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Keywords:

  • social movements;
  • health activism;
  • breast cancer

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

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.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

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 Industrial 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 professionals’ 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 disabilities (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 attention 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 Institute of Occupational Safety and Health (Rosner and Markowitz 1987). Physicians have organised doctor-led organisations to press for healthcare 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 movements. 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 sexuality; 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 encompasses the broad majority of HSMs. We first define each sub-category of HSM, and then explain potential areas of overlap. Health Access Movements 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 research1. 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 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 organisational 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). Nevertheless, by virtue of having a large categorical constituency, the women's health movement directly raises issues of sex differences and gender discrimination, 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 disproportionate 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 knowledge to be inserted into expert knowledge systems. At the other end of the continuum, activist-oriented groups engage in direct action, challenge current scientific and medical paradigms, and pursue democratic participation 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.

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 environmental causes. As such diseases tend to result in the mobilisation of disease groups (Brown et al. 2003, McCormick et al., in press), a better understanding 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 experience in the development of collective identity in EHMs. Drawing on our concept of a ‘politicized collective illness identity’ and ‘oppositional consciousness’ (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 movements, 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

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

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 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 institutions3. 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 collective 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 implicated 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 constructions of illness and the personal illness experience of a biological disease process.

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 interpersonal 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 perspective 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 challenging 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 movements 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 management 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 generations. 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 recover4. 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 understood and treatable diseases are dependent upon science. Although they may not have to push for more research, they typically must point to scientific 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 treatment, 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, challenges 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.

Considering traditional approaches to social movements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

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 light of more favourable opportunities for gay rights activism. Political opportunities can also shape movement outcomes. This is true for Gulf War illnesses where veterans struggled for years to get the government to acknowledge that chemical and biological weapons had been present. The eventual uncovering of evidence that thousands of soldiers had been exposed created opportunities to appeal for increased funding for research and compensation.

However, the utility of the political opportunity model has limits. It views social movements as functions of political opportunities and constraints such as changes in political climate, shifting political alignments, economic changes and the presence of other social movements. EHMs are strongly rooted in the illness experience and the exigency of health demands. They tend to emerge when individuals who are unable to meet their health expectations realise a shared experience and pursue collective action. Healthcare needs are immediate. Those with ill health and/or limited access to needed medical services do not have the luxury of waiting for ripe political opportunities before mobilising, and they often organise despite political constraints. Furthermore, by emphasising change in science and medicine, EHMs focus contention against arenas other than state and political bodies. While some EHMs do target the state, others have a unique relationship vis-à-vis the state. For example, some target the overall state through allying with components of the state, such as working with the EPA to obtain stronger air particulate regulation. Others do not challenge the state at all, and instead focus on such non-state targets as scientific organisations and medical institutions, challenging for example, the pharmaceutical firm AstraZeneca on promotion and direct advertising of preventive use of Tamoxifen.

The frame alignment perspective offers a way to understand the interpretive, attributional and social constructive processes of social movements. Social movement actors identify problems, define solutions, motivate action and set action agendas in ways that resonate with the personal experiences, values and expectations of potential constituents (Benford and Snow 2000, Snow et al. 1986). In this way, EHMs align the illness experience of potential constituents with the illness experience defined by the movement. Within an affected population however, framing is vital in transforming the illness experience from a personal trouble to a social problem, but such frame alignment strategies are initially viable only among those who are illness sufferers and their allies.

Once SMOs have been formed, they are often successful at recruiting followers and supporters who do not have the particular condition that defines the organisation. This is evident in the breast cancer movement, which comprises not only survivors, friends, relatives and/or care-givers, but also people who participate in activities such as the Avon Breast Cancer Walk/Run or pink ribbon campaigns. Though most scholars employ frame alignment to address movement participants’ restructuring of grievances and values, the perspective can be extended to address the cognitive and social-structural framing of scientific knowledge (Krogman 1996, Shibley and Prosterman 1998, Shriver et al. 1998). Despite its utility, however, some scholars suggest that the framing literature has been far too cognitive, initially side-stepping the role of emotions in rendering frames salient in the first place (Benford 1997, Benford and Snow 2000, Goodwin et al. 2001).

New social movement (NSM) theory focuses on a category of social movements that includes the peace, environmental and feminist movements. NSM theorists have attempted to understand social movements that are not well explained by traditional models. We share a similar goal, and agree that there may be useful concepts or interpretive tools. For example, NSM theory brings culture to the fore and offers a robust discussion of contested knowledge; we find this aspect of NSM theory useful. NSM theory, however, offers an incomplete framework for the analysis of EHMs because it argues that social class is less significant in post-industrial societies (Fitzgerald and Rodgers 2000). In fact, class remains a salient feature of many, though not all, movements around health, and any approach that seeks to understand these movements must consider class and social structure. Our research on asthma activism, for example, shows that poor, inner-city communities of Blacks and Latinos play a dominant role in organising around asthma, and they integrate their organising with efforts to address a host of class-based issues in housing, transportation and economic development (Brown et al. 2003).

