Bodies in Protest: Environmental Illness and the Struggle over Medical Knowledge

Bodies in Protest: Environmental Illness and the Struggle over Medical Knowledge

Bodies in Protest: Environmental Illness and the Struggle over Medical Knowledge

Bodies in Protest: Environmental Illness and the Struggle over Medical Knowledge


Gulf War Syndrome: Is It a Real Disease? asks a recent headline in the New York Times. This question--are certain diseases real?--lies at the heart of a simmering controversy in the United States, a debate that has raged, in different contexts, for centuries. In the early nineteenth century, the air of European cities, polluted by open sewers and industrial waste, was generally thought to be the source of infection and disease. Thus the term miasma--literally deathlike air--came into popular use, only to be later dismissed as medically unsound by Louis Pasteur.

While controversy has long swirled in the United States around such illnesses as chronic fatigue syndrome and Epstein-Barr virus, no disorder has been more aggressively contested than environmental illness, a disease whose symptoms are distinguished by an extreme, debilitating reaction to a seemingly ordinary environment. The environmentally ill range from those who have adverse reactions to strong perfumes or colognes to others who are so sensitive to chemicals of any kind that they must retreat entirely from the modern world.

Bodies in Protest does not seek to answer the question of whether or not chemical sensitivity is physiological or psychological, rather, it reveals how ordinary people borrow the expert language of medicine to construct lay accounts of their misery. The environmentally ill are not only explaining their bodies to themselves, however, they are also influencing public policies and laws to accommodate the existence of these mysterious illnesses. They have created literally a new body that professional medicine refuses to acknowledge and one that is becoming a popular model for rethinking conventional boundaries between the safe and the dangerous.

Having interviewed dozens of the environmentally ill, the authors here recount how these people come to acknowledge and define their disease, and themselves, in a suddenly unlivable world that often stigmatizes them as psychologically unstable. Bodies in Protest is the dramatic story of human bodies that no longer behave in a manner modern medicine can predict and control.


Another pandemic illness is emerging in American society. It is called, among other things, multiple chemical sensitivity (MCS), environmental illness (EI), and somewhat ominously, twentieth-century disease. It invites comparison with that most deadly modern pandemic, aids. in two important respects the terms multiple chemical sensitivity and acquired immunodeficiency syndrome are alike. in a strict sense, neither term denotes a disease at all. They both refer to medical conditions that are expressed in a complex array of symptoms and disorders. One person with McS, for example, may experience memory loss and fatigue, while another breaks out in skin wheals and loses motor control. An aids patient, on the other hand, is vulnerable to a number of cancers or may succumb to pneumonia.

A second feature shared by McS and aids is their common origin in environments, albeit quite different ones. It appears that hiv, the human immunodeficiency virus that causes aids, was confined to African rain forests until liberated by commercial deforestation practices. Indeed, Ebola, Marburg, and aids are, by all accounts, tropical viruses that would likely live in rain forests at no risk to humans if the forests were left uncultivated. Likewise, McS is apparently caused by human intervention into environments. But, unlike aids, it is not an infectious agent freed from ancient ecosystems to hunt for human hosts. Instead, the commodities of late capitalist society, built environments, and consumer goods have unleashed this new pandemic. McS is not a virus in search of a remedy; it is, to risk the charge of hyperbole, a somatic indictment of modernity.

While an antidote for the aids virus continues to elude biomedical . . .

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