Choice and consequences

Reaction to the Globe's striking series on a girl with Down syndrome. Plus, bias on the right, and Andrew Sullivan crosses the line.

by Dan Kennedy

For most people, the circumstances won't be nearly so dramatic as those that confronted Tierney Temple-Fairchild and Greg Fairchild, the couple at the center of the Boston Globe series "Choosing Naia." But one day in the not-too-distant future, just about every expectant parent will have to make a choice of one kind or another. The Fairchilds chose to give birth to a girl with Down syndrome and a severe heart defect. With genetic screening becoming more comprehensive and precise with each passing year, the number of people who learn that their children will be different in some way is going to increase exponentially. What will their choices be?

It's that direct human connection that gives "Choosing Naia" its power. The six-part series ran on the front page from December 5 through 10, fighting for space and attention with the tragic Worcester fire. In "Choosing Naia," reporter Mitchell Zuckoff and photographer Suzanne Kreiter, who are married, succeeded in using one couple's story to illustrate a whole range of broader cultural issues -- not just the burgeoning field of genetics and the rights of the disabled, but also, by happy accident, race (Greg is black, Tierney is white), and the similarities and differences in how the white, able-bodied majority perceives members of minority groups and people with disabilities.

"It was so honest in terms of what the parents and their families went through," says Ruth Ricker, a former president of Little People of America, who is now affiliated with the International Network on Bioethics and Disability. "In the end, I think the series will do more for the disability-rights-in-genetics movement than what disability activists could do. People identify with this."

A personal note: my seven-year-old daughter, like Ricker, has achondroplasia, a genetic anomaly that is the most common form of dwarfism. I have moderated an Internet discussion group (known as a listserv) on dwarfism for several years. The looming possibility that expectant parents will one day be able to abort for a whole host of reasons -- not just Down syndrome or dwarfism, but even, depending on scientific discoveries, a proclivity toward obesity or homosexuality -- is a regular, and emotional, topic of online discussion. Ricker, who is feminist, liberal, and pro-choice, nevertheless invokes images of Hitler by using the word "eugenics" to describe such abortions.

Zuckoff, who is the Globe's national reporter, conceived of the series in early 1998, when he was working on the paper's Spotlight team; he'd had conversations with friends who were undergoing genetic tests and agonizing over what they should do. He knew he wanted to focus on Down syndrome for two reasons: it is common enough that most readers have a rough understanding of what it is; and though its effects are so serious that most women abort when they learn they're carrying a Down syndrome fetus (90 percent, according to studies), it does not preclude people with the disorder from leading happy, productive lives. In other words, Down syndrome is the ideal lens through which to view the ethical and moral dilemmas inherent in genetic screening. Zuckoff contacted some Down syndrome organizations and posted a message on a Down listserv. In August 1998, as the Fairchilds were still agonizing over what to do, a geneticist handed them a printout of Zuckoff's plea.

"They took a huge leap of faith and called me," Zuckoff says. And after a couple of preliminary meetings, they invited Zuckoff and Kreiter to listen and observe.

The Fairchilds' reaction to having the most intimate details of their lives published on the front page of the Globe appears to be mixed. Zuckoff says they're "taking it in stride," but adds they're relieved that they live in Hartford, where the Globe's circulation is limited. They declined to be interviewed by the Phoenix, although in brief conversations this week Tierney Temple-Fairchild and her mother, Joan Temple, made it clear that they are pleased by the series.

By this past Monday, Zuckoff says, he had already received more than 1000 e-mails, phone calls, and letters, which he estimates as running 50-to-one in favor of the series. The complaints, he adds, are mainly from those who think all fetuses with Down syndrome should be aborted, and from those who think abortion should never be a choice.

In fact, Zuckoff and Kreiter's work shows deep respect for the Fairchilds' right to choose either way. After all, deciding to give birth to a child who may cost society more than a non-disabled child is itself a profound choice -- and it's one not everyone is in a position to make. Ruth Ricker says it's crucial that prospective parents who receive an upsetting genetic diagnosis immediately receive information on genetic-support groups so that they can make informed decisions, and not be pressured into having an abortion. At the same time, as Planned Parenthood League of Massachusetts president Dianne Luby points out, those who do decide to abort must be guaranteed access to those services.

"This couple had information, they did a huge amount of research, they consulted with their doctors and their family, and they made a choice," says Luby of the Fairchilds. "They were extremely fortunate. There are some people who would not have these resources available to them."

At a time when the future of newspapers is in some doubt, strong narrative projects such as "Choosing Naia" point the way toward a revitalization of the craft. Granted, the fly-on-the-wall treatment doesn't always work; recall last year's much-mocked Globe series on an exceedingly ordinary single young woman.

But well-executed projects such as "Choosing Naia" and "The Lost Boy," a Boston Herald series on a teenage runaway published earlier this year, engage people -- and make them think -- in a way that even the best investigative reporting rarely does.

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Playing ideological games with heartbreaking tragedies is a risky business. For one thing, it's exploitation of the worst sort. For another, the point you make may not be the one you intended.

