using the article answer each questions SEPARATELY? 1. In your own words explain the importance of health social movements? 2. Why do you think the researchers favor

Sociology of Health & Illness Vol. 26 No. 1 2004 ISSN 0141–9889, pp. 50–80

© Blackwell Publishing Ltd/Editorial Board 2004. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden MA 02148, USA

Blackwell Publishing LtdOxford, UKSHILSociology of Health & Illness0141–9889© Blackwell Publishing Ltd/Editorial Board 2004January 20042611000Original ArticleNew approaches to social movements in healthPhil Brown, Stephen Zavestoski, Sabrina McCormick et al.

Embodied health movements: new approaches to social movements in health Phil Brown

1

, Stephen Zavestoski

2

, Sabrina McCormick

1

, Brian Mayer

1

, Rachel Morello- Frosch

1

and Rebecca Gasior Altman

1

1

Brown University

2

University of San Francisco

Abstract

Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories:

health access movements

seek equitable access to health care and improved provision of health care services;

constituency- based health movements

address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and

embodied health movements

(EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body to social movements, especially with regard to the embodied experience of people with the disease; 2) they typically include challenges to existing medical / scientific knowledge and practice; and 3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research and expanded funding. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement.

Keywords:

social movements, health activism, breast cancer

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© Blackwell Publishing Ltd/Editorial Board 2004

Introduction

Social movements dealing with health are very important influences on our health care system, and a major force for change in the larger society. The first instances of social movements organising around health issues date at least back to concerns with occupational health during the Industr- ial Revolution. More recently, women’s health activists have greatly altered medical conceptions of women, broadened reproductive rights, expanded funding and services in many areas, altered many treatment forms (

e.g.

breast cancer), and changed medical research practices (Ruzek 1978, Ruzek, Olesen and Clarke 1997, Morgen 2002). Similarly, AIDS activists have achieved expanded funding, greater medical recognition of alternative treatment approaches and major shifts in how clinical trials are conducted (Epstein 1996). Mental patients’ rights activists have brought major shifts in mental health care, including the provision of many civil rights that used to be inferior to those of prisoners, and have achieved both the right to better treatment and the right to refuse certain treatments (Brown 1984).

Citizens dealing with issues of general health access have fought against hospital closures, struggled against curtailment of medical services and against restrictions by insurers and managed care organisations (Waitzkin 2001). Self-care and alternative care activists have broadened health profes- sionals’ awareness of the capacity of laypeople actively to deal with their health problems (Goldstein 1999). Disability rights activists have garnered major advances in public policy on disability rights such as accessibility and job discrimination, while also countering stigma against people with disabil- ities (Shapiro 1993). Toxic waste activists have drawn national attention to the health hazards of chemical, radiation and other hazards, helping shape the development of the Superfund Program, obtain regulations and bans on toxics, and remediate many hazardous sites (Brown and Mikkelsen 1990, Szasz 1994). Environmental justice activists, who are centrally concerned with environmental health, have publicised the links between physical health and social health, in the process proving health improvement and disease prevention require attention to, and reform of, a variety of social sectors, such as housing, transportation and economic development. This has led to a presidential Executive Order requiring all federal agencies to deal with environmental inequities, has prevented further creation of such inequities, and has generated numerous academic-community partnerships to study, treat, and prevent asthma (Bullard 1994, Shepard

et al.

2002). Occupational health and safety movements have brought medical and governmental atten- tion to a wide range of ergonomic, radiation, chemical and stress hazards in many workplaces, leading to extensive regulation and the creation of the Occupational Safety and Health Administration and National Insti- tute of Occupational Safety and Health (Rosner and Markowitz 1987). Physicians have organised doctor-led organisations to press for healthcare

52 Phil Brown, Stephen Zavestoski, Sabrina McCormick

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© Blackwell Publishing Ltd/Editorial Board 2004

for the underserved, to seek a national health plan, and to oppose the nuclear arms race (McCally unpublished).

The above examples demonstrate not only how activism around health issues has been very important in social change, but also show the extent of social science research on these movements. But researchers studying HSMs typically have not adopted social movement perspectives; in fact, much of the research on HSMs has not been conducted by sociologists. Further, social movement scholars have paid little attention to health-related move- ments. Hence, we offer a theoretical conceptualisation of what we term health social movements, and focus on one subset of these movements, Embodied Health Movements, to demonstrate how our theoretical approach can be applied.

