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 Who Lives? Who Dies? Who Decides? In the midst of the Terri Schiavo debate, disability-rights activists look for clarity. “Have you ever heard of one instance where someone has left instructions asking to be kept alive artificially?" asked AP sports columnist Jim Litke rhetorically during last's Friday's edition of WTTW's Chicago Tonight: The Week in Review. Litke certainly hadn't. "If you don't have a living will," he reasoned, "you almost have an implied living will." No one on the show argued with him. And when moderator Joel Weisman summed up he reflected, "The bottom line is, some good will probably come out of this. Everyone is going to try at least to be conscious of the fact that they need a living will and instructions in writing so you don't end up [as] in this particular case." Make your wishes known. That's the lesson all sides of the polarized Terri Schiavo debate seem to agree on. The day before Chicago Tonight aired, John Kass published a harsh column about the people "who want her dead." He said, "Let's not cheapen this by avoiding what is happening to Terri Schiavo. Let's use a real word . . . a word of consequence, a word with some real blood to it: Murder." Yet one paragraph earlier Kass had admitted, "I wouldn't want to live that way. And I'm writing something down to inform my wife that if I am ever like that, they should let me die. But there was nothing in writing for Terri. And her parents want to care for her. Still, she's being killed." So it was murder to take out Schiavo's feeding tube but would merely be letting him die to take out Kass's -- unless that piece of paper he'd written instructions on somehow got lost, in which case we'd be back to murder. I e-mailed him. I asked, "Whatever happened to the Golden Rule?" He didn't answer. One reason the Terri Schiavo debate has raged so fiercely is that it's offered lots of opportunities to score points -- to denounce, as Kass did, the "clerks and sophists who can prove almost anything with their fine arguments" or, as Maureen Dowd did in the New York Times, manipulative hypocrites like Tom DeLay, who "has voted to slash Medicaid by $15 billion, denying money to care for poor people in nursing homes, some on feeding tubes." A more important reason for the debate is that the issue deserves it. Kass is no hypocrite. He's had a problem thinking consistent thoughts about Terri Schiavo, but so has everybody else. People who have had to make an end-of-life decision about someone they loved testify that principles collide, certainty vanishes, and the pain is everlasting. The ones who chose a swift over a slow and agonizing death don't enjoy being called murderers. Yet Kass noticed that although the courts decided to allow Schiavo to die, she hadn't been dying beforehand -- she'd simply been depending on others for nourishment, as a baby or invalid does. Kass connected the dots between the helplessness of Schiavo and the helplessness of an unborn child. Rhetoricians on both sides of the debate are sensitive to this facile but usable analogy. Until very late in the reporting, little attention was paid to a group that occupies a middle ground. Disability rights activists -- to paint with broad strokes -- despise Tom DeLay, have no use for the religious right, and are more likely than not to be pro-choice. These activists draw their conclusions from one central premise -- that Americans of goodwill are more willing to allow disabled people to die. Harriet McBryde Johnson, an attorney with a congenital neuromuscular disease that makes it difficult for her to swallow, wrote in Slate that she knows there's a feeding tube in her own future, and she has no idea whether, if and when she becomes a speechless and "passive object of other people's care," she will want to die. She went on, "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." The distinction most of us would make between a disabled wife and a wife in a persistent vegetative state isn't as clear to disabled activists, whose definition of "disabled" is expansive. Steve Drake, who was born hydrocephalic, is a leader of the Chicago group Not Dead Yet. I asked him if he would want to live as a vegetable. "This is a decision point I was lucky enough to pass by when I was born," he replied. "The doctor pronounced me a vegetable. And when they use that word, you know what they're going to say next. Fortunately, my parents didn't like the term." Then he answered the question, and it turned out he's applying the Golden Rule to Schiavo. "I would want to be kept alive," he said. "I'd want first of all for everybody to be making sure that every effort was taken for rehabilitation and to see if I can communicate." Activists like Drake sense that the world is somewhat impatient for them to die, and he's given a trusted friend power of attorney, with instructions to resist. Not beyond reason -- Drake, like most of us, prefers to die swiftly and sedated if the alternative is slowly and in misery. But he doesn't intend to be written off just because he's lost some significant portion of his mind. "I realize this is unusual, but losing a lot of my intellectual ability isn't quite the nightmare it is in some other people," he said. "I've spent too much of my life around people with mental retardation to be too bothered by it." The legal proceduralism that led to Schiavo's feeding tube being removed leaves him cold. He has no more faith in the courts than an innocent man on death row who's been told he's exhausted his appeals and it's time for him to respect the law and say his prayers. "That's what I bring up whenever anybody tells me how much faith we should have in the judicial system," Drake said. "I say, 'I don't know how anybody in Illinois could say that with a straight face.'" He told me that listening to DeLay and Dennis Hastert go on about Terri Schiavo was "awful." But he admires Tom Harkin, the Iowa Democrat who's long been a champion of disability rights. Harkin supported the Republican legislation that passed Congress March 21 allowing the federal courts to intercede. "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability," Harkin explained, "and many times there is no one to speak for them, and it is hard to imagine what their wishes really are or were. So I think there ought to be a broader type of a proceeding." Proceeding? Does either Harkin or Drake actually think the courts or the Congress needs to be represented when grieving children decide whether to prolong the lives of terminally ill and pain-wracked parents? What Drake, at least, would like to see is simply a commission -- on which the disabled have a seat -- that would codify a set of conservervative ethical standards restraining hospitals, whose bias, he believes, is to persuade tormented families to pull the plug. "If you look at the rhetoric around so-called end-of-life issues," he says, "the error talked about is only in one direction. Bioethicists say, 'We don't want to extend the dying process into this long, awful nightmare.' That's legitimate. But in your eagerness to do that you start creating another type of error, especially given the traditionally negative attitudes of people in the medical community to people with disabilities of all kinds." |
