debate, however, that is motivating the environmentally ill. A person who confiscates the privilege of physicians to explain bodies in relationship to environments is thinking about something more elemental than an epistemological dispute, to wit, simple survival. “We are always searching for ways of explaining to others what we have,” acknowledges a woman with MCS, “and I guess … to explain to ourselves too.” An engineer with a long history of the disorder recalls that “at first it was a search for a vocabulary that could express what I, or I guess my body, was going through. Crazy-sounding words like ‘toxic toys’ and ‘VOC reactivity’ became a standard way of talking for me; and still is.” The efforts of the environmentally ill to find the words necessary to apprehend their misery constitute one part of this study; the specific ways they use these words to alter the social landscape and change their life circumstances constitute the other.
The environmentally sick use their theories of the body and environment to ask others to understand their misery, alter their behaviors, allocate time and money, and, generally, change the world to accommodate their illness. Specifically, rational theories of chemical reactivity become rhetorical idioms for assigning moral significance to previously amoral behaviors or habits and traditionally inconsequential environments and consumer products. When a chemically reactive husband requests that his wife of twenty years refrain from using her usual dry skin lotion, she will probably ask him why. If we listen to his reply, we are likely to hear a biomedical explanation of the effects of such chemicals as butylene glycol or phenoxyethanol on his immune system or his central nervous system. Whatever the particularities of his response, he is likely to make a causal link between chemicals in the lotion and his somatic troubles. In this fashion, what he knows about his illness becomes a lingual resource for both managing his somatic distress and critiquing behaviors, products, and environments that are routinely defined as appropriate, safe, and benign.
In theorizing the origins, pathophysiology, and effective management of their illness, the environmentally ill understand why their symptoms intensify and subside in accordance with the presence or absence of mundane consumer items and the personal habits and practices of people around them. Knowing what makes them sick and learning to avoid debilitating symptoms are cognitive resources for personal survival. With these resources these individuals can inhabit bodies that are routinely out of control with some degree of self-assurance.
Among its many manifestations, MCS is a dispute over the privilege to render a rational, in this case biomedical, account of a disabled body and the peculiar content of that account. It is a dispute over the ownership of expertise. It is a story about how institutions learn in a historical period wherein nonexperts wield languages of expertise to persuade influential others to modify their habits, regulations, and laws.
Narratives of the Environmentally Ill:
A Word about Methods
It is said that human misery is bearable only if we can tell a story about it. Perhaps it is because each of us is a storyteller that our lives have a measure of coherence and clarity. Life without narrative would be discontinuous, formless, seemingly random. Narrators create story lines, linking occurrences and ideas into plots, and give time and space a linear order. Moreover, “Personal experience must be assigned a central role in accounting for the understandability,” and, we would argue, origin, “of theoretical categories and concepts” (Calhoun 1995, 86).
Except for those whose symptoms are truly severe, who cannot write or talk without considerable discomfort, most people with MCS are willing to talk about their distress. To learn about the experiences of the environmentally ill, the first author attended an environmental 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