Drawing on Della Porta and Diani’s (1999) definition of social movements as ‘informal networks based on shared beliefs and solidarity which mobilize around conflictual issues and deploy frequent and varying forms of protest’, we define HSMs as collective challenges to medical policy and politics, belief systems, research and practice that include an array of formal and informal organisations, supporters, networks of co-operation, and media. HSMs’ challenges are to political power, professional authority and personal and collective identity. HSMs, as a class of social movements, are centrally organised around health, and address issues including the following general categories: (a) access to, or provision of, health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexual- ity; and/or (c) disease, illness experience, disability and contested illness.

Based on these categories, we developed a preliminary typology of HSMs. This model represents ideal types of HSM; however, the goals and activities of some HSMs may fit into more than one of these categories. The model is aimed at beginning the process of analytically exploring a wide range of movements that deal with health rather than providing a definitive heuristic. Although there may be some outlying social movements that involve actors who deal with medical or health issues, we believe that this heuristic encom- passes the broad majority of HSMs. We first define each sub-category of HSM, and then explain potential areas of overlap.

Health Access Move- ments

seek equitable access to healthcare and improved provision of health- care services. These include movements such as those seeking national healthcare reform, increased ability to pick specialists, and extension of health insurance to uninsured people.

Embodied health movements

(EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. EHMs include ‘contested illnesses’ that are either unexplained by current medical knowledge or have purported environmental explanations that are often disputed. As a result, these groups organise to achieve medical recognition, treatment and/or research

1

. Additionally, some established EHMs may include constituents who are not ill, but who perceive themselves as vulnerable to the disease; many environmental breast cancer activists fit this characterisation, in

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joining other women who do have the disease. Among these movements are the breast cancer movement, the AIDS movement and the tobacco control movement.

Constituency-based health movements

address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. They include the women’s health movement, gay and lesbian health movement and environmental justice movement.

The categories of our typology are ideal types. The range of organisa- tional agendas within any movement will not always fit neatly into each category, and there is often overlap with other categories. For example, the women’s health movement can be seen as a constituency-based movement, but at the same time it contains elements of both access HSMs (

e.g.

in seeking more services for women) and embodied HSMs (

e.g.

in challenging assumptions about psychiatric diagnoses for premenstrual symptoms). Nev- ertheless, by virtue of having a large categorical constituency, the women’s health movement directly raises issues of sex differences and gender discrim- ination, and also represents a large population with specific interests; thus the constituency nature is significant. For another example, environmental justice organisations typically centre their actions on their own illnesses or their fear of becoming ill. At the same time, they address the disproportion- ate burden of polluting facilities and health effects in communities of colour. As a result, these environmental justice organisations share features of both embodied health and constituency-based health movements.

There are also important differences within social movements concerned with health. Within any given movement, organisations vary by their goals and strategies. We feel this diversity is best summarised by a strategy and agenda continuum. At one end of the continuum are advocacy-oriented social movement organisations. By advocacy, we mean groups that work within the existing system and biomedical model, use tactics other than direct, disruptive action (

e.g.

education), and tend not to push for lay know- ledge to be inserted into expert knowledge systems. At the other end of the continuum, activist-oriented groups engage in direct action, challenge cur- rent scientific and medical paradigms, and pursue democratic participa- tion in scientific or policy knowledge production by working largely outside the system.

Further, there can be embodied movements where adherents have a strong critique of the dominant science, but rather than working to produce alternate science (with or without professional allies), they reject scientific explanations. Some radical elements of the ‘psychiatric survivors’ movement have this characteristic; they resist traditional psychiatry, eschew reform approaches and oppose the very idea that they have (or have had) mental illness. What is key about the embodied nature of this movement, however, is that activists frame their organising efforts and critique of the system through a personal awareness and understanding of their experience.

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We view EHMs as organised efforts to challenge knowledge and practice concerning the aetiology, treatment, and prevention of disease. This arises from the recent trend towards the empowerment of patients and more active involvement in their healthcare. At the same time, we are seeing growing numbers of unexplained illnesses and illnesses with purported environ- mental causes. As such diseases tend to result in the mobilisation of disease groups (Brown

et al.

2003, McCormick

et al.

, in press), a better under- standing of these groups is essential.

Our approach to understanding EHMs derives from our broader project that studies three distinct conditions and the movements involving them: asthma, breast cancer (with a specific focus on the environmental breast cancer movement), and Gulf War illnesses. Details on the data, methods, and findings regarding this ongoing project can be found elsewhere (Bown

et al.