In summary, the four approaches to social movements do not adequately account for the importance of class on access to health care or health outcomes, the role of illness experience and grievance as an impetus for collective action, and mobilisation that occurs despite ripe political opportunities because of the immediacy of health concerns. Finally, these approaches have focused on social movements with primarily state targets, or on those that seek the provision of rights or distribution of resources through policy change. We follow McAdam et al.'s (1996) call to integrate the three dominant approaches (resource mobilisation, political opportunity, and framing). The resource mobilisation perspective allows us to view knowledge, experience and networks (Cress and Snow 1996) as vital resources to be mobilised by EHMs. Illness activists are likely to appeal to sympathetic scientists who can perform the necessary research to generate knowledge about an illness. But no matter how sympathetic scientists are to an illness group, research requires substantial funding. The political opportunity perspective helps explain EHM processes. Some EHMs, for example, might capitalise on political opportunities that emerge when public awareness of an illness pushes legislation to fund research. Others are forced to raise awareness so that constituents will create that pressure. The ability to do so rests on the salience and resonance of their framing processes, best understood by seeing the importance of emotions and grievance.

Politicised collective illness identity

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

The centrality of the biological body in EHMs suggests a basic mechanism of mobilisation: collective identity. We draw on the substantial body of work on collective identity (Poletta and Jasper 2001) and oppositional consciousness (Groch 1994, Mansbridge and Morris 2001) to arrive at what we term ‘politicised collective illness identity’. Poletta and Jasper define collective identity as ‘an individual's cognitive, moral, and emotional connection with a broader community. It is a perception of a shared status or relation, which may be imagined rather than experienced directly, and it is distinct from personal identities, although it may form part of a personal identity’ (2001: 285). Illness identity, on the other hand, is the individual sense of oneself shaped by the physical constraints of illness and by others’ social reactions to that illness (Charmaz 1991). When individuals, through the illness identity acquired as a result of their illness condition, develop a ‘cognitive, moral, and emotional connection’ with other illness sufferers, a collective illness identity emerges.

A collective illness identity alone may be sufficient to form a support group or a self-help group. But for a politicised collective illness identity to form, the collective illness identity must be linked to a broader social critique that views structural inequalities and the uneven distribution of social power as responsible for the causes and/or triggers of the disease. Such a critique also places responsibility for treating and preventing the disease (e.g. the potential impact of toxic substances, the failure of government to reduce toxic exposures) on social institutions instead of individuals. In short, a politicised collective illness identity begins the process of transforming a personal trouble into a social problem. At this stage, people with the disease no longer focus primarily on treatment access, support groups and expanded research, but on seeking structural explanations and the requisite structural changes. In this latter development, people without the disease can be part of the collective identity, either because they are friends or relatives of someone with the disease, or because they have reason to fear they will get the disease in the future. This latter stage clearly offers the potential of a larger critical mass.

Part of what causes individuals with illness to begin experiencing a politicised collective illness identity is their common experience within government, medical and scientific institutions that create what we have described elsewhere as a ‘dominant epidemiological paradigm’ (Brown et al. 2001). The dominant epidemiological paradigm is the codification of beliefs about disease and its causation by science, government and the private sector. It includes established institutions entrusted with the diagnosis, treatment and care of disease sufferers, as well as journals, media, universities, medical philanthropies and government officials. There are many structures and institutions that contribute to a generally accepted view of disease, but people do not immediately see them. Furthermore, the dominant epidemiological paradigm is both a model and a process. It is a model in that it helps us understand the complexity of disease discovery. It is a process in that it delineates a variety of locations of action. Actors can enter the dominant epidemiological paradigm process at different locations, and take action on one or more of the components.

The pre-existing institutional beliefs and practices that shape the discovery and understanding of a disease also shape the illness experience for the affected population. As individuals experiencing illness enter into formal healthcare systems, these institutions shape their perceptions of the disease. For example, in the case of Multiple Chemical Sensitivity (MCS), few mainstream medical professionals will offer a MCS diagnosis. As a result, individuals who believe they have MCS become frustrated with the medical system, find themselves in court challenging insurance companies who deny them coverage, and develop personal strategies for minimising reactions and managing symptoms (Kroll-Smith and Floyd 1997). Through a shared illness experience incommensurate with the dominant epidemiological paradigm's account of the disease, some individuals with MCS have politicised their collective illness identity to mobilise communication and support networks to assist one another in getting well and in challenging medical professionals who will not, or cannot, provide care5. When disease groups experience their conditions in ways that contradict scientific and medical explanations, and these contradictions are identified as a source of inequality, a politicised collective illness identity may emerge.

Our notion of politicised collective illness identity can be mapped onto another concept, oppositional consciousness (Groch 1994, Mansbridge and Morris 2001). It reflects a ‘state of mind’ that binds members of a group against dominant ways of thinking (in this case, the dominant epidemiological paradigm) by attributing problems and grievance to structural factors. Through the lived experience as subordinate to dominant groups and/or ideas, oppositional consciousness often develops when people view group-based inequalities as structural and unjust, and decide collective action is the best means to address perceived injustice (Mansbridge and Morris 2001). It is through the development of an oppositional consciousness that aggrieved people with an illness politicise their collective illness identity.

For most movements, collective identity tends to be a function of shared grievances and an oppositional consciousness that may result from discrimination, structural dislocation or shared values. All of these influences can be important in the development of a politicised collective illness identity, but so too are the known or imputed organic disease processes. Poorly defined or understood diseases might result in a disease group feeling uniformly neglected by the medical system. But developing a politicised collective illness identity is a challenge, since without a disease definition or an official diagnosis sufferers are left to make sense of their own illness experience. In the case of multiple chemical sensitivity, a politicised collective illness identity eventually emerged, despite the lack of a formal diagnosis, because sufferers came uniformly to experience their symptoms as related to chemical exposures.

