since she can no longer speak for herself, a great deal of space has been devoted to speculation about what she “would have” or “might have” wanted, with no concrete information available to answer this question.  

Less-than-admirable established politicians were falling all over themselves to take positions which they believed would please a substantial segment of the voting public. Many Republicans came out against the states’ rights position which they preached during the civil rights movement. Some Democrats abandoned their historic reliance on the federal government as the protector of individual rights against possible encroachment by the states. It now appears, if we are to believe the polls, that they all got it wrong.  

A weekend Planet correspondent seems to have captured the real mood of many in the public, both Republicans and Democrats, with a one line unsigned comment: “Where is the money coming from and for the last 15 years, are they paying out from Medicare, and if so is that the reason our monthly payments have increased?”  

That’s exactly what thoughtful members of the disabled community are worried about. This isn’t really about the last wishes of poor young Ms. Schindler Sciavo, whose personal medical catastrophe seems to have been caused by a potassium deficiency which was the result of bulimia, a vomiting disorder often caused by the patient’s belief that she is “too fat.” There’s been little discussion about the circumstances surrounding her purported statement that she might prefer death to disability, no examination of her possible frame of mind when she might have said what she’s not been proven to have said. 

Such questions are raised by thoughtful disabled people when “death with dignity” bills are under discussion. There’s a clear implication in some of these discussions that the life of a disabled person is somehow lacking in dignity, no matter how much bill sponsors choose to deny it. There’s an underlying calculation of the costs of maintaining helpless individuals, with the concomitant temptation to fear, like our correspondent, that “saving her might be costing me.” There’s a tendency to applaud the human tendency to say that “I don’t want to be a burden,” though it often arises from the same kind of low self esteem that is associated with eating disorders in young women like Terri. 

The most compelling irony in the Sciavo situation is that as the disingenuous Congressional Republicans try to exploit it, they are also working hard to dismantle the federal government’s financial support for vulnerable individuals. Without comprehensive no-questions-asked health care, which has never existed in this country and which is getting farther away all the time, being “pro-choice” doesn’t mean much when the question is how disabled or incapacitated people can choose to keep living under extreme conditions without the money to do so. 

A few congressional Democrats are finally trying to make some sense of the legal issues involved. Senator Tom Harkin of Iowa, who has supported the disability rights movement for many years, told reporters recently that, “Where there is a genuine dispute as to what the desires of the incapacitated person really are, then there ought to be at the end some review by a federal court outside of state jurisdiction.” This only makes sense, since state courts can and do differ wildly on these issues. Just because the Schindler-Sciavo dispute seems to have been captured by the anti-abortion crowd doesn’t mean that there aren’t many important and genuine questions that need to be answered. 

Excellent analysis from the perspective of the disabled community can be found in the online magazine Ragged Edge (raggededgemagazine.com), including Senator Harkin’s complete statement explaining his position. Progressives (and conservatives) are prone to knee-jerk assertions that the correct answers to questions like these are obvious, but that’s not true here. Terri Schiavo will eventually die, whether soon or later, but the dilemma her case has highlighted will not disappear with her death.  

—Becky O’Malley?