April 01, 2005

Terri Schiavo: Rest in Peace

Terri Schiavo, RIPMoral/political football no longer, Terri Schaivo's 15-year ordeal, whether you believe she was "in there" all this time or not, deserves ultimate wishes for rest, in peace, now that the pornographic gaze of the media has lost interest in the matter with her anti-climactic declaration of death. Even today as we await word of Pope John Paul's imminent death, half a world away, in some ways, we're grateful this is all now somehow "over".

Meanwhile, a few days ago, Slate.com had a great essay from a woman named Harriet McBryde Johnson, a disability-rights lawyer in Charleston, who shared her dilemma. Comparing her situation to that of Terri Schiavo, "...due to a congenital neuromuscular disease, I am having trouble swallowing, and it's a constant struggle to get by mouth the calories my skinny body needs. For whatever reason, I'm still trying, but I know a tube is in my future. So, possibly, is speechlessness." Here're three of her points of argument that I found absolutely compelling in deciding Ms. Schiavo's fate:

    3. This is not a case about a patient's right to refuse treatment. I don't see eating and drinking as "treatment," but even if they are, everyone agrees that Ms. Schiavo is presently incapable of articulating a decision to refuse treatment. The question is who should make the decision for her, and whether that substitute decision-maker should be authorized to kill her by starvation and dehydration.

    4. There is a genuine dispute as to Ms. Schiavo's awareness and consciousness. But if we assume that those who would authorize her death are correct, Ms. Schiavo is completely unaware of her situation and therefore incapable of suffering physically or emotionally. Her death thus can't be justified for relieving her suffering.

    5. There is a genuine dispute as to what Ms. Schiavo believed and expressed about life with severe disability before she herself became incapacitated; certainly, she never stated her preferences in an advance directive like a living will. If we assume that Ms. Schiavo is aware and conscious, it is possible that, like most people who live with severe disability for as long as she has, she has abandoned her preconceived fears of the life she is now living. We have no idea whether she wishes to be bound by things she might have said when she was living a very different life. If we assume she is unaware and unconscious, we can't justify her death as her preference. She has no preference.

Later, she comments, "I hope that I will not outlive my usefulness or my capacity (at least occasionally) to amuse the people around me. But if it happens otherwise, I hope whoever is appointed to speak for me will be subject to legal constraints. Even if my guardian thinks I'd be better off dead—even if I think so myself—I hope to live and die in a world that recognizes that killing, even of people with the most severe disabilities, is a matter of more than private concern."

Ms. McBryde Johnson adds, "The whole society has a stake in making sure state courts are not tainted by prejudices, myths, and unfounded fears—like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred. While we should not assume that disability prejudice tainted the Florida courts, we cannot reasonably assume that it did not."

Let's just hope all those affiliated with the Schiavo matter moving forward fails to amuse our news media from here on out as much as they apparently have thus far... maybe then, they'll leave them alone to their grief and acceptance of the loss of a daughter, wife and friend.

- Arik

Posted by Arik Johnson at April 1, 2005 08:39 PM