Why Congress was right to stick up for Terri Schiavo.

Previously published Slate articles made new.
June 9 2008 1:01 PM

Harriet McBryde Johnson, RIP

The disability rights lawyer's take on the rights of terminally ill patients.

(Continued from Page 1)

6. Ms. Schiavo, like all people, incapacitated or not, has a federal constitutional right not to be deprived of her life without due process of law.

7. In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

Advertisement

8. In other contexts, federal courts are available to make sure state courts respect federally protected rights. This review is critical not only to the parties directly involved, but to the integrity of our legal system. Although review will very often be a futile last-ditch effort—as with most death-penalty habeas petitions—federalism requires that the federal government, not the states, have the last word. When the issue is the scope of a guardian's authority, it is necessary to allow other people, in this case other family members, standing to file a legal challenge.

9. 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.

10. 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.

Harriet McBryde Johnson was a disability rights lawyer in Charleston, S.C. Her memoir in stories is Too Late to Die Young: Nearly True Tales From a Life.