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Bodies in Protest

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

Steve Kroll-Smith
H. Hugh Floyd
Copyright Date: 1997
Published by: NYU Press
Pages: 238
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  • Book Info
    Bodies in Protest
    Book Description:

    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.

    eISBN: 978-0-8147-4923-4
    Subjects: Health Sciences

Table of Contents

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  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-viii)
  3. Acknowledgments
    (pp. ix-x)
  4. Preface
    (pp. xi-xiv)
  5. Introduction
    (pp. 1-14)

    In the early nineteenth century, the air of European cities was thought to be the source of infection and disease. The wordmiasmaentered popular conversation and meant, quite literally, dangerous, deathlike air. It was not acute toxicity that disabled the person, but noxious exhalations from open sewers and industrial effluents that together worked in a slower, more villainous fashion. Urban air was characterized as particularly sinister, and people prone to illness were advised to spend as much time in the country as their resources would permit (Sontag 1989).

    In 1880 the American neurologist George M. Beard identified a pattern...


    • 1 Environmental Illness as a Practical Epistemology and a Source of Professional Confusion
      (pp. 17-42)

      The confusing nature of MCS is reflected in the number of terms enlisted to describe it: environmental illness, chemical sensitivity, cerebral allergy, chemically induced immune dysregulation, total allergy syndrome, universal reactor syndrome, ecologic illness, chemical hypersensitivity syndrome, universal allergy, and, more alarming, chemical AIDS and twentieth-century disease. To simplify discussion we will use the termsmultiple chemical sensitivity,or MCS, andenvironmental illness,or EI, to refer to the disease and the termschemically reactiveandenvironmentally illto refer to the people living with the disease.

      While the terms describing this medical condition vary, they converge on a number...

    • 2 Chemically Reactive Bodies, Knowledge, and Society
      (pp. 43-68)

      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...


    • 3 Something Unusual Is Happening Here
      (pp. 71-88)

      Our bodies are surrounded by environments and themselves constitute parts of environments that other bodies experience. In spite of this close affinity with biophysical environments (or, perhaps, because of it), most people do not pay close attention to their bodies’ complex relationships to biospheres and the things in them. In the absence of obviously dangerous environments that pose immediate threats to survival or physical well-being, the stance taken toward biophysical surroundings is probably one of “nothing unusual is going on here.” And more likely than not this stance is taken in the absence of any serious reflection. It is simply...

    • 4 Bodies against Theory
      (pp. 89-110)

      A striking feature of the interviews we collected was the common activities among people who would later identify themselves as chemically reactive. Like sleuths in search of clues, these people interrogate their material environments as possible perpetrators of disease. In systematic fashion they look for relationships between symptoms and specific places and things. Truth for those with MCS is not sought outside of a rational practice.

      If the initial stage of EI is accepting the unsettling idea that formerly safe and nurturing places are now health hazards, the second move a chemically reactive person is likely to make is a...

    • 5 Explaining Strange Bodies
      (pp. 111-140)

      A turning point for many of the chemically reactive is the failure of prevailing medical theory and practice to acknowledge their immediate and tangible somatic experiences. It is worth recalling a point made briefly in the last chapter. By the time the chemically reactive are seeking the counsel and care of physicians, many of them have already developed a rudimentary understanding of their troubles. Matching variable environments and consumer products with variable symptoms, people approaching the medical profession know something useful about their somatic complaints based on immediate, tangible experiences.

      It is this practical, useful knowledge that is generally unacknowledged...


    • 6 Representation and the Political Economy of a New Body
      (pp. 143-162)

      Imagine a single person living without the company of others who is free to exercise considerable control over his environments. Now suppose this person begins to experience frightening changes in his body as it touches or absorbs what were once thought to be safe places and things. A reasonable response to his dilemma would be a systematic inventory of his habitat to discover just what was making him sick. If in rearranging or changing his environments he also restored his health, this imaginary person could continue his life without devoting much additional attention to what originally troubled him.

      Imagine this...

    • 7 A New Body in the Courts, Federal Policies, the Market, and Beyond
      (pp. 163-182)

      We can assume the termdamage potentialin the preceding is not referring to risk to human health and well-being but to the harm caused employers and manufacturers who must pay in the event they are found responsible for a plaintiff’s physical disability. Recognizing the grave potential in legal recognition of MCS, the Chemical Manufacturers Association called for a coordinated effort between insurance companies, the medical community, and consumer product manufacturers to resist the definition of MCS as an environmentally induced disease (Delicate Balance,spring/summer 1990; spring/summer 1991). The concern is understandable.

      Also understandable, though for quite different reasons, is...


    • 8 Bodies, Environments, and Interpretive Space
      (pp. 185-204)

      It is a late summer day in a southern university where a sociology professor is lecturing to a group of students. This class begins as others that preceded it during the semester, with nothing unusual happening. However, on this day, shortly after the lecture gets under way, two students in the back of the room begin coughing, making a dry, hacking sound. At first their coughing is barely discernible, but within a few seconds, several other students also start coughing. After a couple of more minutes, more students and then the professor are coughing. The classroom routine is disrupted. Something...

  10. Notes
    (pp. 205-208)
  11. Bibliography
    (pp. 209-218)
  12. Name Index
    (pp. 219-220)
  13. Subject Index
    (pp. 221-224)
  14. Back Matter
    (pp. 225-225)