In some cases, social movement spillover (Meyer and Whittier 1994) enables disease groups to make connections between their collective illness experience and some form of inequality. For example, environmental justice activists have influenced asthma activists to view asthma as related to unequal racial exposure to air pollution and toxic substances. As Meyer and Whittier (1995: 281–2) explain, ‘taken together, one movement can influence subsequent movements both from outside and from within: by altering the political and cultural conditions it confronts in the external environment, and by changing the individuals, groups, and norms within the movement itself’. Further, the notion of spillover captures the variety of outcomes movements can have, and moves beyond the notion that social movement successes are measured simply by impacts on the state. Such a conceptualisation is ideally suited to EHMs, which are hybrid movements in which the collective identities, tactics, styles of leadership and organisational structures of previous movements intersect with a disease's powerful effect on the body. Hybrid movements that benefit from social movement spillover transcend traditional conceptions of social movements and their attendant organisations. By observing the spillover EHMs experience, and by understanding these movements as hybrid movements that merge individuals, cultures and strategies of various movements, we can add one final piece to the conceptual puzzle – the notion of boundary movements. This observation also returns us to the second and third characteristics of EHMs as discussed above.

Embodied health movements as boundary movements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

Blurring the boundaries between social movements is just one example of how EHMs represent what we call boundary movements. We adapt several concepts to explain EHMs as boundary movements: Star and Greisemer's (1989) ‘boundary objects’ and Gieryn's (1983) conception of ‘boundary work’. Borrowed from the social studies of science, the term boundary work describes the efforts of scientists and lay people to distinguish good science from bad science (Gieryn 1983). This process occurs not within science but in science's relationship to the public and the state, in an attempt to secure authority and material resources. Gieryn argues that this demarcation effort is not based on a positivistic certainty of truth, but is variable and based on different kinds of proof and certainty, depending on what the issue is. Another strategy EHM actors may use to defy boundaries is to lever and/or create boundary objects (Star and Greisemer 1989) – objects that overlap different social worlds and are malleable enough to be used by different parties. Boundary objects, such as a DNA sequence that determines disease predisposition, can serve scientists who capitalise on the discovery to justify funding for additional studies. But they can also benefit EHM activists who may lever the DNA sequence to acquire political resources for research funding, or to recruit additional members who, through genetic screening, learn they might be predisposed to the disease.

EHMs, because they so often depend on challenging medical and scientific knowledge and practice, constantly engage in boundary work and utilise boundary objects. Consequently, they can be thought of as boundary movements in four different ways. First, they attempt to reconstruct the lines that demarcate science from non-science, as well as lines demarcating good science from bad science. Environmental health activists, for example, have pointed to flaws and shortcomings in cumulative exposure effects, have urged the study of synergistic effects of combined chemical exposure (as opposed to individual chemicals), and have opposed the widespread notion that a detection process (mammography) can be a form of prevention. By pushing science in new directions, or by participating in scientific processes as a means of bringing previously unaddressed issues and concerns to the clinical and bench scientists, EHMs are aimed at pushing the boundaries of science. Much of the work of EHMs involves boundary objects, either creating them or utilising them. For example, a particular scientific method may serve as a boundary object that an EHM can employ in order to produce scientific data to help scientists, but also to empower movement followers.

There is a second sense in which EHMs manifest our notion of boundary movements. In reconstructing the lines that demarcate science from non-science, and good science from bad science, EHMs blur the boundary between experts and lay people. Some EHM activists informally become experts by using the Internet and other resources to arm themselves with medical and scientific knowledge that can be employed in conflicts with their medical care providers. Others gain a more legitimate form of expertise by working with scientists and medical experts to gain a better level of understanding of the science underlying their disease. Through this process, boundary movements gain power and authority by obscuring the boundary between expert and lay person. In some cases, rather than just blur the boundary, activists redefine or even eliminate it, as with the National Breast Cancer Coalition's Project LEAD that helps activists become versed in the policy and scientific literature so that they can serve on peer review panels (Dickersin et al. 2001). Some EHM organisations have evolved beyond ‘lay’ organisations, since they deal so much with science and contend with the world of science. They become a hybrid through this process of breaking down long-existing boundaries.

EHMs are boundary movements in a third sense: they transcend the usual limits (i.e. boundaries) of social movement activity. They do this by moving fluidly between lay and expert identities (Epstein 1996), as described above, through what Ray (1999) calls ‘fields of movements’. This conceptualisation also allows us to abandon traditional dichotomies between movement insiders and outsiders, and between lay and expert forms of knowledge. In a related fashion, Klawiter's (1999) notion of ‘cultures of action’ encourages us to look beyond strict conceptualisations of activists in order to include all actors in the movement field. As a result, the actions of state officials, scientists and others who may not typically be thought of as within a movement, can be understood in light of the culture of action in which the movement takes place. Activists’ fluidity allows them to move in and out of social movement organisations, as noted above in our discussion of ‘spillover’.

But more than just spill over across social movements, EHMs cross boundaries with non-social movement institutions. Wolfson (2001) showed this in his analysis of ‘interpenetration’, whereby tobacco control activists allied in varying combinations with health voluntary organisations and government units. Hence, rather than distinct entities, EHMs are savvy social actors moving between social worlds. Additionally, this approach redefines who activists are. Through their fluid movement between lay and expert worlds of knowledge, individuals within the scientific institutions that are being challenged often play activist roles themselves as what Krimsky (2000: 151) terms ‘advocacy scientists’. Similarly, activists often take up the challenge of science and policy worlds, moving to become trained in those areas and hence to act in other arenas. The examples we give here are not limited to EHMs, since other recent movements act in similar fashion, especially environmental movements. But they are very prominent features of many, if not all, EHMs, thus making them important features for our analysis.

