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 to reduce the number of chemical agents that trigger her symptoms:
I stopped coloring my hair, stopped having my nails done, and stopped wearing makeup, as the petrochemicals made my eyelids swell, the tissue around my eyes dry out, and my eyelids crusty. I haven’t sat on my living room chairs and couches since 1989. They are foam filled and polyester covered. I sit only on cane Breuer chairs in my own home. Shower curtains, plastic implements, plastic bags, and plastic wrap for foods are out. I avoid plastic- and polyester-covered chairs whenever possible. This, of course, is almost impossible to do in our world.… I gradually eliminated the restaurants and auditoriums I would normally frequent, as the chemically treated air hurt a gland in my neck. I now never go to … theaters, movies, concerts, or plays, or into any commercially air-cooled or heated environment. I rarely go into stores of any kind as the chemicals in the treated air cause me pain which lasts for days after, and further open me to reactions from other sources.… This is not an environment I can tolerate.
This account portrays a body unable to tolerate routine beauty techniques for making it attractive; a body that severely reacts to ordinary commercial furniture designed to offer it at least a modicum of rest; a body that responds violently to air passed through conventional heating and cooling systems designed to make it more comfortable; and a body that is intolerant of the seemingly countless products lining the shelves of stores and markets. It is as if this body is in protest against the products of modernity and, in its distress, is calling for a radical change in the conventional boundaries between safe and dangerous. If the built environment, in combination with any consumer item that is made with a chemical compound, renders the body chronically sick and unable to work or consume, nothing less than the transformation of material culture is warranted. Resistance to the cultural legitimation of this new and troublesome body is hardly surprising.
Moreover, if the environmentally ill body portends a social transformation in production and consumption patterns, it also threatens the delicate filigree of personal habits and tastes, and their mutual confirmation in the highly stylized world of intimate and casual relationships. In the presence of one another, we depend on a shared, unspoken sense of what may be done or said without giving offense or committing an impropriety. For the chemically reactive, however, simple expressions of good taste and regard for others may become the sources of debilitating somatic distress. A man in his early thirties remembers
asking the people in my office to stop putting on so much cologne and perfume; I asked my office partner to stop using starch in his shirts.… My mom was willing to use another bathroom air thing (freshener) but my dad thought all this was much too strange.… I know it sounds strange but these things make me sick.
Somewhat indelicately, a more assertive woman reminds people around her, “Perfume causes brain damage. Think before you stink.”
The judges who decide the winner of these skirmishes are arrayed throughout society, from intimate others, friends, work associates, and strangers who encounter the chemically reactive to municipal, county, state, and federal governments that are petitioned to accommodate them. These official and unofficial judges hear both accounts, the marginalized voices of the environmentally ill and their allies on one side and the powerful voices of medicine and trade groups on the other, supported by the suasive plea of an internalized culture that pronounces the domestic environments and products of modernity “safe” for human use. The important question is whether or not people and organizations are willing to change their behaviors regarding bodies and environments based on stories by nonprofessionals who borrow from the vernacular of biomedicine to fashion explanations of the origin of their troubles. If there is change, it is in opposition to the medical profession that refuses to acknowledge the legitimacy of environmental illness as a bio-organic disorder. If there is evidence that people and especially organizations are listening to the stories of the chemically reactive and modifying social and physical environments to assist them in coping with their troubles, then an arguably new form of social learning is surfacing, one in which organizations are bypassing a profession as a source of knowledge and modifying their practices in accord with
