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Contested Illnesses: Citizens, Science, and Health Social Movements

Phil Brown
Rachel Morello-Frosch
Stephen Zavestoski
the Contested Illnesses Research Group
Copyright Date: 2012
Edition: 1
Pages: 352
Stable URL: http://www.jstor.org/stable/10.1525/j.ctt7zw1q9
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  • Book Info
    Contested Illnesses
    Book Description:

    The politics and science of health and disease remain contested terrain among scientists, health practitioners, policy makers, industry, communities, and the public. Stakeholders in disputes about illnesses or conditions disagree over their fundamental causes as well as how they should be treated and prevented. This thought-provoking book crosses disciplinary boundaries by engaging with both public health policy and social science, asserting that science, activism, and policy are not separate issues and showing how the contribution of environmental factors in disease is often overlooked.

    eISBN: 978-0-520-95042-9
    Subjects: Public Health, Health Sciences
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Table of Contents

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  1. Front Matter (pp. i-iv)
  2. Table of Contents (pp. v-viii)
  3. List of Illustrations (pp. ix-x)
  4. ACKNOWLEDGMENTS (pp. xi-xii)
  5. List of Abbreviations (pp. xiii-xvi)
  6. PART ONE. SETTING THE STAGE:: INTRODUCTION, THEORY, METHODS
    • 1 Introduction: Environmental Justice and Contested Illnesses (pp. 3-14)
      Rachel Morello-Frosch, Phil Brown and Stephen Zavestoski

      During the summer of 2008, community members in Richmond, California, filed out of a packed and raucous city council meeting after being handed a major setback. Despite Herculean organizing efforts and passionate testimony by fenceline neighbors,¹ council members had voted to approve a conditional-use permit allowing the Chevron oil refinery to increase its production capacity by refining lower-grade crude oil with a higher sulfur content, resulting in increased emissions of harmful sulfur dioxide, sulfates, and metals (Jones 2008; Baker 2007). The Richmond Chevron refinery is one of the nation’s largest, covering 2,900 acres, employing a thousand workers, and processing more...

    • 2 Embodied Health Movements (pp. 15-32)
      Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski, Sabrina McCormick, Brian Mayer, Rebecca Gasior Altman, Crystal Adams, Elizabeth Hoover and Ruth Simpson

      When the US Preventive Services Task Force recommended in late 2009 that women not start regular mammography until age fifty, it sparked an uproar in the media, in policy circles, and among women’s health advocates. Although this new recommendation was based on a body of scientific studies demonstrating the limits of mammography in reducing breast cancer mortality rates among women under fifty, it threatened to undermine dominant medical and public health messages regarding mammography as a reliable strategy for disease “prevention” or “early detection.” Drawing from her personal experience with breast cancer, Barbara Ehrenreich boldly advocates prevention and treatment through...

    • 3 Qualitative Approaches in Environmental Health Research (pp. 33-45)
      Phil Brown

      Health researchers are increasingly turning to qualitative methods, used either on their own or in combination with quantitative methods (Bourgeault, DeVries, and Dingwall 2010). Qualitative methods give a voice to individuals and community organizations and provide fuller, more complex descriptions of the affected community. For this reason, these approaches often support laypeople’s discovery of, and action on, hazards and disease. Quantitative data are helpful for demonstrating the existence of environmental exposures and health effects but offer only a partial picture. Only through qualitative data can we understand how people and communities experience and act on these problems.

      There is growing...

    • 4 Getting Into the Field: New Approaches to Research Methods (pp. 46-63)
      Phil Brown, Rachel Morello-Frosch and Stephen Zavestoski

      Chapter 2 discussed the theoretical foundation underlying our work, which addresses the lack of suitable frameworks on health movements involving contested illnesses and their resistance to scientization. Research on contested illnesses also requires methodological innovations. This chapter presents three such innovations: analytical methods we termfield analysisandpolicy ethnography, and our adaptation of community-based participatory research. Field analysis situates social movements within social and institutional worlds that include diverse strategic allies and coalition partners, some of them with conflicting perspectives. These may include government, academic, scientific, and civic organizations. Policy ethnography, which employs field analysis as an analytical tool,...

