Embodied Health Movements

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 healthPhil 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

New approaches to social movements in health 51

© Blackwell Publishing Ltd/Editorial Board 2004

Introduction

Social movements dealing with health are very important influences onour health care system, and a major force for change in the larger society.The first instances of social movements organising around health issuesdate at least back to concerns with occupational health during the Industr-ial Revolution. More recently, women’s health activists have greatly alteredmedical conceptions of women, broadened reproductive rights, expandedfunding 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 activistshave achieved expanded funding, greater medical recognition of alternativetreatment approaches and major shifts in how clinical trials are conducted(Epstein 1996). Mental patients’ rights activists have brought major shiftsin mental health care, including the provision of many civil rights thatused to be inferior to those of prisoners, and have achieved both the rightto better treatment and the right to refuse certain treatments (Brown 1984).

Citizens dealing with issues of general health access have fought againsthospital closures, struggled against curtailment of medical services andagainst restrictions by insurers and managed care organisations (Waitzkin2001). Self-care and alternative care activists have broadened health profes-sionals’ awareness of the capacity of laypeople actively to deal with theirhealth problems (Goldstein 1999). Disability rights activists have garneredmajor advances in public policy on disability rights such as accessibility andjob discrimination, while also countering stigma against people with disabil-ities (Shapiro 1993). Toxic waste activists have drawn national attention tothe health hazards of chemical, radiation and other hazards, helping shapethe development of the Superfund Program, obtain regulations and bans ontoxics, and remediate many hazardous sites (Brown and Mikkelsen 1990,Szasz 1994). Environmental justice activists, who are centrally concernedwith environmental health, have publicised the links between physical healthand social health, in the process proving health improvement and diseaseprevention require attention to, and reform of, a variety of social sectors,such as housing, transportation and economic development. This has led toa presidential Executive Order requiring all federal agencies to deal withenvironmental 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). Occupationalhealth and safety movements have brought medical and governmental atten-tion to a wide range of ergonomic, radiation, chemical and stress hazardsin many workplaces, leading to extensive regulation and the creation ofthe 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

et al.


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

The above examples demonstrate not only how activism around healthissues has been very important in social change, but also show the extent ofsocial science research on these movements. But researchers studying HSMstypically have not adopted social movement perspectives; in fact, much ofthe 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 termhealth social movements, and focus on one subset of these movements,Embodied Health Movements, to demonstrate how our theoretical approachcan be applied.

Drawing on Della Porta and Diani’s (1999) definition of social movementsas ‘informal networks based on shared beliefs and solidarity which mobilizearound conflictual issues and deploy frequent and varying forms of protest’,we define HSMs as collective challenges to medical policy and politics, beliefsystems, research and practice that include an array of formal and informalorganisations, supporters, networks of co-operation, and media. HSMs’challenges are to political power, professional authority and personal andcollective identity. HSMs, as a class of social movements, are centrallyorganised around health, and address issues including the following generalcategories: (a) access to, or provision of, health care services; (b) healthinequality 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 activitiesof some HSMs may fit into more than one of these categories. The model isaimed at beginning the process of analytically exploring a wide range ofmovements that deal with health rather than providing a definitive heuristic.Although there may be some outlying social movements that involve actorswho deal with medical or health issues, we believe that this heuristic encom-passes the broad majority of HSMs. We first define each sub-category ofHSM, 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 nationalhealthcare reform, increased ability to pick specialists, and extension ofhealth insurance to uninsured people.

Embodied health movements

(EHMs)address disease, disability or illness experience by challenging science onetiology, diagnosis, treatment and prevention. EHMs include ‘contestedillnesses’ that are either unexplained by current medical knowledge or havepurported environmental explanations that are often disputed. As a result,these groups organise to achieve medical recognition, treatment and/orresearch

1

. Additionally, some established EHMs may include constituentswho 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 arethe breast cancer movement, the AIDS movement and the tobacco controlmovement.

Constituency-based health movements

address health inequalityand health inequity based on race, ethnicity, gender, class and/or sexualitydifferences. These groups address disproportionate outcomes and oversightby the scientific community and/or weak science. They include the women’shealth movement, gay and lesbian health movement and environmentaljustice movement.

The categories of our typology are ideal types. The range of organisa-tional agendas within any movement will not always fit neatly into eachcategory, and there is often overlap with other categories. For example, thewomen’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.

inseeking more services for women) and embodied HSMs (

e.g.

in challengingassumptions about psychiatric diagnoses for premenstrual symptoms). Nev-ertheless, by virtue of having a large categorical constituency, the women’shealth movement directly raises issues of sex differences and gender discrim-ination, and also represents a large population with specific interests; thusthe constituency nature is significant. For another example, environmentaljustice organisations typically centre their actions on their own illnesses ortheir 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 bothembodied health and constituency-based health movements.

There are also important differences within social movements concernedwith health. Within any given movement, organisations vary by their goalsand strategies. We feel this diversity is best summarised by a strategy andagenda continuum. At one end of the continuum are advocacy-orientedsocial movement organisations. By advocacy, we mean groups that workwithin the existing system and biomedical model, use tactics other thandirect, 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 thecontinuum, 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 outsidethe system.

