Chapters 3 through 5 use narratives of the environmentally ill to describe in vivid detail the problems of living with a contested disease that challenges not only the biomedical definition of the body but commonsense thinking about the relationship of bodies to environments. In these chapters we encounter the work people do to make their obscure bodies intelligible by locating them in theories of etiology and pathophysiology that lead often to effective treatment strategies. Following Geertz’s pragmatic idea, we refer to these local theories as practical epistemologies (1983, 151).
Chapters 6 and 7 shift attention from a phenomenological account of MCS to a consideration of its political and economic effects. Introducing the idea of representation, we look closely at those arenas of social and cultural life that are changing to accommodate and, in turn, recognize the chemically reactive body. To the extent institutional others are modifying routines or policies, passing legislation, or creating commodities to assist the environmentally ill body, MCS is becoming a disease in spite of the medical profession’s current refusal to acknowledge it. In the final chapter we suggest that the amount of interpretive space created by problems with bodies and environments is growing. By interpretive space we mean simply the room available for theorizing. When citizens or laypersons step into this space, they appropriate the languages of expertise and join them to subjective, personal experiences to create an alternative rationality, at once a local and an abstract knowledge. A discussion of popular epidemiology suggests it is not only the individual body and environments that are opening up space for interpretation. Populations of bodies in the form of neighborhoods, communities, and so on are collectively proposing citizen theories of disease clusters and contamination.
Multiple chemical sensitivity and popular epidemiology are among a number of citizen science movements that are hinting at the emergence of a new history—not one they are making by themselves but one whose making they both illustrate and contribute to. This new history is neither modern nor postmodern. Modernity rested on a simple two-step formula: surrender the sovereignty of the personal, local, and subjective, and embrace the promises of abstract, rational knowledge administered by experts. Modernity offered little space for first-person stories. While they can entertain and are of some importance to social relationships or the occasional news stories—indeed, they are called “human-interest stories” in newspaper jargon—they could not be the basis for administrative decisions, legislation, or policy making. Postmodernity, it would seem, emerged to counter the formula for modernity by creating a privileged space for the personal narrative. In this society, self-stories displace expertise, which is shown to be just another self-story anyway, wrapped up in fancy language.
The environmentally ill and their counterparts in other citizen medicine movements are neither modern nor postmodern. They do not surrender their self-stories to the administration of medical expertise, as good moderns do; nor do they abandon this expertise to revel in the pure subjectivity of their stories, as good postmoderns do. Rather, they join the self-story to expertise, constructing narratives of their sick bodies using the complicated languages of biomedicine. In this fashion, MCS is a critique of both modernity and postmodernity and an invitation to revisit these important ideas as we think about the history we are making.
We wrote this book, in part, to make the environmentally ill more comprehensible than they now are—to make the “other,” we might say, familiar. We invite the reader to enter their world, stay a while, and recognize the possibility that our species survives in part by its irrepressible drive to understand the significance of things, though agreement on what is or what is not significant often eludes us.
1 Environmental Illness as a Practical Epistemology and a Source of Professional Confusion
“Listen to the patient, he will tell you the source of his disease. Listen more closely and he will likely tell you how to cure him.” I heard something like that once in medical school.
(The first author’s family physician)
THE CONFUSING NATURE of MCS is reflected in the number of terms enlisted to describe it: environmental illness, chemical sensitivity, cerebral allergy, chemically induced immune dysregulation, total allergy syndrome, universal reactor syndrome, ecologic illness, chemical hypersensitivity syndrome, universal allergy, and, more alarming, chemical AIDS and twentieth-century disease. To simplify discussion we will use the terms multiple chemical sensitivity, or MCS, and environmental illness, or EI, to refer to the disease and the terms chemically reactive and environmentally ill to refer to the people living with the disease.
While the terms describing this medical condition vary, they converge on a number of common premises that together describe a nascent theory of the body and its relationships to the materials of modern life: office buildings, houses, shopping malls, yards and gardens, common consumer products, and so on. Importantly, what medical science knows about the etiology, pathophysiology, and treatment of EI is derived from the stories the environmentally ill tell about their bodies. Stories are all we have at the moment because there are no agreed-upon criteria for defining EI as an official medical condition and, consequently, there is no consensus regarding appropriate diagnostic protocols or treatment regimens (Ashford and Miller 1991; Bascom 1989). On the second page of their recent collaborative report, the U.S. Department of Health and the Agency for Toxic Substances and Disease Registry (ATSDR) reported that the natural history of EI describes “diverse pathogenic mechanisms … but experimental models for testing them have not been established (Mitchell 1995, 2).
Thus, medical researchers and physicians who accept the possibility that MCS may be a legitimate physical disorder must listen closely to their patients’ efforts to explain what is wrong with their bodies. Attending to the stories of people in pain recalls the typical eighteenth-century dialogue between patient and doctor, which typically began with the question “What is wrong with you?” Today, however, as most of us know, a physician is more likely to ask “Where does it hurt?” reflecting her greater faith in sophisticated technology than in the commonsense reasoning of her patients (Foucault 1973, xviii).
But the symbols of medical technology are silent on the issue of EI. It is, rather, the phenomenology of MCS, the experiences and accounts of those living with the malady that are the primary source of knowledge about this nascent physical disorder.1 A remarkable feature of the accounts collected for this book are their similarities, in spite of the fact that with a few exceptions the people interviewed do not know one another. Interviews with plumbers, accountants, pharmacists, postal workers, homemakers, marine captains, insurance salespeople, sugarcane workers, college professors, and others from all fifty states, with little more in common than that they all happen to be alive at the same time, consistently reveal common patterns. Discrete people, without recruitment ideologies typical of social movements, are thinking about their troubles in an essentially similar manner.
One explanation for this uncoordinated convergence in the style and product of thinking about illness is the possibility that common changes in people’s bodies are shaping common thought processes. Other, arguably less sympathetic, accounts of this unorganized collective pattern are found in several academic discussions of the MCS phenomenon, including arguments that it is a form of hysterical contagion (Brodsky 1984) or chemophobia (Brown and Lees-Haley 1992). Complementing these psychosocial constructions is the unsettling idea that MCS is a pandemic outbreak of one of a number of faulty thinking disorders, including conditioned responses, symptom amplification, or displacement/avoidance activities (Simon 1995, 45; Simon, Katon, and Sparks 1990; Terr 1987).
The environmentally ill talk about a polysymptomatic disorder that starts with an acute or chronic exposure to chemical agents. Many of these agents are found in ordinary household and work environments in amounts well below recognized thresholds for