Who Lives? Who Dies? Who Decides?; Signs of Bias | Media | Chicago Reader

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Who Lives? Who Dies? Who Decides?; Signs of Bias

In the midst of the Terri Schiavo debate, disability-rights activists look for clarity.



Who Lives? Who Dies? Who Decides?

"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 ethical standards that 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."

Signs of Bias

Last week a photograph I would normally have zero interest in was e-mailed to me: a view of the front yard of Steve Huntley's house on a corner in Wilmette.

Huntley's the editor of the editorial pages of the Sun-Times, and the photograph was sent by Wilmette partisans who were furious at him. A school board race has passions running high in the suburb, and Huntley's pages sided with the insurgents.

There've been no Sun-Times editorials on the upcoming District 39 election on April 5, and no articles either. But on March 21 occasional op-ed columnist Mary Laney wrote about "angry and frustrated" Wilmette parents who'd formed Citizens for Blue Ribbon Schools to take on the powers that be. These parents told her that test scores have been slipping since 2000, and they complained about the reading and math programs. Laney sympathized. Her column told of a time when she'd been unable to help her own son with his sixth-grade math because she didn't understand it; recalling this "iconoclastic moment," as she put it, filled her with "compassion" for the Blue Ribbon parents.

Laney's column was full of numbers. Superintendent of schools Max McGee promptly wrote Huntley a five-page letter arguing that most of them were misleading or wrong. Laney had blasted the District 39 leadership in a column last August, and McGee replied then too. McGee says the earlier letter never ran and that Huntley told him the new one was too long to consider.

What does this have to do with Huntley's yard? Partisans of the District 39 incumbents reasoned like this: The Sun-Times publishes Laney at Huntley's pleasure, and therefore she'd been writing what he wanted her to write. And his bias was clear--on his lawn stood two posters supporting the Blue Ribbon slate.

Photos of the Huntley lawn swept Wilmette by e-mail, accompanied by a note from incumbent board member Judy Schnecke. She called Laney's latest column "her second hit piece" and commented, "For an editorial page editor to pay a freelance writer, not once but twice, to produce a piece of fiction not supported by any facts, so close to an election, and clearly try to influence the outcome of the election, crosses an ethical line. If this is the kind of activity in which these candidates will engage in order to win the election, what might they do to our schools if they actually get elected?"

Schnecke's allies wrote Sun-Times editor John Barron denouncing Laney's column. Someone who described himself as a 1940s graduate of the University of Missouri journalism school--"where journalism ethics was taught with passion"--called the column "despicable and totally one-sided," and added, "Here comes the 'clincher': Your readers deserve to know that [Huntley] has posted campaign signs for Laney's cohorts...on his front lawn." Another Wilmette resident wrote Barron--and publisher John Cruickshank--wondering, "Do the Huntleys have any contact or relationship with the Blue Ribbon Committee? Of course, this all has to be coincidence."

When Schnecke's note reached Laney, she e-mailed back: "I have never been asked to write anything by anyone at the Sun-Times, nor anyone affiliated with anyone at the Sun-Times. For you to send a letter accusing me of being a paid 'hit piece' writer is pure libel. You should send an email to each and every person you sent your initial smear to correcting your dangerous assumptions."

Laney's bravado notwithstanding, the signs promptly disappeared from Huntley's lawn. And Huntley told McGee that if he resubmitted a shorter rebuttal, the Sun-Times would publish it. McGee did, and on March 24 the Sun-Times did.

I wondered why those signs had gone up in the first place.

"My wife posted the signs," Huntley explained. "For the years when I was metro editor and in charge of news coverage of the Chicago area, she never involved herself in anything political. Once I got into the opinion business and was no longer responsible in any way for news coverage, my wife--very much her own person with her own interests in the world--and I decided that she now had a right to express her own opinions as well. She took the signs down when she saw they had become an issue for me."

Linda Huntley may have been expressing her personal opinion, but it's their lawn. And Huntley's wrong if he thinks he has no responsibility for news coverage. An op-ed column that's a paper's first and last word on a subject is de facto news as well as opinion.

Art accompanying story in printed newspaper (not available in this archive): photos/Getty IMages, Yvette Marie Dostatni.

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