    • 5 Environmental Justice and the Precautionary Principle: Air Toxics Exposures and Health Risks among Schoolchildren in Los Angeles (pp. 64-76)
      Rachel Morello-Frosch, Manuel Pastor and James Sadd

      The emergence over the past three decades of the concepts of environmental justice and the precautionary principle have transformed environmental policy making, research, and community organizing. Yet despite the burgeoning literature on both of these frameworks and the fact that they share some important tenets, they have not been well integrated at either the theoretical or the policy level. In this chapter we examine their foundations and propose ways in which they can be better integrated to reshape policy making to protect public health, particularly for vulnerable populations, such as the poor and communities of color.

      This chapter presents quantitative...

  7. PART TWO. WORKING IN THE ENVIRONMENTAL HEALTH FIELD:: ETHNOGRAPHIC STUDIES
    • 6 A Narrowing Gulf of Difference? Disputes and Discoveries in the Study of Gulf War–Related Illnesses (pp. 79-107)
      Phil Brown, Stephen Zavestoski, Alissa Cordner, Sabrina McCormick, Joshua Mandelbaum, Theo Luebke and Meadow Linder

      The contestations over symptoms reported by veterans of the 1991 Gulf War offer seemingly endless opportunities for investigating social disputes. According to our definition of contested environmental illnesses as diseases and conditions that engender scientific disputes and public debates over environmental causes, Gulf War–related illnesses represent contested illness par excellence.¹ In this chapter, we revisit our study “A Gulf of Difference: Disputes over Gulf War–Related Illnesses” (Brown et al. 2001b) in light of our more recent work on contested illnesses. Given the conclusion of a recent report that “scientific evidence leaves no question that Gulf War illness is...

    • 7 The Health Politics of Asthma: Environmental Justice and Collective Illness Experience (pp. 108-122)
      Phil Brown, Brian Mayer, Stephen Zavestoski, Theo Luebke, Joshua Mandelbaum, Sabrina McCormick and Mercedes Lyson

      Asthma rates have risen so much in the United States in recent decades that medical and public health professionals speak of an epidemic, particularly in urban centers. The number of individuals with asthma in the United States grew by 73.9 percent between 1980 and 1996, with an estimated 14.6 million people reporting suffering from asthma in 1996. This is widely believed to be a real increase, not an artifact of diagnosis (Sears 1997; Woolcock and Peat 1997; Goodman, Stukel, and Change 1998; Mannino et al. 2002). Since then, asthma prevalence rates have reached a plateau, at roughly 7.7 percent of...

    • 8 Pollution Comes Home and Gets Personal: Women’s Experience of Household Chemical Exposure (pp. 123-146)
      Rebecca Gasior Altman, Rachel Morello-Frosch, Julia Green Brody, Ruthann A. Rudel, Phil Brown and Mara Averick

      Until recently, most work on environmental pollution focused on problems in the air, water and soil. This chapter offers a new theoretical framework, which we call the exposure experience, to examine the presence and effects of chemical pollutants in homes and inside bodies. To medical sociologists’ work on “illness experience,” our work adds a focus on the environmental experience of communities, the role of science in shaping people’s experiences of their health and bodies, and a focus on embodied experiences that may precede the manifestation of symptoms.

      For this study, our primary field site was the homes of middle- and...

    • 9 The Personal Is Scientific, the Scientific Is Political: The Public Paradigm of the Environmental Breast Cancer Movement (pp. 147-168)
      Sabrina McCormick, Phil Brown, Stephen Zavestoski and Alissa Cordner

      Since the early 1990s, the environmental breast cancer movement has advanced a new public paradigm for causes of the disease. We describe here the framework, history, and strategies of the national environmental breast cancer movement (EBCM), or what one leading activist terms the “political breast cancer movement” (Brenner 2000).¹ Although now national in scope, the EBCM has its roots in three regions: Long Island, New York; the Boston and Cape Cod areas in Massachusetts; and the San Francisco Bay Area in California. Our case studies demonstrate the importance of understanding the fluidity of social movement actors and the concept of...

    • 10 School Custodians and Green Cleaners: Labor-Environmental Coalitions and Toxics Reduction (pp. 169-188)
      Laura Senier, Brian Mayer, Phil Brown and Rachel Morello-Frosch

      In the fall of 2003, the Boston Urban Asthma Coalition (BUAC) and the Massachusetts Committee on Occupational Safety and Health (MassCOSH) launched the Green Cleaners Project, a coalition of organizations, including labor unions and school administrators, to address well-documented problems of environmental quality in Boston schools. Coalition participants wanted to ensure that discussions about environmental health problems in Boston schools and their remediation would include the broadest possible array of stakeholders, including parents, teachers and other school employees, school administrators, and community health advocates. Despite the expensive and capital-intensive nature of solutions to many of the environmental health problems documented...