The use of boundary objects is a fourth characteristic of boundary movements. As mentioned earlier, these are objects that overlap different social worlds and are malleable enough to be used by different parties. For example, the Boston environmental justice organisation, Alternatives for Community and Environment (ACE) pressured state and federal environmental agencies to install an air monitor on their roof. The monitor is a boundary object that crosses several social worlds: it is a symbol of ACE's political effectiveness; it is a teaching and community organising device; and it is a scientific tool for research by ACE and public health researchers.

By conceptualising EHMs as boundary movements, and by emphasising the way in which EHM mobilisation occurs through the channelling of an oppositional consciousness into a politicised collective illness identity and the spillover from other social movements, we move towards a reformulation of social movement organisations, activists and activities. In using the concept of boundary objects from the social studies of science, the concept of illness experience from the sociology of health and illness, and the concepts of spillover, collective identity, oppositional consciousness, ‘fields of movement’ and ‘cultures of action’ from social movements theory, we demonstrate the hybrid nature of the analytical approach to EHMs we are proposing. Understanding EHMs mandates that we cross disciplinary boundaries and fluidly merge conceptual contributions from multiple fields. In doing so, our aim is to systematise an approach for examining EHMs that might eventually suggest new and useful ways to examine the growing number of these embodied health movements, health social movements more generally, and other social movements as well.

The environmental breast cancer movement as an exemplary embodied health movement

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

In this section, we draw on our research of the environmental breast cancer movement (EBCM) in order to illustrate how the conceptual framework we have constructed for understanding EHMs can be applied (McCormick et al., in press). This is based on semi-structured interviews (37) with activists and scientists in Long Island, New York, the San Francisco Bay Area and Massachusetts. We selected these locations because they were the only sites in the US in which the environmental breast cancer movement has taken place in organised settings. A site was operationalised by the existence of multiple activist organisations promoting increased public and scientific awareness of environmental causes of breast cancer and citizen/science alliances between these activists and scientists. Such scientists were interviewed in addition to activists. The sample was collected by selecting participants based on their involvement in the movement, and partially through a snowball method. People who spanned the entire period of time during which the movement had been forming were selected, along with representatives from various organisations involved. This provided a comprehensive picture of the experiences within each location, as well as the national picture. Ethnographic observations (11) were conducted to supplement the interviews, primarily at Silent Spring Institute in Newton, MA, the nation's only centre for research into environmental causes of breast cancer. These included public meetings where the researchers presented their work and their larger perspective, scientific review panel meetings and science/activist conferences. Unreferenced extracts and data come from these interviews and observations.

The broader breast cancer movement has addressed issues of care for breast cancer patients, knowledge about treatment options, especially in regard to mastectomies, lumpectomies and radiation, support for those affected by the disease and increased research funding. National Breast Cancer Awareness Month, including fundraising walks and runs, involve tens of thousands of people every year. The movement's other successes include the production of a breast cancer stamp, whose additional cost above normal postage is given to governmental research institutions to sponsor breast cancer research, and the Shop for the Cure campaign, where merchants and credit card companies give a portion of the proceeds to breast cancer foundations. The general breast cancer movement's success can also be seen in the amount of breast cancer research dollars, which have increased from $90 million in 1990 to $600 million in 1999, and in the ability to win federal legislation, such as the Breast and Cervical Cancer Treatment Act of 2000 (Brenner 2000, Reiss and Martin 2000).

Since the early 1990s, the environmental breast cancer movement has reframed the successes of the broader breast cancer movement. Activists believe that for years people took for granted the ‘mammography is the best form of prevention’ position of the American Cancer Society, National Cancer Institute and other parts of what activists term the ‘cancer establishment’. Environmental breast cancer activists argue that once a tumour is detected prevention has failed since the tumour now exists. This stance is assisted by the growing scientific awareness that mammography is not very effective in women under 50. Activists also challenge the corporate control of Breast Cancer Awareness Month. They have additionally mounted a campaign to have breast cancer stamp revenues shifted to the National Institute of Environmental Health Sciences from the National Cancer Institute, where research on environmental factors is not supported (Brenner 2000).

These activists were motivated by the lack of evidence for breast cancer causes and by the potential link to environmental contaminants. Their concern with environmental factors developed when women noticed higher than average rates of breast cancer cases in several geographic areas around the country – Long Island, New York, the San Francisco Bay Area, and Massachusetts. The EBCM grew out of these three locations into a successful, national-level movement. It has worked towards four main goals: (1) to broaden public awareness of potential environmental causes of breast cancer; (2) to increase research into environmental causes of breast cancer; (3) to create policy which could prevent environmental causes of breast cancer; and (4) to increase activist participation in research. Efforts by these activists have resulted in major federal and state funding for research into environmental causes of breast cancer.

The centrality of the body and the formation of a politicised collective illness experience

The centrality of the body to breast cancer activism has resulted in a politicised collective illness experience. Activists criticise the limitations of the biomedical model, which they believe treats disease as a discrete entity occupying the body, and the body as a discrete entity separate from the person occupying it (Freund, McGuire and Podhurst 2003). Objectification of the body with breast cancer can best be seen in the past practice of anaesthetising a woman to perform a biopsy, and then, while still under anaesthesia, performing a radical mastectomy on the malignant tumour without consent. The mainstream breast cancer movement succeeded in 1983 in passing informed consent legislation that gave women the option to choose their preferred treatment. Despite the physical disease process, women with breast cancer embody their illness and all its social implications. Indeed, individuals with any disease typically have a bodily experience of the disease that differs from medical understanding of the disease; this is the classic distinction between disease and illness (Eisenberg 1977). A central tenet of the breast cancer movement, derived in part from the women's health movement that preceded it, has been the inadequacy of the male orientation of the medical profession to understand a breast cancer illness experience that is deeply rooted in being a woman.