2001, 2003, McCormick in press). We begin by describing the characteristics of EHMs. We then discuss the importance of illness expe- rience in the development of collective identity in EHMs. Drawing on our concept of a ‘politicized collective illness identity’ and ‘oppositional con- sciousness’ (Groch 1994, Mansbridge and Morris 2001), we explain how EHMs represent ‘boundary movements’. In pushing the limits of what is defined as normal scientific practice, and in bridging previous social move- ments, EHMs represent hybrid movements that blur the boundaries between lay and expert forms of knowledge, and between activists and the state. EHMs also represent boundary movements to the extent that they are the outcome of social movement spillover (Meyer and Whittier 1994) – the influence of previous movement outcomes on strategies, goals and framings. We demonstrate the usefulness of these concepts to the study of EHMs by applying them to the case of the environmental breast cancer movement.

Characterising embodied health movements

EHMs are defined by three characteristics. Though many other types of social movements have one or even two of these characteristics, EHMs are unique in possessing all three. First, they introduce the biological body to social movements in central ways, especially in terms of the embodied experience of people who have the disease. The influence of the experience of embodiment on social movement formation and strategising can also be seen in the disability rights movement (Silvers

et al.

1998, Fleischer and Zames 2001) and women’s health movements (Morgen 2002)

2

. Second, EHMs typically include challenges to existing medical /scientific knowledge and practice. Such challenges also characterise the environmental movement, anti-nuclear movements, and other movements, though as we discuss below, such challenges are not tied to the other embodied characteristics. Third, EHMs often involve activists collaborating with scientists and health

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professionals in pursuing treatment, prevention, research and expanded funding. While the simultaneous possession of these three characteristics makes EHMs somewhat unique, they are nevertheless much like other social movements in that they depend on the emergence of a collective identity as a mobilising force. In the case of illness, people’s first approach is to work within existing social institutions

3

. When these institutions of science and medicine fail to offer disease accounts that are consistent with individuals’ experiences of illness, or when science and medicine offer accounts of disease that individuals are unwilling to accept, people may adopt an identity as an aggrieved illness sufferer, and even progress to collective action.

Recent directions in social movement scholarship emphasise the personal, lived experience of social movement activists, as stated eloquently by Morgen (2002):

Too often the stories of social movements are told without enough attention to what the experience of being part of that movement meant to and felt like to those who participated in the movement. I don’t believe we can understand the agency of political actors without recognizing that politics is lived, believed, felt, and acted all at once. Incorporating the experience of social movement involvement into analysis and theories about social movements may be difficult, but it adds a great deal to what we can learn about politics, social transformation, and political subjectivities (2002: 230).

A similar approach is found in the very title of Goodwin, Jasper, and Polleta’s (2001) book,

Passionate Politics: Emotions and Social Movements

. This emphasis on the transformation of personal experiences into coll- ective action opens up many new vistas in social movement theory. Our focus on embodied health movements meshes with this interest, since participants in such movements have arrived at their activism through a direct, felt experience of illness. Their identities are often shaped by these experiences.

Such an identity emerges first and foremost out of the biological disease process happening inside the person’s body. The body is often also implic- ated in other social movements, especially identity-based movements. But these are typically movements that emerge because a particular ascribed identity causes a group of people to experience their bodies through the lens of social stigma and discrimination. Such is the case with the women’s movement and lesbian and gay rights movement. With EHMs, on the other hand, the disease process happening within the body results in the development of a particular disease identity (which may or may not be stigmatised). This identity represents the intersection of social construc- tions of illness and the personal illness experience of a biological disease process.

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The significance of this embodied experience lies in how it constrains the options available to a movement once mobilised. Illness sufferers can work either within or against their target, in this case the system of the production and application of scientific and medical knowledge. They are less free, depending on the severity of their condition, simply to exit the system. Though some illness sufferers seek alternative or complementary therapies, many others either need or seek immediate care and are forced to pursue solutions within the system they perceive as failing their health needs. Most importantly, people who have the disease have the unique experience of living with the disease process, its personal illness experience, its interper- sonal effects, and its social ramification. Their friends and family, who may also engage in collective action, share some of the same experiences. These personal experiences give people with the disease or condition a lived per- spective that is unavailable to others. It also lends moral credibility to the mobilised group in the public sphere and scientific world.

Challenges to existing medical /scientific knowledge and practice are a second unique characteristic of EHMs, whether working within or challeng- ing the system. Activists seek scientific support for their illness claims, and hence EHMs become inextricably linked to the production of scientific knowledge and to changes in practice. Just as EHMs are not the only move- ments that involve the physical body, they also are not the only movements to confront science and scientific knowledge and practice. Environmental groups, for example, often confront scientific justifications for risk man- agement strategies, endangered species determination, global warming or resource use by drawing on their own scientific evidence for alternative courses of action. Many environmental disputes, however, can also centre on nature and the value placed on it by opposing interests. In these cases, some environmental groups can abandon scientific arguments – appealing instead, for example, to the public’s desire to protect open spaces for psychological or spiritual reasons, or to preserve resources for enjoyment by future gen- erations. However, what sets EHMs apart from other movements is less

that

they challenge science, but

how

they go about doing it. EHM activists often judge science based on intimate, firsthand knowledge of their bodies and illness.

