Last Wednesday, civil and disability rights attorney Harriet McBryde Johnson died in her sleep. Johnson, who suffered from a congenital neuromuscular disease, authored the 2005 memoir Too Late To Die Young.In a 2005 “Hey, Wait a Minute” column, she argued on behalf of federal intervention in the Terri Schiavo case. The article is reprinted below.
The Terri Schiavo case is hard to write about, hard to think about. Those films are hard to look at. I see that face, maybe smiling, maybe not, and I am reminded of a young woman I knew as a child, lying on a couch, brain-damaged, apparently unresponsive, and deeply beloved—freakishly perhaps but genuinely so—living proof of one family’s no-matter-what commitment. I watch nourishment flowing into a slim tube that runs through a neat, round, surgically created orifice in Ms. Schiavo’s abdomen, and I’m almost envious. What effortless intake! 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. That’s a scary thought. If I couldn’t speak for myself, would I want to die? If I become uncommunicative, a passive object of other people’s care, should I hope my brain goes soft and leaves me in peace?
My emotional response is powerful, but at bottom it’s not important. It’s no more important than anyone else’s, not what matters. The things that ought to matter have become obscured in our communal clash of gut reactions. Here are 10 of them:
1. Ms. Schiavo is not terminally ill. She has lived in her current condition for 15 years. This is not about end-of-life decision-making. The question is whether she should be killed by starvation and dehydration.
2. Ms. Schiavo is not dependent on life support. Her lungs, kidneys, heart, and digestive systems work fine. Just as she uses a wheelchair for mobility, she uses a tube for eating and drinking. Feeding Ms. Schiavo is not difficult, painful, or in any way heroic. Feeding tubes are a very simple piece of adaptive equipment, and the fact that Ms. Schiavo eats through a tube should have nothing to do with whether she should live or die.
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.
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.
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.