Further, there can be embodied movements where adherents have a strongcritique of the dominant science, but rather than working to producealternate science (with or without professional allies), they reject scientificexplanations. Some radical elements of the ‘psychiatric survivors’ movementhave this characteristic; they resist traditional psychiatry, eschew reformapproaches and oppose the very idea that they have (or have had) mentalillness. What is key about the embodied nature of this movement, however,is that activists frame their organising efforts and critique of the systemthrough a personal awareness and understanding of their experience.


et al.


We view EHMs as organised efforts to challenge knowledge and practiceconcerning the aetiology, treatment, and prevention of disease. This arisesfrom the recent trend towards the empowerment of patients and more activeinvolvement in their healthcare. At the same time, we are seeing growingnumbers of unexplained illnesses and illnesses with purported environ-mental causes. As such diseases tend to result in the mobilisation of diseasegroups (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 projectthat studies three distinct conditions and the movements involving them:asthma, breast cancer (with a specific focus on the environmental breastcancer 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 thecharacteristics of EHMs. We then discuss the importance of illness expe-rience in the development of collective identity in EHMs. Drawing on ourconcept of a ‘politicized collective illness identity’ and ‘oppositional con-sciousness’ (Groch 1994, Mansbridge and Morris 2001), we explain howEHMs represent ‘boundary movements’. In pushing the limits of what isdefined as normal scientific practice, and in bridging previous social move-ments, EHMs represent hybrid movements that blur the boundariesbetween lay and expert forms of knowledge, and between activists andthe state. EHMs also represent boundary movements to the extent thatthey are the outcome of social movement spillover (Meyer and Whittier1994) – the influence of previous movement outcomes on strategies, goalsand framings. We demonstrate the usefulness of these concepts to the studyof EHMs by applying them to the case of the environmental breast cancermovement.

Characterising embodied health movements

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

et al.

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

2

. Second,EHMs typically include challenges to existing medical /scientific knowledgeand 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 expandedfunding. While the simultaneous possession of these three characteristicsmakes EHMs somewhat unique, they are nevertheless much like othersocial movements in that they depend on the emergence of a collectiveidentity as a mobilising force. In the case of illness, people’s first approachis to work within existing social institutions

3

. When these institutions ofscience and medicine fail to offer disease accounts that are consistent withindividuals’ experiences of illness, or when science and medicine offeraccounts of disease that individuals are unwilling to accept, people mayadopt an identity as an aggrieved illness sufferer, and even progress tocollective action.

Recent directions in social movement scholarship emphasise the personal,lived experience of social movement activists, as stated eloquently byMorgen (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, andPolleta’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. Ourfocus on embodied health movements meshes with this interest, sinceparticipants in such movements have arrived at their activism through adirect, felt experience of illness. Their identities are often shaped by theseexperiences.

Such an identity emerges first and foremost out of the biological diseaseprocess happening inside the person’s body. The body is often also implic-ated in other social movements, especially identity-based movements. Butthese are typically movements that emerge because a particular ascribedidentity causes a group of people to experience their bodies through thelens of social stigma and discrimination. Such is the case with thewomen’s movement and lesbian and gay rights movement. With EHMs,on the other hand, the disease process happening within the body resultsin the development of a particular disease identity (which may or may notbe stigmatised). This identity represents the intersection of social construc-tions of illness and the personal illness experience of a biological diseaseprocess.


et al.


The significance of this embodied experience lies in how it constrains theoptions available to a movement once mobilised. Illness sufferers can workeither within or against their target, in this case the system of the productionand 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 pursuesolutions within the system they perceive as failing their health needs. Mostimportantly, people who have the disease have the unique experience ofliving with the disease process, its personal illness experience, its interper-sonal effects, and its social ramification. Their friends and family, who mayalso engage in collective action, share some of the same experiences. Thesepersonal experiences give people with the disease or condition a lived per-spective that is unavailable to others. It also lends moral credibility to themobilised group in the public sphere and scientific world.

Challenges to existing medical /scientific knowledge and practice are asecond unique characteristic of EHMs, whether working within or challeng-ing the system. Activists seek scientific support for their illness claims, andhence EHMs become inextricably linked to the production of scientificknowledge 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 movementsto confront science and scientific knowledge and practice. Environmentalgroups, for example, often confront scientific justifications for risk man-agement strategies, endangered species determination, global warming orresource use by drawing on their own scientific evidence for alternativecourses of action. Many environmental disputes, however, can also centre onnature and the value placed on it by opposing interests. In these cases, someenvironmental groups can abandon scientific arguments – appealing instead,for example, to the public’s desire to protect open spaces for psychologicalor 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 activistsoften judge science based on intimate, firsthand knowledge of their bodiesand illness.

