Bodies in Protest. Steve Kroll-Smith

irritant, the body begins to express intolerance to an increasing array of unrelated irritants. A person with EI, for example, can react to volatile organic compounds emitted from gas stoves, dry-cleaned clothing, ammonia found in paper products, boron in cosmetics, phenol in air fresheners, and ethyl chloride in plastics, at doses that are magnitudes below those known to be dangerous. Ann became ill when she was exposed to formaldehyde in the new carpet in her office. A few days after the onset of her initial symptoms, she noticed that her body reacted aversely to her husband’s colognes, her housekeeper’s cleaning solvents, the painted wooden baskets hanging in her den, her laundry soap, and so on.²

      The body’s increasing intolerance to ordinary, putatively benign places and mundane consumer products is a key feature of this illness and one that baffles most physicians. “We don’t dismiss these people, they are truly ill,” admits a prominent allergist and medical researcher who speaks for the majority of practicing physicians, “but batteries of chemical tests can’t pinpoint any specific sensitivity. Some are definitely allergic and we all agree that they are suffering, but we simply don’t understand the cause of the disease as determined by medical diagnosis” (Selner 1991, 2–3). Another sympathetic but discouraging assessment concludes that “there is no laboratory test that can diagnose MCS, no fixed constellation of signs and symptoms, and no single pathogen to isolate and transmit through a cell line.… Even worse, some chemicals are neurotoxic and may produce symptoms that resemble anxiety attacks or mood disorders” (Needleman 1991, 33). Still more pessimistic is a public health physician who concludes that at present what is known about MCS “is insufficient to recommend programs for preventive strategies” (Bascom 1989, 36).

      Adding to an already complicated theory is a premise that bodies are vulnerable to extremely low levels of chemical exposures: “below exposure levels for various chemicals established by the government, and usually below exposure levels tolerated by most people” (Pullman and Szymanski 1993, 17). This a difficult premise to test, however. If exposure levels are orders of magnitude below those deemed medically permissible, measuring concentrations of chemicals in soil, air, or water is unlikely to yield any useful information. If the concentrations are lower than permissible levels, the question still remains, How are they adversely affecting these bodies? The question is currently unanswerable empirically, though MCS suggests a theoretical rationale: Is it not possible that some bodies are more sensitive than others? Is it reasonable to sort bodies into nonsensitive, sensitive, and “hypersensitive,” where sensitive bodies are more reactive than non-sensitive bodies, and hypersensitive bodies “are more sensitive than sensitive”? (Bascom 1989, 10; Ashford and Miller 1991). At least one person with EI now sorts his world into new categories: “I use to think in terms of people who are good on the one hand and bad people. Now I’m more likely to wonder whether this person is supersensitive like me or able to tolerate everything.”

      Complicating an already complex theory, another premise of MCS is that each chemical irritant may trigger a different constellation of symptoms in each person and that every system in the body can be adversely affected. Thus, combinations of body systems and symptoms interact geometrically, creating, at least theoretically, a seemingly endless configuration of somatic miseries (Pullman and Szymanski 1993, 17; Ashford and Miller 1991; Cullen 1987). Consider, for example, an abbreviated list of EI symptoms distributed by the Chemical Injury Information Network, an MCS support group. Among the sixty-two symptoms listed are sneezing, loss of smell, nosebleeds, dysphagia (difficulty in swallowing), dry or burning throat, tinnitus (ringing in the ears), hearing loss, hyperacusis (sound sensitivity), coughing, shortness of breath, hyperventilation, high and low blood pressure, hives, constipation, thirst, spontaneous bruising, swelling of heart or lungs, night sweats, insomnia, poor concentration, and depression (Duehring and Wilson 1994).

      Robert loses his balance and becomes disoriented when he is around fresh paint, while Diane is likely to become nauseated and tired. Both manifest different symptoms when exposed to different chemical agents, challenging the biomedical assumption that each disease is caused by a specific aversive agent affecting an identifiable body system (Freund and McGuire 1991). Symptoms simultaneously involving multiple body systems, but affecting each differently, violate a foundational assumption of biomedicine that diseases are classed as specific pathological configurations (Kroll-Smith and Ladd 1993). A physician-researcher who frequently testifies against plaintiffs who claim to be environmentally ill and sue their employers for negligence in the management of a chemical work environment writes, “The persistence of symptoms, worsening of symptoms, and appearance of additional new symptoms during therapy attest to a pattern of fear of the everyday environment engendered by an unfounded perception of an environmentally damaged immune system” (Terr 1987, 693). A theory of chemically damaged immune systems, however, is only one of several pathophysiology theories of MCS, as we will see in chapter 5.

      Finally, people with MCS are likely to ascribe to a treatment regimen that emphasizes avoidance and lifestyle changes rather than drugs, surgery, or other invasive therapies (Bascom 1989; Ashford and Miller 1991; Kroll-Smith and Ladd 1993). Healing the body is specifically not an invasive procedure. Rather, healing begins with removing the offending substances from the body and working to keep those substances at a safe distance. Avoidance and self-discipline are key elements of successful coping. Avoidance measures can be as subtle as moving away from a person wearing hair spray or cologne to moving into an environment built specifically to reduce chemical exposure. Wimberly, a small town in central Texas, has gradually become a chemically free refuge for people with extreme MCS. While only a small number of the chemically reactive move to such special environments, most are forced into some form of social and spatial exile to successfully manage their symptoms.

      Avoidance can also be more proactive. Increasingly, people who theorize their bodies’ relationship to environments using some variant of MCS try to persuade others to change their personal habits, approach employers with specific requests that would reduce their exposure to offending substances, and appeal to local, state, and national legislatures to create “safe zones” free of dangerous chemicals.³

      A strategy of avoidance based on escape and one based on changing habits, ordinances, or the materials of production are effectively redrawing the boundaries between safe and dangerous places, though with varying social and political effects. Families who leave Los Angeles and move high into the Sierra Madres to escape a chemically saturated world are building alternative, “ecologically safe” communities; they are not, however, directly challenging society to change. A wife who refrains from wearing a “toxic scent,” an employer who moves an offending copying machine from a nearby office, and a county board of supervisors that passes an ordinance establishing a “fragrance-free zone” in the local courthouse are examples of social and legal accommodations to the environmentally ill who petition others to change. When others change, the environmentally ill stand a chance of living within society rather than merely surviving by escaping from it.

      Whether they manage their symptoms by escaping society or challenging it, or some combination of the two, the environmentally ill are forced to carve up the meaning of space in a manner unfamiliar to most people. Thus, while their behavior can appear strange and untoward, perhaps insulting, to others, for them it is a reasonable response to the management of their symptoms.

      ~

      The exact number of people who claim to be environmentally ill is not known. The U.S. Department of Health and Human Services admits it cannot estimate their numbers (Samet and Davis 1995). Commonsense comparisons, speculation, and anecdotes are the fallback strategies for calculating the scope of the problem. The Labor Institute of New York notes: “While it is clear that a significant portion of the population is sensitive to irritants such as cigarette smoke, the percentage of individuals who are significantly affected by multiple chemical sensitivities appears to be much smaller” (Pullman and Szymanski 1993, 18).

      Though it does not use the term multiple chemical sensitivity, environmental illness, or any of the other variants, the National Academy of Sciences (1987) suggests that between 15 and 20 percent of the U.S. population is allergic to chemicals commonly found in the environment, placing them at increased risk