For the past several months, certain elements of the right have been carrying the banner of Jesse Dirkhising, a 13-year-old boy from Arkansas who, according to authorities, was killed by two men who had drugged, blindfolded, and raped him. The crime took place September 26. But it became a conservative cause on October 22, when the Reverend Sun Myung Moon's Washington Times put it on page one and introduced what has since become a familiar theme: that the contrasting coverage of Matthew Shepard's and Jesse Dirkhising's deaths betrays bias on the part of the pro-gay liberal media. Shepard, of course, was the gay college student from Colorado who was beaten and tied to a fence last year. His death, which came shortly after his rescue, sparked nationwide revulsion over homophobic violence. Jesse Dirkhising's death, the Times' efforts notwithstanding, has failed to penetrate the national consciousness.

Boston Globe columnist Jeff Jacoby's December 9 column, though late to the fray, at least had the minor virtue of being less offensive than some. He merely compared coverage of the Shepard and Dirkhising murders to argue against the "perniciousness" of hate-crime laws of the sort that would apply to Shepard's killers (who singled Shepard out because he was gay) but not Dirkhising's. By contrast, consider an odious December 5 piece in the Washington Times by Reed Irvine, head of the ultra-right Accuracy in Media. Though Irvine's ostensible purpose was to whack the liberal media, he was soon off and running with lines such as "Practicing sadistic sex and seducing young boys is not uncommon among homosexuals," and "Homosexuals are very influential in the newsrooms of the establishment media these days."

Yet on the very day that Jacoby's column appeared, the Globe ran a small article from the Associated Press, deep inside, on a guilty verdict in the murder of Private Barry Winchell, a gay soldier who last July was beaten to death with a baseball bat, in part because of his sexual orientation. The guilty verdict has since touched off a flurry of media follow-ups and a renewed assault on the "Don't Ask, Don't Tell" policy; but, until then, Winchell's murder had attracted about as much attention as that of Jesse Dirkhising. Lexis-Nexis searches on both cases turned up a few hundred clips, the overwhelming majority of which were Associated Press accounts and local-newspaper stories.

The truth is that some crimes become national news and others, despite striking similarities, are ignored. Why did Matthew Shepard become a universal symbol of the dangers faced by gay men, while Barry Winchell was ignored until recently? Why has Jesse Dirkhising gotten so little attention from the mainstream media, when two years ago Cambridge's Jeffrey Curley -- also murdered by two male sexual sadists -- generated worldwide coverage?

Maybe it has to do with the atmospherics surrounding each case. Shepard was an attractive college student whose killers left him to die as if he were being crucified, Christ-like; Winchell was a working-class soldier. Jeffrey Curley was three years younger than Jesse Dirkhising, and his case included such factors as unimaginably gruesome details involving necrophilia and a vocal, outraged father demanding the reinstatement of the death penalty.

Conservatives are just plain wrong when they claim that differences in the way Matthew Shepard's and Jesse Dirkhising's murders were covered reflect conscious, pro-gay bias on the part of the mainstream media. That assertion is directly contradicted by the cases of Barry Winchell and Jeffrey Curley, which demonstrate that it is not the media but, rather, their critics on the right whose view is clouded by ideological blinders.

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A cardinal if unspoken rule of journalism is that you don't out people who are known or suspected to be gay or lesbian unless they have outed themselves. The gay author and essayist Andrew Sullivan wrote a terrific column in this past Sunday's New York Times Magazine on celebrities of uncertain sexual orientation who play with their image yet don't quite dare come out. But in two egregious instances, Sullivan crossed the line.

No, I'm not talking about former New York mayor Ed Koch, whom Sullivan labeled as a "Kinda Ask, Sorta Tell" guy who recently hinted to New York magazine that rumors of his homosexuality may well be true. Koch, in Tuesday's New York Post, compared Sullivan to "a Jew-catcher of Nazi Germany," but that comment was about as serious as his mayoralty. Nor am I talking about Sullivan's invocation of Gore campaign manager Donna Brazile, comedian Rosie O'Donnell, singer Ricky Martin, and space alien Richard Simmons, none of whom have come out, but all of whom have playfully referred to their sexuality in a nod-nod-wink-wink sort of way.

I'm talking about Attorney General Janet Reno and Health and Human Services secretary Donna Shalala, of whom Sullivan wrote that "their orientations are shrouded in deep ambiguity." Hold on. Though it's true that there have been whispers about Reno and Shalala for many years, it's also true that neither has ever publicly discussed her sexuality. In other words, it's nobody's damn business.

Sullivan has come up with an original take on old barriers that persist in an era when those barriers aren't supposed to matter anymore. Unfortunately, they do still matter to some people, and Sullivan should have respected those who conduct their lives as though those barriers still exist.

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Dan Kennedy's work can be accessed from his Web site: http://www.shore.net/~dkennedy

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Dan Kennedy can be reached at dkennedy[a]phx.com

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Articles from July 24, 1997 & before can be accessed here

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