The body is central to the breast cancer movement; it is the objectified body upon which medical experts gaze, and it is the same body whose socially constructed meaning shapes the experience of the woman with breast cancer. The breast cancer movement, then, attempts to introduce the subjective illness experience as an important part of treating women with breast cancer. One strategy for doing this has been the disease narrative. Disease narratives interweave organic disease processes with a bodily experience that is a function of social structures and cultural ways of knowing. Disease narratives have been powerful tools for women with breast cancer (Potts 2000, Rosenbaum and Roos 2000).

While these points about the centrality of the body can apply to some perspectives of the broader breast cancer movement, with environmental breast cancer activism women's disease narratives have taken on a broader challenge to science, politics and business. Sandra Steingraber's influential book, Living Downstream: A Scientist's Personal Investigation of Cancer and the Environment (1998), illustrates such an approach by integrating values with science and personal experience. Steingraber literally brings the body back into breast cancer research by learning the identity of the previously anonymous woman whose oestrogen-receptive MFC-7 cell line has been so widely used in research. ‘Whose breasts did [the cells] come from and what was her fate?’, asks Steingraber (1998: 121). Identifying this woman is in sharp contrast to pharmaceutical firm Myriad's literal ownership of a patent on BRCA-1 for research purposes.

The environmental breast cancer movement relies on the body in constructing a politicised collective illness identity in two additional ways. First, it criticises medical objectification of the female body, and its treatment of women's breasts as objects of research independent of the women's bodies and their locations in toxic environments. This is evident in an activist's remark that the link between the environment and breast cancer is ‘sentinel’ in terms of women's health and that it reminds people ‘that reproduction occurs in the context of a wider world’. The criticism is also captured in the following statement made by a scientist who argued that researchers need to ‘start to think about the biological processes happening in the breast in relationship to the world in which the woman is walking who happens to have those breasts so that there's not just this disembodied breast that's hanging out somewhere’.

Second, the environmental breast cancer movement frames the bodily experience of breast cancer as linked to a social structure that exposes women's bodies to unequal environmental burdens. It does this, for example, by criticising the mainstream movement's focus on treatment. Though environmental breast cancer activists acknowledge the importance of treatment research, they contend that prevention ought to be the main priority. Silent Spring Institute (SSI), for example, focuses solely on prevention. They believe that this focus on prevention can push other breast cancer researchers to begin asking questions about whether there is something about women's lives in modern consumer societies that increases susceptibility to breast cancer. For instance, environmental breast cancer activists question the use of oestrogen, a suspected cause of breast cancer, in hormone replacement therapy. At SSI, researchers are attempting to document and investigate the chemicals women are exposed to on a daily basis; this includes characterising a number of chemicals that have never before been studied as hormonally active agents. Through these and other strategies, environmental breast cancer activists transform the individual illness experience into a politicised collective illness identity.

Social movement spillover and boundary movements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

The environmental breast cancer movement also reflects how important social movement spillover is to EHMs. Spillover of knowledge and network resources from the women's health movement, AIDS activism and the toxic waste and environmental movements was vital to the development of a politicised collective illness identity of women with breast cancer. Many early breast cancer activists drew from their experience in the women's movement to ask whether their disease was another instance of gender inequality. Likewise, many women who participated in the AIDS movement gained experience in demanding that drug companies open up their clinical trials and in pushing for more government funding of AIDS research. This experience spilled over into the breast cancer movement (Brenner 2000). Additionally, the toxic waste and environmental movements increased societal awareness of the health effects of environmental hazards. Without such awareness, environmental breast cancer activists might not have developed a politicised collective illness identity grounded in addressing the hazardous by-products of industrial activity. To understand this greater awareness, we can look at how much of the resource mobilisation literature talks about financial resources. Cress and Snow (1996) expanded the concept of resources to include knowledge and networks that some of the important resources movements mobilise. Social movement spillover reflects this idea of knowledge and network resources.

Once the politicised collective illness identity has developed, forms of movement organisation and strategising, representative of what we have termed boundary movements, follow. One characteristic of boundary movements is that they blur the boundary between experts and lay people. Such a blurring can be seen in the work of SSI, whose mission specifies the expectation that activists and scientists work together to develop research and to educate the public about environmental causes of breast cancer. In addition, with both scientific experts and paid activists on its staff, SSI represents a blurring of the boundaries between lay and expert knowledge (Silent Spring Institute 1998). SSI staff also use boundary objects. For example, they use the practice of dry cleaning (and its attendant chemicals) both to produce scientific knowledge about a possible environmental factor in breast cancer, and to politicise breast cancer as a disease that subjects women, on the basis of their gender status and gender roles, to unequal risks of toxic chemicals.