Furthermore, many EHM activists must simultaneously challenge and collaborate with science. EHM activists do not typically have the luxury of ignoring the science. While they may appeal to people’s sense of justice or shared values, they nevertheless remain dependent to a large extent upon scientific understanding and continued innovation if they hope to receive effective treatment and eventually recover

4

. As Epstein (1996) points out, when little was known about AIDS, activists had to engage the scientific enterprise in order to spur medicine and government to act quickly enough, and with adequate knowledge. Even EHMs that focus on already under- stood and treatable diseases are dependent upon science. Although they may not have to push for more research, they typically must point to scientific

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evidence of causation in order to demand public policies for prevention. For example, asthma activists who demand better transportation planning for inner cities and who seek better quality affordable housing, do so knowing that the scientific evidence linking outdoor and indoor air quality to asthma attacks supports them (Loh and Sugerman-Brozan 2002).

EHMs’ dependence on science leads us to a third characteristic – activist collaboration with scientists and health professionals in pursuing treat- ment, prevention, research and expanded funding. Lay activists in EHMs strive to gain a place at the scientific table so that their personal illness experiences can help shape research design, as Epstein (1996) points out in his study of AIDS activists. Even if activists do not get to participate in the research enterprise, they often realise that their movement’s success will be defined in terms of scientific advances, or in terms of transformation of scientific processes. Part of the dispute over science involves a disease group’s dependence on medical and scientific allies to help them press for increased funding for research, and to raise money to enable them to run support groups and get insurance coverage. The more scientists can testify to those needs, the stronger patients’ and advocates’ claims are. The above points indicate that science is an inextricable part of EHMs, thus placing them in a fundamentally different relationship to science than other movements.

On first glance, these three characteristics we focus on may not appear relevant to some health-related social movements. For example, the tobacco control movement may appear vastly different from the environmental breast cancer movement in terms of personal experience of illness, chal- lenges to science, and collaboration with science. But a closer look at this movement shows that it is centred on the health concerns of smokers and their families and friends, and the movement started with intense health testimony from sufferers and their loved ones. It was also rooted in non- smokers’ grievances about the health effects of second-hand smoke. For example, a loosely organised group of organisations, GASP (Groups Against Smokers’ Pollution), pushed for clean air policies at the state and national level (Wolfson 2001). Further, this movement challenged science for failing adequately to pursue its finding on primary tobacco use, and for failing to take on secondary smoke hazards, in a timely fashion. Moreover, this movement collaborates with science in the way it pushes science to take up alternative approaches to secondary smoke. Even before there was a strong scientific foundation for that research, the activists had made a logical extrapolation from primary to secondary exposure, and they knew they had to pressure science to pursue this. Indeed, one of the common features of EHMs is that they often initiate scientific directions in advance of medical science. The tobacco control movement also blurs several boundaries, as reflected in Wolfson’s (2001) concept of state-movement interpenetration, in that it comprises single-issue groups, health voluntaries, state agencies, healthcare professionals and healthcare organisations.

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Considering traditional approaches to social movements

Four approaches to social movements provide important, but partial insight into EHMs and inform our approach: resource mobilisation, political opportunities, cultural framing and new social movement theory.

Resource mobilisation theory focuses on social movement organisations (SMOs) as rational responses to defined goals (Jenkins 1983, McCarthy and Zald 1977), and theorises that SMOs evolve from social movements through inevitable processes such as institutionalisation and bureaucratisation (McAdam

et al.

1996). By drawing on utilitarian principles and emphasising rational action, this model downplays the importance of grievance, a factor we hypothesise is central to the formation of EHMs and their related movement organisations. Although studying SMOs and their development is an important part of looking at EHMs, we need an explanatory framework not only for SMO professionalisation, but also for movement emergence more generally.

The political opportunity approach identifies opportunities, constraints and their influence on movement emergence and activity (McAdam 1982, McAdam

et al.

1996, Tilly 1978), and offers some useful insights into EHMs. As political networks change, allies among sympathetic political parties and government agencies may emerge where previously none existed (McAdam 1982, McAdam

et al.

2001, Tilly 1978). To a certain extent AIDS activism was feasible in ligh

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