Bodies in Protest. Steve Kroll-Smith
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spores, or DDT. For them, a seemingly endless array of environments and common consumer items are considered serious health risks. The stocked shelves of grocery stores, drugstores, and hardware stores pose immediate health risks. Churches and synagogues harbor caustic agents that threaten to overwhelm the body. Schools might be toxic. Hospitals are potential danger zones, brimming with hazardous effluents. Even birthday presents might be brightly wrapped threats. It is as if modern material culture lies in wait to ambush the body of the environmentally ill. Writing almost two hundred years ago, Jean-Baptiste Lamarck anticipated MCS when he observed: “We die when we ingest too much of the environment” (quoted in Crumpler 1990, 13).
Multiple chemical sensitivity is the latest evolution in a series of environmental warnings and technological accidents to occur in the latter decades of the twentieth century. In Silent Spring (1962) Rachel Carson wrote ominously of the perils of DDT and its effects on the biosphere. In the 1970s, labor demanded that management clean up the workplace and fairly compensate the victims of factory and shop floor injuries. The discovery of dangerous chemicals under a residential community in Niagara Falls, New York, in the late 1970s changed forever the public’s perception of parks, schools, and neighborhoods as environmentally safe. Love Canal alerted the nation to environmental dangers that were no longer limited to nature or industrial workplaces; now they could be found in backyards, basements, and playgrounds.
The nuclear accident at Three Mile Island, Pennsylvania, in 1979 highlighted the risks of splitting atoms to boil water. Massive cooling towers shaped, unsettlingly, like mushroom clouds, became icons of fear and distrust. The untold casualties from the Chernobyl nuclear fire in the Ukrainian republic of the former Soviet Union in 1986 confirmed the doubts and suspicions of many regarding nuclear energy. In 1976 twenty-nine people died of exposure to contaminated mold they inhaled while staying at a grand old hotel in Philadelphia. What quickly became known as Legionnaires’ disease called attention to buildings as possible carriers of disease. The provocative phrase sick building syndrome soon entered popular conversation and increased further the number of potentially risky environments.
In the late 1980s and early 1990s EI emerged as a contentious health issue, exacerbated the debate over what are safe and dangerous environments, and provoked a political question: Who will control the definition of the human body and its relationship to the environment in the waning years of the twentieth century? This book examines this medical, social, and cultural conflict from the first-person accounts of the chemically reactive.
People with MCS narrate stories of their misfortune. They speak to themselves, to one another, and to those of us who do not dwell in their world of impairment. From our vantage point, EI begins with the simple idea that people who organize themselves around changes in their bodies are also organizing their minds to produce accounts of their miseries. Most of these accounts sound like biomedical theories of the body and its relationship to the environment. People who claim they are environmentally ill are theorizing the origins of their distress and its effects on the body, and are arguing for appropriate treatment strategies, using the complicated language of biomedicine. In this manner EI is a strategy for understanding a body that is becoming disorganized and unpredictable by providing it with a rational story to account for its untoward changes. Perhaps in theorizing its somatic distress, the self of the environmentally ill learns to live in a body that cannot live in putatively benign and safe places. Following the good advice of Susan DiGiacomo (1992), we will accord the voices of the sick people found in the pages of this book “an analytic status” (136).
This book is a story of bodies that no longer behave in a manner modern medicine can predict and control. It recounts the extraordinary efforts of people who inhabit those bodies to narrate plausible accounts of what went wrong. It is a story of ordinary people struggling to construct biomedical accounts of etiologies, pathophysiologies, and treatment regimens to explain and manage their debilitating physical and psychological symptoms. It is, in short, the story of a struggle to wrest control of medical discourse from medical science and challenge the cultural definition of the body and its relationship to modern environments.
Our interest is in both the processes of classification, abstraction, and cause-and-effect reasoning undertaken by laypersons who are organizing a way of thinking about the strange changes in their bodies, and the products of these processes, the ideas themselves. Specifically, how do people whose bodies rebel in the presence of extremely low levels of putatively benign consumer products and environments fashion accounts of their misery? And, simply, what kind of body is embedded in their accounts? How does the environmentally ill body differ from the conventional biomedical body? How are the environmentally ill using their homespun theories to effect changes in the conventional, agreed-upon boundaries between safe and dangerous spaces? Finally, and closely related to the issue of safe and dangerous, how are important institutional others (friends, physicians, bosses, governments, and so on) responding to these accounts of bodies that no longer work properly? In short, it is not MCS as a medical reality that is the subject of this work. Our focus, rather, is on MCS as a biomedical account of imperfections in built environments and their debilitating effects on the body constructed by ordinary people who are frustrated and disappointed in the profession of medicine.
Multiple chemical sensitivity is a medical conflict that throws into stark relief the recent work of Anthony Giddens (1990), Ulrich Beck (1992, 1995), Alain Touraine (1995), and other theorists of late modernity. It is almost as if the environmentally ill are self-consciously dramatizing the crises and changes proposed in their work, although we venture to guess that neither the chemically reactive nor the theorists have heard of one another. The correspondences between abstract theory on the one hand and concrete human activities on the other is rarely so direct and unmediated.
Late modernity is a world populated by expert systems, expert knowledge, and an increasing awareness among ordinary people that the world is an unpredictable and increasingly dangerous place (Giddens 1990; Beck 1992). Biomedicine is a good example of an expert system. It is a set of interrelated statuses and practices organized around scientific and technical ways of knowing that “systematically form the objects of which they speak” (Foucault 1973, 49). Theories of pathogenesis are confirmed by complex technologies designed to construct sick bodies and minds. Prescribed treatments are routinely founded on complex relationships between pharmacology and healing. It is physicians who enjoy exclusive access to this expert knowledge, and statutory authority gives their medical statements the power to create the objects of medicine.
Physicians, of course, are not interchangeable with ordinary persons. In the ideal world of the professions, “Medical statements cannot come from anybody” (Foucault 1973, 51). Ensuring that only licensed practitioners speak a language of expertise limits the use of expert knowledge to people whose identities and careers are linked closely to the interests of powerful elites. Thus, it is not surprising that expert knowledge is likely to be directed away from social criticism and toward regulating individuals. Medicine, in particular, locates individuals in the crosshairs of classificatory schemes and definitions that focus attention on their personal difficulties and shortcomings (Foucault 1973; see also Sontag 1989).
While states can use force to ensure compliance, most expert systems survive in part on the simple willingness of nonexperts to trust in their complicated and often mysterious powers (Giddens 1990). There are strong cultural pressures for people to follow the advice of their physicians, or at least not to resist receiving advice. People who narrate stories about bodies that are increasingly intolerant of ordinary places and things are routinely advised by their physicians to reduce the stress in their lives, or to medicate daily with allergy drugs, or to seek psychological or psychiatric help. The problem with this expert advice is, simply, that it doesn’t work. People remain sick or become even sicker when they follow their physicians’ recommendations.
Rather than rejecting biomedicine entirely, however, these people are appropriating the symbols of biomedicine—in effect, separating the physicians from their language and shifting the site of biomedical theorizing from hospitals, clinics, and offices to kitchen tables, living rooms, and patios. The sick people encountered in these pages are not abandoning expert knowledge but they are moving away from the expert system. They perceive the need for expertise at the same moment they have lost faith in the experts and their administrative worlds.
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