Silent Spring Institute also demonstrates how boundary movements transcend definitions of traditional social movements, another way in which we describe embodied health movements as boundary movements. SSI is a scientific organisation that views itself as part of a social movement. It was established as a research organisation by the Massachusetts Breast Cancer Coalition, with a mission to merge activism and science and to encourage lay-professional collaboration. Activist and lay input is built into the institutional structure of SSI. That is, SSI has structured input channels at all levels of the research process to ensure lay participation is not overshadowed by scientists’ knowledge. In addition to lay participation on the Institute's Board of Directors, SSI has established a Public Advisory Committee through which members of the public and researchers meet to discuss ongoing research projects. Members of the Public Advisory Committee meet separately from a second committee, the Science Advisory Committee, a panel comprised of nationally-recognised scientists who consult on methodology and overall Institute functioning. SSI has the research teams meet with other advisory committees separately so that activists have an open forum to raise concerns and push the research in new directions. The group believes that this organisational environment fosters novel thinking because the activists generate solutions unconstrained by dominant scientific research paradigms or methodologies. SSI also includes the public presentation of hypotheses, data and analysis to lay audiences as part of its mission (Silent Spring Institute 2002).

Challenges to science and approaches to activist involvement in research

Studies of environmental factors have played a pivotal role in science and policy for their methodological innovation, as well as their ground-breaking implementation of public involvement in research processes through citizen-science alliances, lay-professional collaborations in which citizens and scientists work together on issues identified by lay people. These citizen-science alliances change scientific norms by valuing the embodied knowledge of illness-sufferers. This is reflected in the attitudes of scientists who have worked in citizen-science alliances and, as a result, respect and value contributions of lay people in a new way. The lay-science collaboration and boundary movement components of the EBCM are well illustrated by the way that Silent Spring Institute, which we may think of as an ‘institutionalized citizen-science alliance’, involves women with breast cancer not just as subjects in the scientific process, but as co-creators of scientific knowledge.

While studies of environmental causation of breast cancer have created, and continue to create, conflicting results, Silent Spring Institute believes it is crucial to pursue this line of work:

While journalistic reports have recently implied that scientific evidence has established that environmental pollutants are unrelated to breast cancer risk, a review of research in this area reveals a much different picture of major knowledge gaps, difficult challenges in research design, and contrasting bodies of evidence from toxicological and epidemiological studies (Brody and Rudell 2003: 1016).

From the perspective of these activists and scientists:

Given the relatively modest relative risks associated with the recognized breast cancer risk factors, an integrated research agenda for study of environmental pollutants in both laboratory and human settings has great potential. Even if the relative risks of environmental factors are modest, discovery of a risk that can be modified would save thousands of lives (Brody and Rudell 2003: 1017).

The EBCM has used this research platform to advance its larger agenda – the regulation of production and disposal processes. In this vein, EBCM activists have been among the core advocates of the Precautionary Principle, which shifts the burden of proof for health effects of chemical exposures from the consumers to the producers, and argues that chemicals should be proven safe before distribution and use (Raffensperger and Tickner 1999, Tickner 2003). The EBCM approach also emphasises the role of political action in publicising the socially constructed nature of illness and its causation, instead of the traditional focus on the biomedical model. EBCM activists attempt to move beyond the traditional biomedical assumptions, which in the case of breast cancer means shifting the focus of research from lifestyle and genetic factors to environmental aetiologies and the effects of unregulated industrial processes (Brenner 2000, Myhre 2001).

A varied repertoire

The above sections illustrate two major features of the EBCM's varied repertoire – challenges to science and politicised collective illness experience. In addition, that repertoire is filled out by how the movement frames breast cancer in terms of corporate power and ideology. EBCM activists argue that ‘The impression today is that breast cancer is a growth industry, with Race for the Cure runs and walks in most major US cities, the constant entry of new drugs and clinical trials to combat the disease, whole bookshelves devoted to the topic at local bookstores, and a cornucopia of tee-shirts, hats, pins, and pink ribbons’ (Ferguson and Kasper 2000). They believe that many corporations are getting good public relations out of donations to breast cancer efforts and have even named breast cancer a ‘dream cause’ because it is ‘the feminist issue without the politics’. Activists point out that Imperial Chemical Industries, the parent company of Zeneca (later merged with Astra to become AstraZeneca), invented Breast Cancer Awareness Month and retains authority to approve or disapprove all printed materials used by participating groups. Tying the political economy critique together with their belief in environmental causation, activists point out that AstraZeneca at the same time produces pesticides and herbicides that may be causing breast cancer (Zones 2000).

Our case study of the environmental breast cancer movement provides a capsule view into a movement that cannot be fully explained by traditional social movement theory, but that begs for a new synthesis of concepts. The movement's multilevel successes include increased public awareness, growth in research funds, shifts in types of research, challenges to corporate power and government policy, and the development of citizen-science alliances. This social movement developed as a boundary movement that crossed the lines of a number of other social movements. This case study suggests that other embodied health movements will have a similar boundary-crossing nature. Sociologists will need to be more flexible in defining a social movement and examining its development by looking at many facets: political challenges to governmental authority, scientific challenges to medicine and science, organisational challenges to health charities, contention for power and authority among various organisations within a movement, cultural manifestations and activities to increase public awareness.

Conclusion and suggestions for future research

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

Why health social movements have become so important

Health has emerged as a singularly powerful frame for many grievances. Our analysis leads us to ask why health social movements appear to be so significant at present. To a certain extent, the answer lies in our introductory comments: so many health movements have occurred, and have played major roles throughout society. Yet there is also something else to say about this – there is indeed a greater awareness of health issues over the last two decades.