    • 11 Labor-Environmental Coalition Formation: Framing and the Right to Know (pp. 189-208)
      Brian Mayer, Phil Brown and Rachel Morello-Frosch

      Labor unions and environmental organizations occasionally become allies in the fight for the protection of workplace and environmental health. An increasing number of collaborations between “blues” and “greens” in the United States have been identified by social movement scholars (Minchin 2003; Obach 2004a; Estabrook 2006; Mayer 2008). Unions like the United Steelworkers are redefining the labor movement’s political agenda and working to build ties with nontypical allies, including the environmental movement. This collaboration may redefine the relationships between these two social movements and offer new opportunities for advancing workplace safety and environmental health through the linkage of two distinct narratives...

    • 12 The Brown Superfund Research Program: A Multistakeholder Partnership Addresses Problems in Contaminated Communities (pp. 209-224)
      Laura Senier, Benjamin Hudson, Sarah Fort, Elizabeth Hoover, Rebecca Tillson and Phil Brown

      The National Institute of Environmental Health Sciences (NIEHS) has a long tradition of coordinating basic research programs with community outreach. It has sought to promote science that engages communities in numerous aspects of environmental health research, from the identification of exposures of concern to the development of research priorities, the collection of data and interpretation of research findings, and the implementation of effective interventions to reduce exposures and protect public health. One example is the Superfund Research Program (SRP), which is dedicated to funding multidisciplinary research “to provide a solid foundation which environmental managers and risk assessors can draw upon...

  8. PART THREE. ETHICAL CONSIDERATIONS
    • 13 Toxic Ignorance and the Right to Know: Biomonitoring Results Communication: A Survey of Scientists and Study Participants (pp. 227-244)
      Rachel Morello-Frosch, Julia Green Brody, Phil Brown, Rebecca Gasior Altman, Ruthann A. Rudel, Carla Pérez and Alison Cohen

      Tired of government inaction toward community concerns about refinery pollution in her neighborhood, Ethel Dotson, a fifty-three-year resident of Richmond, California, decided it was time to up the ante. Armed with ten vials of her own blood, she joined several other residents in front of California’s Hazardous Materials Laboratory and demanded that officials test their blood for dioxin and other contaminants. “I have a right to know what’s in my body,” she argued (Sarker 2000). Dotson’s demand that the state document “chemical trespass” (Doyle 2004) in her body reveals the scientific promise, as well as policy and ethical challenges, of...

    • 14 IRB Challenges in Community-Based Participatory Research on Human Exposure to Environmental Toxics: A Case Study (pp. 245-260)
      Phil Brown, Rachel Morello-Frosch, Julia Green Brody, Rebecca Gasior Altman, Ruthann A. Rudel, Laura Senier, Carla Pérez and Ruth Simpson

      In 1979 the Belmont Report established principles for the use of human subjects in scientific research (National Institutes of Health 1979). Developed partly in response to the Tuskegee syphilis study (the infamous forty-year study of deliberate nontreatment of syphilis), the Belmont Report identified three basic principles governing the ethical use of human research subjects, including their informed consent. The first principle, respect for persons, stressed that an individual’s decision to become a research participant must be voluntary, and it called for special protection for those who lacked the capacity to make such a decision themselves. The second principle, beneficence, called...

    • 15 Conclusion (pp. 261-268)
      Phil Brown, Rachel Morello-Frosch and Stephen Zavestoski

      For more than a decade the Contested Illnesses Research Group (CIRG) has combined policy-rooted fieldwork with scientific inquiry to build a multilayered research program. We have created an ethnographic fieldwork approach with roots in public sociology that has community-engaged research as its primary orientation. CIRG is part of a larger network of academics and activists that has created synergies to advance the health social movements that we study.

      We believe the methodological and theoretical approaches discussed in this book provide new ways of understanding contested-illness struggles within the broader field of health social movements, particularly those movements focused on environmental...

  9. APPENDIX: Contested Illnesses Research Group’s Nuts and Bolts and Lessons Learned (pp. 269-274)
    Laura Senier, Rebecca Gasior Altman, Rachel Morello-Frosch and Phil Brown
  10. REFERENCES (pp. 275-306)
  11. List of Contributors (pp. 307-308)
  12. INDEX (pp. 309-324)
  13. Back Matter (pp. 325-325)