Bodies in Protest. Steve Kroll-Smith
people, however, Jack’s story is questionable, indeed bizarre. He tells a fantastic tale about bodies and environments. Moreover, he requests that others modify and change what have always seemed benign, if not aesthetic or pleasurable, behaviors. If they do not do so, they are implicated in the exacerbation of his illness. His spouse, a friend, the teller at the corner bank, an office mate, a sociologist who requests an interview, and even a complete stranger become potential sources of acute, debilitating distress; once safe, innocuous places are now health risks. Jack approaches his new life as environmentally ill armed with an explanation of his body and its complicated relationship to common consumer items and local places.
For Jack, MCS is not only a chronic sickness; it is a vocabulary of motives, a type of “justificatory conversation” (Mills 1967). The “truth” of Jack’s story can be measured in the degree of accommodation people make to his disabled body. The success of the environmentally ill in convincing others of the threat to health posed by mundane environments and ordinary consumer items, while also claiming the right to institutional recognition of their sickness, depends, as we will see, on the ability to borrow liberally from the vernacular of biomedicine to lobby for the transformation of their illness experiences into an official disease.
Environmental Illness as a Practical Epistemology
What is true for Jack is true for thousands of people living with bodies they believe are made sick by the environment. Multiple chemical sensitivity is a nascent theory of bodies and environments. It is a novel form of theorizing the relationships of people, bodies, and environments that unhinges an expert knowledge from an expert system and links it to historical and biographical experience to make a particularly persuasive claim on truth. It is a local knowledge, constructed in situ by people who believe they need to reorganize how they think about their bodies and the environments that surround them. Power may be a source of knowledge in a post-Enlightenment world, as Foucault announced, but rational knowledge nevertheless remains a powerful social resource. Indeed, if modernity has a commandment it is to act in accord with reason.5 Rational knowledge is always an assertion of the correct, the logical, the appropriate. If something is accepted as true, then rational organizations and human beings are expected to organize their conduct to reflect this truth. Rational knowledge “is always a legitimating idea” (Wright 1992, 6). In fact, it is self-legitimating insofar as its claim to truth rests on the premise that “all that is real is rational, [while] all that is rational is real” (Lyotard 1992, 29). Thus, to accept someone’s account as rational is to tacitly commit to the line of conduct and belief embedded in that account, or to risk the charge of behaving irrationally.
Society places a particular premium on the authority of rational knowledge to regulate nature and health (Wright 1992; Touraine 1995; Freund and McGuire 1991). Knowing nature, including the nature of the body, depends upon a detached observer trained to identify by means of calibrated instruments the intricacies of biological and physical systems. It is not surprising, therefore, that the privilege of theorizing the body and its relationship to the environment is limited to people educated and licensed by the state to speak the language of biomedicine.
It is the chemically reactive, however, and not the medical profession, who are classifying and explaining their anomalous medical condition. People who identify themselves as environmentally ill are shifting the social location of theorizing bodies and environments from medical professionals to nonprofessionals, from experts to nonexperts. When theorizing somatic distress in the language of biomedicine shifts from experts to laypersons, it enters a new social world, one governed by purposes other than institutional legitimation. Thus, when expert knowledge is separated from its institutional moorings and taken into another world, it is likely to be fashioned into a new cultural tool, or, as Geertz (1983) would have it, a “practical epistemology” (151). While Geertz leaves this term purposively vague, we will mean by it a technical, rational way of knowing that is responsive to the immediate personal and communal needs of nonexperts. A practical epistemology, in other words, joins the world of personal and biographical experiences to forms of instrumental rationality. Jack’s story of an ballpoint pen is a good example of a practical epistemology at work. The state-sponsored owners of biomedical knowledge most likely would dismiss his account as nonsense, if not evidence of delusion. Jack, however, borrows liberally from biomedicine and common sense to conceptualize and organize a world of signs that allows him to explain and respond to a body his doctors cannot understand.6
It is not a desire to engage the medical profession in spirited 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