One piece of this puzzle is precisely the success of key health social movements. The women's health movement is perhaps the premier such movement. Women's grassroots efforts have helped to transfer power from the ‘medical establishment’ to women (Morgen 2002). They have demanded more federal research dollars for women's health issues. And, they have increased women's access to health information, as evidenced by the wide availability of literature on women's health issues, or by the mandatory distribution of information about contra-indications and side-effects of prescription drugs. Women's health activists have also pushed for more access to demedicalised birth, under women's control. There are more women, and women of colour, practicing medicine and attending medical schools. These activists have also raised attention to differential health outcomes, access and other issues specifically affecting communities of colour. Given their experience as a socially excluded group, women have therefore been involved in broader democratisation efforts. As Morgen (2002) summarises: ‘To date, the Women's Health Movement succeeded in demonstrating that improvement in women's health care depends not just on technological advances in medicine, but on social politics and practices that eradicate poverty, sexism, racism, homophobia and other forms of discrimination and injustice’ (2002: 237). Upon seeing the successes of the women's health movement, other groups could easily decide that they could also organise for their health concerns.

Just as health activists spread their democratisation efforts to other social sectors, so too do other political organising sectors take up health concerns. Environmentalists, following Rachel Carson in the 1960s and Love Canal in the late 1970s, took up environmental health issues, transforming much of the environmental movement from a sole concern with conservation and preservation, to matters encompassing human health. Civil rights activists used the notorious Tuskegee syphilis experiment to demonstrate the way that the health system promoted racism. Environmental justice activists expanded on this civil rights framework to make environmental health a central concern. Housing activists took up the health concerns that are related to poor housing conditions, especially asthma. In all these settings, health movements became linked to an overall social movement society.

Health social movements also feed off the growing public awareness of and involvement in health issues. In this age of information massive amounts of health information can be found on the Internet, adding to an already impressive spread of popular books and magazines on health, diet and fitness. Newspapers feature health writers whose job is to translate and convey health information to their readers. Health consciousness has taken up struggles against targets that were previously seen as untouchable, most notably tobacco. In the US there is also growing sentiment that our expensive health care system, that consumes some 15 per cent of GDP, fails adequately to serve our needs. Complaints about the huge uninsured population, failure to treat the new mysterious chronic multisystem diseases and dissatisfaction with the growing impersonal nature of managed care settings have led to much general distrust of the health care system. This provides grounds for engaging in social movement activity, or at least for supporting others who do so.

Applications and directions for future research

We do not propose that our approach is necessarily a thorough new approach to social movements. We do, however, think our approach represents a unique way of looking at certain types of movement. Through our characterisation of EHMs we hope to provide a way to conceptualise social movements that will allow social movement scholars to examine social movements and social movement organisations that previously may not have been defined as such. At the same time, our approach may help broaden the perspectives of health scholars who have not been using social movement theory when they examine health social movements (embodied ones, or otherwise).

There are three components of the uniqueness of our approach. First is our synthesis of elements from various social movement theories, including some of the newer approaches such as collective identity and emotions. Second is the particular focus on health as an arena of social movement mobilisation, an area heretofore not part of the typical social movement scholarship, as well as an area that health scholars have not thought to systematise. Third is the incorporation of other sociological perspectives, especially the concepts of boundary work and boundary objects from science studies. Our use of the notion of boundary movements provides a new way to conceptualise what constitutes movements, and who their actors are, and allows us to observe the hybridity and fluidity of EHMs.

Having offered a set of concepts for more systematically observing EHMs, we now turn to some of the predictions these concepts allow us to make about EHMs, and to questions that further conceptual development should aim to answer. First, our approach to EHMs suggests that illnesses characterised by diffuse symptoms, such as chronic fatigue syndrome, multiple chemical sensitivity, and fibromyalgia, are less likely to see the emergence of strong EHMs than medically accepted diseases such as asthma and breast cancer. In these cases, a politicised collective illness identity is more difficult to develop. When a condition has no name, or a name that does not receive medical legitimacy, the formation of illness identities, and thus a politicised identity, is constrained. Also, even if people with such a condition succeed in developing a politicised collective illness identity, they have a much more difficult time generating scientific knowledge. For poorly defined diseases, more knowledge is needed than in the case of relatively well-understood diseases such as asthma. Finally, without some formal recognition from scientific and medical professionals, the gatekeepers of government money are not likely to perceive a need for funding research. Political processes, therefore, thwart opportunities that would otherwise assist in securing funds and the production of scientific knowledge.

Second, our conceptual framework for the study of EHMs suggests that illnesses with no link to previous social movements will have more difficulty mobilising than those with clear links. This is a result of social movement spillover and its role in framing the illness experience in politicised terms. Gulf War veterans, for example, drew from the experiences of Vietnam veterans, who were denied compensation for Agent Orange exposure, in order to frame their own symptoms as a form of injustice. On the other hand, conditions such as Parkinson's or Alzheimer's disease have no clear link to previous social movements. This may help explain why these two disease groups are poorly mobilised, and why they emphasise awareness campaigns and resource advocacy within the mainstream medical system, rather than challenging dominant perspectives or seeking democratic participation in the research enterprise.

Third, our approach to EHMs highlights the importance of considering the race, class and gender of an affected population on mobilisation. Those who are least likely to receive adequate treatment from the mainstream medical system, namely minorities and women, are also most likely to view their illness in terms of previous injustices. But they also may be least likely to have access to the resources necessary to transform their politicised collective illness identity into an efficacious social movement.

Fourth, the sheer number of people experiencing a disease should translate into broader public awareness and greater mobilisation. Asthma and breast cancer are two clear examples of this. Many people either have these diseases, or know people who do, thus making them more public. Numerical superiority, however, will not guarantee equal success to all embodied health movements, due to class and race differences in resources, as well as severity.

