The Culture of Fear (27 page)

Fears feed off of one another. Speculation that Gulf War Syndrome resulted from veterans’ exposure to assorted chemicals helped those who monger scares about multiple chemical sensitivity (MCS), a metaphoric illness that has received plenty of favorable, anecdote-dependent coverage in its own right. A half-page article in the
Los Angeles Times
in 1996, for instance, presented a man named Alan Bell, another victim-cum-expert who founded his own foundation “directed to research and raising public awareness.” A mild-mannered attorney and loving father in excellent health before his “life as he knew it came to a crashing halt,” Bell succumbed to exposure to sprays and pesticides when his home was being remodeled, according to the reporter, Michael Haederle. For the past several years, Haederle reported, Bell followed a macrobiotic diet, seldom left his home, and wore only cotton clothing that has been washed in baking soda, vinegar, and powdered milk.
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The article about Bell, eulogistically headlined “He Fights So Your Next Breath Won’t Make You Sick,” was one of several unquestioning pieces in the major media about MCS. An Associated Press story in 1995 spotlighted Peggy Magidson, an MCS sufferer who abandoned her career and friends to live out in the woods. “I used to be a fashionable executive lady with designer dresses and high heels,” the story quoted Magidson saying, whose faded flannel shirt and dungarees were stained, the reporter said, from having been washed in a brew of baking soda, vinegar, and bleach. The writer went on to present the scary (if absurd) statistic that MCS afflicts anywhere from 15 to 33 percent of the population: people who, like Magidson, become violently ill at the smell of perfumes, pesticides, household cleansers, and innumerable other common chemicals.
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Some of the coverage of MCS was generated by alliances between activists and businesses trying to make a buck off the metaphorical ailment. When Debra Lynn Dadd, an MCS activist, published a book of recommendations on how to stay clear of dangerous household products, the maker of Bon Ami, a “chemical free” cleanser, contacted her. They sent Dadd on a media tour in which she promoted her booklet as well as Bon Ami. Dadd’s and Bon Ami’s efforts were reported on favorably, in turn, in
Sierra,
a publication of the environmental organization.
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Taking victims’ accounts almost at face value, few of the feature stories I located about MCS bothered to mention the many medical studies documenting that people said to have MCS actually suffer from common conditions such as eczema, asthma, and depression, and that some are merely possessed of an unusually sensitive sense of smell. Articles that did take note of medical knowledge about MCS often treated medical scientists as just another group with an opinion or perspective. “It’s an allergy-like condition generally regarded by the mainstream medical establishment with skepticism, though more people are reporting MCS symptoms all the time,” wrote a
Washington Post
reporter in an article in 1994 about a ban on perfumes and colognes at the University of Minnesota.
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Journalists were not alone in downplaying evidence from medical science in favor of anecdotes from MCS sufferers. Some of my colleagues in the social sciences adopted the same position. People such as Magidson and Bell are harbingers of “society’s next national health problem,” predicted Steve Kroll-Smith and Anthony Ladd in the academic journal
Sociological Spectrum.
The reports of MCS sufferers should be taken very seriously, these sociologists argued, irrespective of the conclusions of medical authorities.
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And
why
should we embrace the reports of the metaphorically ill? Because, as Linda and Bill Bovie, advocates for both MCS and Gulf War Syndrome, put it in an op-ed in the
Cleveland Plain Dealer:
“The accounts these individuals give of how their illnesses developed all seem to have a remarkable consistency. Most of them sound as though they were perfectly normal, average people who had never given a thought
to the possibility of chemicals jeopardizing their health before becoming acutely ill from a close encounter with some toxic substance.”
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Much the same can be said, of course, about many religious fundamentalists and smokers’ rights enthusiasts—or, for that matter, people who claim they were abducted by space aliens. They are usually sincere and ordinary folks, and their accounts often have a great deal of consistency. Yet when have fundamentalist Christians been taken seriously by journalists or sociologists in their contention that AIDS is God’s punishment for homosexuality, or anecdotes from smokers’ rights groups about chain-smoking octogenarians accepted over scientific evidence about tobacco and lung cancer?

