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.

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?

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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.

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