Bodies in Protest. Steve Kroll-Smith
illness support group for approximately ten months and conducted separate interviews with each of the four members who regularly attended the group. Each person was interviewed on several occasions, and a biography of his or her illness experience was constructed. Illness biographies were written in this fashion for twelve additional people with MCS who were not members of this support group.
To provide a rough check on the reliability of these illness biographies, we subscribed for two years to four nationally circulated newsletters distributed by organizations for the environmentally ill: Our Toxic Times, the Wary Canary, the New Reactor, and Delicate Balance. We searched these documents for personal accounts of the origins of the illness, its pathophysiology, and suggested treatment regimens. Comparing the newsletter accounts with our illness biographies, we found striking similarities in the interpretive strategies people use for understanding their bodies and environments. Next, we examined two biographies written by people with EI (Lawson 1993; Crumpler 1990) and again found considerable overlap in the types of explanations typically used to make sense of bodies unable to live in ordinary environments.
Reasonably confident that the patterns of theorizing MCS discovered in the initial interviews and confirmed in newsletter accounts and biographies were generalizable to the population of people who are chemically reactive, we obtained the membership directory of the Chemical Injury Information Network. While no list can be representative of the universe of the environmentally ill, this directory is the most exhaustive list we found, and perhaps the most exhaustive list in existence. It identifies people with MCS in every state of the Union and eleven foreign countries.
We constructed a simple, open-ended questionnaire designed to solicit information on how people experienced the illness and what specifically they thought about it. We mailed this questionnaire to seventy-five people listed in the membership directory. We also asked several newsletters to print a short notice announcing our study and directing people who were interested in participating to write or call. Between the seventy-five questionnaires mailed to directory addresses and the appeals in the newsletters, we obtained an additional 147 interviews. The quality of these interviews varied. Some people responded in short, curt sentences to each question, making it difficult to learn much from their answers. Responses to 42 interviews were too cursory to be of much help.
Other people wrote between ten and twenty pages—essays steeped in reflection and pain. Still others answered the questionnaire in five to ten pages. Narratives of this length were brimming with insights into how people organized their thoughts to apprehend their miseries. Through this technique we obtained 105 interviews. Combined with the 16 interviews we conducted during the first several months of work, we collected a total of 121 usable interviews.
In addition to the interviews, we searched Med File and other library databases for medical studies of MCS. We also purchased the Chemical Injury Information Network’s bibliography on toxic chemicals and human health, which contains 1,106 entries. These secondary materials were also treated as stories of the illness.
Finally, we took our emerging conclusions back to several of the environmentally ill to ask for their comments. While a few people did not see the political importance of this type of work, expressing some disappointment that it was not a forthright call for public support, others found our story personally affirming, validating their hard-fought claim to know something important about modern bodies and environments. We are pleased to report that no one with EI who commented on our story disagreed with it.
While it is the stories of the environmentally ill that interest us, we are ever mindful of the importance of these stories to the identities of the narrators. And we are also mindful of the importance of these stories to the success of this project. The real strengths of this book are not found in our abstract musings (though we hope some readers find them useful) but in the compositions of the environmentally ill, their often insightful and always revealing accounts. We were privileged to hear and read these stories and report them in this book.
Chapter 2 continues our discussion of MCS, practical epistemology, and social critique. It develops further the conflict between the environmentally ill and the medical profession, and places this conflict in a broader historical movement identified by Alain Touraine as the return of the Subject (1995).
2 Chemically Reactive Bodies, Knowledge, and Society
What will become of … thought itself when it is subjected to the pressure of sickness?
(Nietzsche 1987, 34)
MULTIPLE CHEMICAL SENSITIVITY, at its core, is a dispute over knowing. It is a dispute over what will count as rational explanations of the relationship of the human body to local environments. One stake in this struggle is the privilege to render an authoritative explanation of the body and its relationship to the environment by, in part, accessing and applying the language of biomedicine; while the outcome may not change the traditional organization of rational knowledge, it will at the very least suggest an alternative. Also at stake in this dispute are the cultural understandings of what are safe and what are dangerous places. If social order depends in part on tacit agreement among participants that the world is divided into places to avoid and places to inhabit, MCS portends a reordering.
At this moment the dispute is little more than a skirmish of words waged between outlying detachments of opposing forces. The chemically reactive on one side, armed with their somatic experiences, borrowed biomedical interpretations, and a profound determination, look across the “no-man’s-land” at the profession of biomedicine, armed with the authority of science and the state to control the definition of disease and pronounce bodies sick or well. Each side is supported by important confederates.
Siding with the chemically reactive are dozens of physicians who accept the idea of EI in spite of the resistance of their medical societies, several biomedical researchers who are working to document the physiological basis for the disorder, and an unknowable number of ordinary people who believe local environments can make people sick. Allied with the medical profession are such powerful groups as the Chemical Manufacturers Association, the Pharmaceutical Manufactures Association, and the health insurance industry.
The state’s interest in promoting the use of chemicals is not hard to figure out. Approximately 80 percent of the commodities in this country are manufactured through some type of industrial chemical process (Chemical Manufacturers Association 1994). Americans bought a record high $47 billion in tobacco products in 1995 and also a record $86 billion in prescription and nonprescription drugs (World Almanac 1997, 150). In 1995 the U.S. Department of Commerce reported export sales of chemicals for manufacturing and chemical commercial products in excess of $50 billion. Organic and inorganic compounds alone accounted for $21 billion, while cosmetics and plastics totaled almost $19 billion (World Almanac 1997, 241). Also in 1995, the U.S. produced 71.16 quadrillion Btu of energy (a quadrillion is 1 with fifteen zeros behind it). Of that number, 57.40 quadrillion Btu were produced by fossil fuels (World Almanac 1997, 235). Finally, over a million people work in the chemical industry, including 78,400 scientists and engineers. Women make up 30 percent of the work force (Chemical and Engineering News 1994, 29).
Assume for the moment that society determines the knowledge claims of the environmentally ill to be true. Assume people really do become sick from exposure to a seemingly endless array of chemicals found in ordinary environments. Assume the chemicals that cause illness are present in the environment at orders of magnitude lower than current regulatory levels. Moreover, assume that exposure to one chemical compound sensitizes the body to an array of unrelated chemical compounds. Finally, assume any body system is subject to the disease. If these assumptions are true, what is at stake is more than the public right to assign a rational explanation to a human trouble. At stake in the struggle to theorize a new relationship of the body to the environment is the vast process of chemical production, disability rights legislation, housing, commercial and public building construction codes, personal habits and codes of conduct, and local, state, and federal tolerance regulations, among other significant societal changes.
Consider the account of one environmentally ill woman who struggles