Parallel reports from large numbers of ordinary people do not necessarily add up to truth. People often tell similar stories that are not accurate depictions of reality, as any anthropologist or police officer can testify. Like novelists and playwrights, regular folks adopt common images, plot lines, and themes—elements of what literary critics call
intertextuality—
in telling stories about themselves. “We need not assume that patients are either describing an organic disorder or else lying when they present similar narratives of symptoms,” notes Elaine Showalter. “Instead, patients learn about diseases from the media, unconsciously develop the symptoms, and then attract media attention in an endless cycle.”
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What keeps the cycle going—what tantalizes journalists, academics, and others about stories from the metaphorically ill and distinguishes them from others with improbable theories—is the critiques they afford of major social institutions. We have begun to see that each metaphoric illness serves as evidence of deficiencies in a particular institution: Gulf War Syndrome and the military, MCS and the consumer products industry. In an article about MCS in the journal
Feminism and Psychology,
Pamela Reed Gibson of James Madison University posits that we live in “a chemical culture” that seeks “to neutralize the message of the person with MCS ... i.e., that the environment is unsafe.” According to Steve Kroll-Smith of the University of New Orleans and H. Hugh Floyd of Samford University in their book,
Bodies in Protest,
MCS patients are “people whose bodies rebel in the
presence of extremely low levels of putatively benign consumer products and environments.”
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Gulf War Syndrome and MCS raise questions as well about a common institution: medicine. Kroll-Smith and Ladd proclaim in their journal article that by “not responding to biomedicine’s use of invasive treatments,” MCS patients represent “a serious challenge to the legitimacy of institutionalized medicine.” Internists and allergists are not equipped to understand an illness caused by chemicals in the environment rather than by traditional pathogens such as bacteria or viruses, the sociologists go on to assert. Patients and advocates of Gulf War Syndrome make similar claims, even though for both GWS and MCS, much knowledge has been gained by researchers from the medical disciplines most intensely criticized.
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The most sustained and influential critique of medical science has come, however, from sufferers of another variety of metaphoric illness: breast implant disorders. “We are the evidence. The study is us sitting here,” a woman in the audience yelled out during an Oprah Winfrey Show in 1995, upbraiding the CEO of Dow Corning, the leading manufacturer of silicone breast implants, for daring to suggest that studies from the Mayo Clinic, Harvard, University of Michigan, and elsewhere should be taken seriously. These studies found no evidence that implants had caused diseases in women who used them, but in many quarters scientific evidence could scarcely get a hearing amid the cries of implant victims.
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Emotional accounts being the stuff of TV talk shows, it is probably unreasonable to expect medical expertise to prevail in these forums. The clamor over breast implants raises profound questions, however, about whose voices, and which kinds of knowledge, are heard in fear-driven public policy debates. One of the greatest triumphs of anecdotes over science occurred at a federal regulatory agency whose express mission is to enact policies on the basis of scientific data. In 1992, when the U.S. Food and Drug Administration banned the use of silicone implants
except for breast cancer patients willing to participate in research studies, the agency’s leaders made their decision not primarily in response to findings from medical science (the American Medical Association denounced the ban). Rather, the FDA banned implants in the wake of congressional hearings and TV talk shows where implanted women spoke poignantly of a variety of ailments from chronic fatigue to rheumatoid arthritis to cancer, all attributed to their implants.
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Although at the time of the ban the FDA issued alarmist projections that 75,000 women would develop major health problems as a result of their implants, epidemiological studies have documented quite the opposite: women with implants have come down with illnesses at about the same rates as women without implants. The issue, like many in science, is not entirely resolved. Another major epidemiological study—this time focused on atypical diseases—is due out in 1999. It is important to bear in mind that with a million women with silicone implants, hundreds of thousands will become ill by chance alone. The general public can be excused for failing to appreciate this fact. Whenever another major scientific study came out refuting the claim that implants made women ill, anti-implant activists made sure we knew that “many women with implants don’t find the new study reassuring,” as reporter Joanne Silberner indicated on National Public Radio in 1996, following the release of a Harvard study of 23,000 women.
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Regardless of how large the study or how impressive the findings, reporters consistently offset the numbers with anecdotal statistics. In the words of ABC News correspondent Cokie Roberts on “Nightline” in 1995, “There are the thousands upon thousands of women who have breast implants and complain of terrible pain. Can they all be wrong?” Some social scientists also elevated first-person reports over scientific expertise. The sociologist Susan Zimmermann, author of Silicone
Survivors
, a book published in 1998, complains that “the medical community relies on research such as the Mayo Clinic study instead of trusting their patients’ accounts of their symptoms.”
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For Zimmermann and other feminists who have spoken out against them, implants represent the literal embodiment of male oppression.
After all, the critics point out, prior to the FDA ban four out of five implant operations were for cosmetic purposes. (Read: in the service of male fantasies.) And when implanted women became ill, physicians—almost always males—dismissed them. “We have been down this road before,” wrote Jennifer Washburn in
Ms.
“Women in real pain going to doctors and being told that it is all in their heads. Women being encouraged to use medical devices that don’t function properly and being told these devices are perfectly safe when they aren’t.”
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But lurking behind debatable analogies to the Dalkon Shield and legitimate concerns about taking women’s reports seriously lay more than a little inconsistency. If listening to women about breast implants is important, why not listen to informed women such as Marcia Angell, a feminist physician and executive editor of the
New England,journal ofMedicine?
Alternately ignored and denounced by implant activists, Angell eventually acknowledged how much it hurt her personally to be told, “this is a women’s issue and if you don’t believe that breast implants cause connective tissue disease you are therefore anti-feminist or anti-women.”
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Rather than condemning Angell, feminists might reasonably have been expected to praise her for standing up for women. In 1992 after the FDA ban Angell accused the agency’s director of “treating women like little girls.” Echoing the position taken by the National Council of Breast Cancer Organizations and by Y-ME, the leading support group for breast cancer patients, Angell argued that by removing implants from the market the FDA had declared, in effect, that women are unable to weigh the costs and benefits and make a rational decision.
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Nor was Angell the only knowledgeable feminist shunned for her skepticism about implant illnesses. Elinor Brecher, a feature writer with the
Miami Herald,
took both a professional and personal interest in the controversy, having received implants herself following a double mastectomy in 1985. Not trusting her own experiences as representative (Brecher reported that her implants did not cause her problems), she surveyed friends, none of whom said they had had more than minor problems with their implants, and she called officials at cancer clinics around the country, from whom she learned that follow-up studies of implant patients had recorded few problems.

Brecher readily acknowledges, as does Angell, that breast implants can produce considerable pain and disfigurement by causing capsular contracture (hardening of the breast tissue), but no matter where she checked—Brecher also interviewed physicians from an assortment of specialities—could she find support for the claim that implants cause serious or systemic disease. In a series of articles in the
Herald
in the early 1990s she reported the encouraging findings of her investigative journalism, but her well-researched and persuasive pieces were neither picked up by the national press nor did reporters at other publications follow her lead and conduct their own investigations. The reason, Brecher suspects, is simple. “The better story, the sexier story, was the one about women being disfigured by horrible diseases caused by greedy plastic surgeons,” she told me. That story created, though, considerable fear and suffering in women with implants. “Women called me up scared to death. It broke my heart. ‘These things are ticking time bombs in my chest. Please give me the name of a doctor to get them ripped out’,” Brecher paraphrased a panicked caller.
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