Health Social Movements and Contested Environmental Illnesses

This work took place in two interrelated but distinct phases. The first phase was based in my work with Phil Brown’s Contested Illness Research Group. Upon moving to the University of San Francisco in 2002, I began to extend our work on health social movements in new directions by examining the spread of toxic hazards around the world and the challenges of mobilization against these hazards for people in developing countries. I delineate these two phases with the subheadings “Development of Contested Illness/Health Social Movement Framework” and “Extension of Contested Illness/Health Social Movement Framework to the Global Context.”

Development of Contested Illness/Health Social Movement Framework

My work on contested illnesses and health social movements began when Phil Brown invited me to be part of a project he was just launching when we met. The project was aimed at making a shift from the previous approach to studying environmental illness, which focused on specific geographical locations where known contaminants were suspected to be linked to ill health in a community, to a focus on classes of disease or illness with suspected environmental causes. In the former approach, which Phil had employed in his work examining the popular epidemiology that residents of Woburn, MA, practiced in linking a leukemia cluster in their community to a contaminated water supply, mobilization of a community, while sometimes contentious, is relatively straightforward. In the new approach, we were trying to understand how a group of people affected by an illness mobilize in the absence of a known source of contamination in a specific place.

We began by asking what kinds of obstacles a person faces when bringing the idea of an environmental cause of illness to a doctor or other health professional, which led to development of what we called a Dominant Epidemiological Paradigm (DEP). Our early work on Gulf War-related illnesses demonstrated how military and Veterans Administration doctors framed the presentation of symptoms by soldiers returning from service in the first Gulf War as the normal outcome of stressful combat situations. We published an article titled “Science, Policy, Activism and War: Defining the Health of Gulf War Veterans” (2002) that illustrated how the stress-based DEP was being invoked and the challenges that soldiers and veterans, spread across the country post-deployment, faced in drawing attention to environmental exposures and other possible explanations.

We also illustrated the operation of a DEP in the case of breast cancer and asthma. Our content analysis of print media coverage of breast cancer demonstrated how lifestyle factors like diet and exercise, as well as genetic predisposition (despite the fact that fewer than 10% of breast cancer cases can be explained by genetics), were treated as the most likely causes of breast cancer (see “Print Media Coverage of Environmental Causation of Breast Cancer” (2001)). With asthma, we were able to demonstrate through interviews with environmental justice activists and examination of campaigns by public health departments, and interviews with public health professionals, that a DEP based in a “healthy living” frame. Rather than focusing on air pollutants, especially the particulate matter typically higher in concentration in poor communities and communities of color, this frame focused on educating people how to minimize allergens, dust mites, and other indoor triggers of asthma (see “Clearing the Air and Breathing Freely: The Health Politics of Air Pollution and Asthma” (2004)).

As we developed and built on the concept of a Dominant Epidemiological Paradigm, we also began to explore the nuances of mobilization and movement strategies in embodied health movements. In Embodied Health Movements: New Approaches to Social Movements in Health” (2004), we first laid out a definition of embodied health movements and demonstrated how they are distant from other types of health social movements. We then demonstrated the significance of the “embodied” aspect of embodied health movements by drawing on interviews with environmental breast cancer activists describing how their mobilization was driven, in part, by the unique experience of a type of cancer located in the part of a woman’s body that is highly sexualized by our society (see “Gender, Embodiment, and Disease: Environmental Breast Cancer Activists’ Challenges to Science, the Biomedical Model, and Policy” (2004).

CIRG grew, adding new faculty and students and new areas of investigation. The work culminated in the 2012 publication of Contested Illnesses: Citizens, Science, and Health Social Movements.

Extension of Contested Illness/Health Social Movement Framework to the Global Context

As a scholar in the environmental field I had certainly heard of the 1984 Bhopal disaster. But my knowledge of it could be summarized as “American multinational corporation operates chemical plant in India, chemical plant explodes, world’s worst industrial disaster ensues.” What I did not know was that what happened in Bhopal affirmed but also challenged a lot of what social scientists believed about contamination events. Although Bhopal represented more of a location-based disease than the geographically distributed diseases I was studying with CIRG, the movement of survivors still had all of the characteristics of an embodied health movement. It seemed important to adapt what we had learned about these groups for a similar movements in a developing world context.

I applied for a Fulbright Senior Scholar Award in 2005 for research on “Environmental Health Activism in India: Civil Society Responses to Technological Crises” and was fortunate enough to receive an award. From November 2005 through May 2006 I traveled to many corners of India looking at ongoing struggles of people whose lives had been affected by toxic contamination. On research trips to Vietnam (2006), Indonesia (2007) and Senegal (2008), as well as a return visit to Bhopal in 2007, I learned how the legacy of the Bhopal disaster, and the movement it spawned, had wide ranging impacts.

This work also required delving into research and theorizing on globalization. I needed to understand how the processes of globalization shaping exposure to environmental contamination were also producing styles of social movement organizing and strategizing intended to hold accountable the transnational parties responsible for the contamination. The best example of my attempts to explain these processes appears in “Environmental Health Organizing in a Globalizing World: The Emergence of a Global Anti-Toxics Movement and its Political, Legal and Economic Challenges,” a chapter in the book Health and Environment: Social Science Perspectives (2010).

Activists at a weekly meeting (2006)

Activists at a weekly meeting (2006)

My work focusing specifically on the movement for justice in Bhopal has resulted in a wide range of publications and guest lectures. Although I cannot possibly represent the voices of the survivors in my writing or lectures, I try to unpack the complexities of the disaster and its legacy so that memory of the suffering is kept alive. “The Struggle for Justice in Bhopal: A New/Old Breed of Transnational Social Movement” (Global Social Policy, 2009), in which I examine the evolution of the survivor’s movement, is an example of this effort.