These hypotheses are just a beginning. Other interesting questions, whose answers will require further development of our conceptual framework, are likely to surface and should be addressed. These questions might include: What are the historical antecedents to the increase in challenges to science and medical practice? What are the characteristics of illness sufferers, other than income and level of education, that make them more or less successful at building alliances with scientific and medical experts? Does a substantial body of pre-existing scientific knowledge help or hinder movement mobilisation? How does co-operation between lay people and professionals affect movement outcomes? How will a rapidly ageing population, such as that of the US, shape the future of EHMs? And, how do EHMs differ from other sub-types of health social movements?

As the above questions are answered, we should also look for ways to employ this approach to the study of other social movements. Studies of the environmental movement are perhaps the most logical to examine in light of our new approach. While some social movement scholarship has analysed the environmental movement, the movement has not received sufficient attention. Even with respect to the recent focus on the environmental justice movement, with its emphasis on human health and inequalities, social movement scholarship has had little to say. For example, most work on the environmental justice movement draws on its use of discourse around the topic of justice as a master frame (Taylor 2000). While such approaches offer compelling explanations for the mobilisation, rapid growth and successes of the environmental justice movement, they overlook the importance of immediate health issues in making the justice frame salient. Many of the points we have made about EHMs may be relevant to the environmental movement. Environmental sociologists, for example, have addressed the problem of contaminated communities by explaining how conflicts emerge between ecological realities (e.g. contamination), and a community's attachment of symbolic meaning to the contamination (Couch and Kroll-Smith 1994, Kroll-Smith and Couch 1991). Drawing on the framework we have laid out for understanding EHMs, community contamination can be viewed in terms of a more fundamental conflict between biological bodies and the social meaning of illness.

We also see potential for the approach we have proposed to inform non-health social movements, especially those movements concerned with scientific knowledge. For example, scholars who study social movements concerned with science issues that are not directly related to health might be examining social movements around natural resources, energy, genetically modified organisms and hydroelectric dams. In all these cases, activists cross boundaries with scientists, are compelled to learn science in order to advance their movements, and eventually seek and even obtain seats at the table to make decisions based on science. David Hess (2002) addresses this in his notion of ‘technology-oriented social movements’, including organic foods, nutritional therapeutics, renewable energy, recycling and human-centred transportation. Moreover, many identity-driven movements aim to remove the stigma of an identity by producing scientific knowledge that normalises the identity. These types of movement differ from EHMs in that people's experience of illness is not involved, but the boundary movement nature is still significant, as is the import of lived experience and lay knowledge.

Our approach to understanding EHMs synthesises elements from a variety of social movement perspectives, and brings together material from multiple sub-fields of sociology. Our focus on the unique ways in which EHMs blur boundaries between lay and expert knowledge offers a new way of looking at health-related social movements.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References

This research is supported by grants to the first author from the Robert Wood Johnson Foundation's Investigator Awards in Health Policy Research Program (Grant #036273) and the National Science Foundation Program in Social Dimensions of Engineering, Science, and Technology (Grant # SES-9975518). We thank Meadow Linder, Theo Luebke, Joshua Mandelbaum and Pamela Webster for their part in the larger project from which this article arises. We thank Adele Clark and Steve Epstein for numerous discussions on these issues, and for their efforts to bring health social movement scholars together at the 2001 conference of the Society for the Social Study of Science. We are grateful to Peter Conrad, Steve Epstein, David Hess, Maren Klawiter, Jim Mahoney and Kelly Moore for their careful reading of the manuscript. We also thank participants at the Health Social Movements workshop at the August 2002 conference of the Collective Behavior and Social Movements section of the American Sociological Association for helpful comments.

Notes
  • 1

     Not all EHMs necessarily centre on grievances; some may primarily want support or more medical care. These EHMs are perhaps more widespread in the US than elsewhere, and our focus is primarily on those US movements.

  • 2

     Scholars working on the sociology of the body frequently discuss ‘embodiment’ as a key term. We do not address the many valuable contributions of this literature here, since we are only beginning the task of describing health social movements and their more focused form, embodied health movements. We hope to take up such concerns in the near future.

  • 3

     Here we are focusing on the institutions of science and medical practice that are shaped by the biomedical model of disease. Clearly the majority of ill health is managed without having to engage with these institutions. But because individuals who are able to address health concerns through family support, social networks or personal symptom management strategies are unlikely to mobilise around unmet health expectations, we focus on the individual's experience within formal healthcare systems where unmet health expectations can result in the sense of injustice that is more likely to lead to collective action.

  • 4

     This claim should be qualified since, as previously acknowledged, some illness sufferers do choose to leave the system of Western medical care by seeking alternative and complementary therapies. As this group of individuals represents a small minority of the ill who are seeking to restore their health, we choose to focus on the dependence on science that characterises those who turn to mainstream medical care providers.

  • 5

     Though we lack the space to discuss this here, EHMs tend to rely on the Internet as a mobilisation tool. The Internet has given patients unprecedented access to medical knowledge, and the ability to share that knowledge with one another through discussion lists and bulletin boards. As a result, individual illness experience can often be transformed into collective illness experience, and in turn collective identity.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Characterising embodied health movements
  5. Considering traditional approaches to social movements
  6. Politicised collective illness identity
  7. Embodied health movements as boundary movements
  8. The environmental breast cancer movement as an exemplary embodied health movement
  9. Social movement spillover and boundary movements
  10. Conclusion and suggestions for future research
  11. Acknowledgements
  12. References
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