Obligatory Terri Schiavo Post

I have nothing of substance to add to the debate (there’s plenty of that elsewhere). I did think this article today at Slate was pretty good. It’s by Harriet McBryde Johnson who is a disability-rights lawyer in South Carolina.

One thing in particular she says is worth highlighting:

Despite the unseemly Palm Sunday pontificating in Congress, the legislation enabling Ms. Schiavo’s parents to sue did not take sides in the so-called culture wars. It did not dictate that Ms. Schiavo be fed. It simply created a procedure whereby the federal courts could decide whether Ms. Schiavo’s federally protected rights have been violated.

In the Senate, a key supporter of a federal remedy was Iowa Sen. Tom Harkin, a progressive Democrat and longtime friend of labor and civil rights, including disability rights. Harkin told reporters, “There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated.”

I hope against hope that I will never be one of those people in the shadows, that I will always, one way or another, be able to make my wishes known. 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.

Clearly, Congress’s Palm Sunday legislation was not the “broader type of proceeding” Harkin and I want. It does not define when and how federal court review will be available to all of those in the shadows, but rather provides a procedure for one case only. To create a general system of review, applicable whenever life-and-death decisions intersect with disability rights, will require a reasoned, informed debate unlike what we’ve had until now. It will take time. But in the Schiavo case, time is running out.