Sambhavna, a movement-funded community-based clinic providing free health services

Sambhavna, a movement-funded community-based clinic providing free health services

Elsewhere I have focused on the lessons survivors of the Bhopal disaster teach us, such as the need for community-based health approaches to treating survivors of industrial disasters (see “A Community Health Approach to Inclusive Urbanization: Learning from the Bhopal Disaster,” forthcoming in Inclusive Urbanization: Rethinking Policy and Practice in the Age of Climate Change.)

Derelict Union Carbide chemical plant in Bhopal

Derelict Union Carbide chemical plant in Bhopal

Some of my more recent work is the result of collaborations. With Tomás Mac Sheoin, who has written on Bhopal almost since the beginning, I co-authored a chapter for a book titled Black Beaches and Bayous: BP Deepwater Horizon Gulf Oil Spill Disaster, in which we examine the similarities in the response of BP following the 2010 Gulf oil disaster to Union Carbide’s response to the 1984 Bhopal disaster. For the 30th anniversary of the Bhopal disaster, the journal Social Justice is publishing a special issue on the Bhopal disaster. For that issue, my former grad student Bridget Botelho and I wrote an article titled “‘All the World’s a Stage’: The Bhopal Movement’s Transnational Organizing Strategies at the 2012 Olympic Games.”

 

Selected work

Development of Contested Illness/Health Social Movement Framework

Zavestoski, Stephen, Phil Brown, Meadow Linder, Sabrina McCormick and Brian Mayer. 2002. “Science, Policy, Activism and War: Defining the Health of Gulf War Veterans,” Science, Technology & Human Values 27:171-205.

Brown, Phil, Stephen Zavestoski, Brian Mayer, Sabrina McCormick, and Pamela Webster. 2002. “Policy Issues in Environmental Health Disputes.” Annals of the American Academy of Political and Social Sciences 584: 175-202.

Brown, Phil, Stephen Zavestoski, Sabrina McCormick, Joshua Mandelbaum, and Theo Luebke. 2001. “Print Media Coverage of Environmental Causation of Breast Cancer,” Sociology of Health and Illness 23: 747-775.

Brown, Phil, Stephen Zavestoski, Sabrina McCormick, Joshua Mandelbaum, Theo Luebke, and Meadow Linder. 2001. “A Gulf of Difference: Disputes over Gulf War-Related Illnesses,” Journal of Health and Social Behavior 42: 235-257.

Zavestoski, Stephen, Phil Brown, Sabrina McCormick. 2004. “Gender, Embodiment, and Disease: Environmental Breast Cancer Activists’ Challenges to Science, the Biomedical Model, and Policy,” Science as Culture 13(4):563-586.

Zavestoski, Stephen, Phil Brown, Sabrina McCormick, Brian Mayer, Jaime Lucove, and Maryhelen D’Ottavi. 2004. “Patient activism and the struggle for diagnosis: Gulf War Illness and other medically unexplained physical symptoms in the U.S.” Social Science & Medicine 58:161-175.

Brown, Phil, Stephen Zavestoski,, Sabrina McCormick, Brian Mayer, Rachel Morello-Frosch, Rebecca Gasior. 2004. “Embodied Health Movements: New Approaches to Social Movements in Health.” Sociology of Health & Illness 26(1):50-80.

Brown, Phil, Brian Mayer, Stephen Zavestoski, Theo Luebke, Joshua Mandelbaum, and Sabrina McCormick. 2004. “Clearing the Air and Breathing Freely: The Health Politics of Air Pollution and Asthma.” International Journal of Health Services 34(1):39-63. Also reprinted in Smoke and Mirrors: Air Pollution as a Social and Political Artifact, Melanie Dupuis (ed.) New York: New York University Press.

Zavestoski, Stephen, Rachel Morello-Frosch, Phil Brown, Brian Mayer, Sabrina McCormick, and Rebecca Gasior. 2005. “Health Social Movements and Contested Illnesses.” Pp. 253-278 in Daniel Meyers and Daniel Cress (eds.), Research in Social Movements, Conflict and Change, Vol. 25. San Diego: Elsevier/JAI Press.

Brown, Phil, Rachel Morello-Frosch, Stephen Zavestoski and the Contested Illnesses Research Group (eds.). 2012. Contested Illnesses: Citizens, Science, and Health Social Movements. Berkeley: University of California Press.

Brown, Phil and Stephen Zavestoski (eds.). 2005. Social Movements in Health. New York: Blackwell.

Extension of Contested Illness/Health Social Movement Framework to the Global Context

Botelho, Bridget, and Stephen Zavestoski. Forthcoming. “‘All the World’s a Stage’: The Bhopal Movement’s Transnational Organizing Strategies at the 2012 Olympic Games.” Social Justice (Dec. 2014)

Mac Sheoin, Tomás and Stephen Zavestoski. 2012. “Corporate Catastrophes from UC Bhopal to BP Deepwater Horizon: Continuities in Causation, Corporate Negligence, and Crisis Management.” In Black Beaches and Bayous: BP Deepwater Horizon Gulf Oil Spill Disaster, edited by Ashraf Esmail and Lisa Eargle, pp. 53-91. Lanham, MD: University Press of America.

Zavestoski, Stephen. 2010. “Environmental Health Organizing in a Globalizing World: The Emergence of a Global Anti-Toxics Movement and its Political, Legal and Economic Challenges.” In Health and Environment: Social Science Perspectives, edited by Helen Kopnina and Hans Keune, pp. 255-272. Hauppauge, NY: Nova Science Publishers.

Zavestoski, Stephen. 2009. “The Struggle for Justice in Bhopal: A New/Old Breed of Transnational Social Movement.” Global Social Policy 9:383-407.

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