Furthermore, many EHM activists must simultaneously challenge andcollaborate with science. EHM activists do not typically have the luxury ofignoring the science. While they may appeal to people’s sense of justice orshared values, they nevertheless remain dependent to a large extent uponscientific understanding and continued innovation if they hope to receiveeffective treatment and eventually recover

4

. As Epstein (1996) points out,when little was known about AIDS, activists had to engage the scientificenterprise 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 maynot have to push for more research, they typically must point to scientific



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

EHMs’ dependence on science leads us to a third characteristic – activistcollaboration with scientists and health professionals in pursuing treat-ment, prevention, research and expanded funding. Lay activists in EHMsstrive to gain a place at the scientific table so that their personal illnessexperiences can help shape research design, as Epstein (1996) points outin his study of AIDS activists. Even if activists do not get to participate inthe research enterprise, they often realise that their movement’s successwill be defined in terms of scientific advances, or in terms of transformationof scientific processes. Part of the dispute over science involves a diseasegroup’s dependence on medical and scientific allies to help them press forincreased funding for research, and to raise money to enable them to runsupport groups and get insurance coverage. The more scientists can testifyto those needs, the stronger patients’ and advocates’ claims are. The abovepoints indicate that science is an inextricable part of EHMs, thus placingthem in a fundamentally different relationship to science than othermovements.

On first glance, these three characteristics we focus on may not appearrelevant to some health-related social movements. For example, the tobaccocontrol movement may appear vastly different from the environmentalbreast cancer movement in terms of personal experience of illness, chal-lenges to science, and collaboration with science. But a closer look at thismovement shows that it is centred on the health concerns of smokers andtheir families and friends, and the movement started with intense healthtestimony from sufferers and their loved ones. It was also rooted in non-smokers’ grievances about the health effects of second-hand smoke. Forexample, a loosely organised group of organisations, GASP (Groups AgainstSmokers’ Pollution), pushed for clean air policies at the state and nationallevel (Wolfson 2001). Further, this movement challenged science for failingadequately to pursue its finding on primary tobacco use, and for failing totake on secondary smoke hazards, in a timely fashion. Moreover, thismovement collaborates with science in the way it pushes science to take upalternative approaches to secondary smoke. Even before there was a strongscientific foundation for that research, the activists had made a logicalextrapolation from primary to secondary exposure, and they knew they hadto pressure science to pursue this. Indeed, one of the common features ofEHMs is that they often initiate scientific directions in advance of medicalscience. The tobacco control movement also blurs several boundaries, asreflected in Wolfson’s (2001) concept of state-movement interpenetration, inthat it comprises single-issue groups, health voluntaries, state agencies,healthcare professionals and healthcare organisations.


et al.


Considering traditional approaches to social movements

Four approaches to social movements provide important, but partial insightinto EHMs and inform our approach: resource mobilisation, politicalopportunities, 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 andZald 1977), and theorises that SMOs evolve from social movements throughinevitable processes such as institutionalisation and bureaucratisation(McAdam

et al.

1996). By drawing on utilitarian principles and emphasisingrational action, this model downplays the importance of grievance, a factorwe hypothesise is central to the formation of EHMs and their relatedmovement organisations. Although studying SMOs and their development isan important part of looking at EHMs, we need an explanatory frameworknot only for SMO professionalisation, but also for movement emergencemore generally.

The political opportunity approach identifies opportunities, constraintsand 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 andgovernment agencies may emerge where previously none existed (McAdam1982, McAdam

et al.

2001, Tilly 1978). To a certain extent AIDS activismwas feasible in light of more favourable opportunities for gay rights activism.Political opportunities can also shape movement outcomes. This is true forGulf War illnesses where veterans struggled for years to get the governmentto acknowledge that chemical and biological weapons had been present.The eventual uncovering of evidence that thousands of soldiers had beenexposed created opportunities to appeal for increased funding for researchand compensation.

However, the utility of the political opportunity model has limits. It viewssocial movements as functions of political opportunities and constraintssuch as changes in political climate, shifting political alignments, economicchanges and the presence of other social movements. EHMs are stronglyrooted in the illness experience and the exigency of health demands. Theytend to emerge when individuals who are unable to meet their health expecta-tions realise a shared experience and pursue collective action. Healthcareneeds are immediate. Those with ill health and/or limited access to neededmedical services do not have the luxury of waiting for ripe political opport-unities before mobilising, and they often organise despite political con-straints. 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 relationshipvis-à-vis the state. For example, some target the overall state through allyingwith 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 andmedical institutions, challenging for example, the pharmaceutical firmAstraZeneca on promotion and direct advertising of preventive use ofTamoxifen.

The frame alignment perspective offers a way to understand the inter-pretive, attributional and social constructive processes of social movements.Social movement actors identify problems, define solutions, motivate actionand 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 potentialconstituents with the illness experience defined by the movement. Within anaffected population however, framing is vital in transforming the illnessexperience from a personal trouble to a social problem, but such framealignment strategies are initially viable only among those who are illnesssufferers and their allies.

Once SMOs have been formed, they are often successful at recruitingfollowers and supporters who do not have the particular condition thatdefines the organisation. This is evident in the breast cancer movement,which comprises not only survivors, friends, relatives and/or care-givers, butalso people who participate in activities such as the Avon Breast CancerWalk/Run or pink ribbon campaigns. Though most scholars employ framealignment to address movement participants’ restructuring of grievancesand values, the perspective can be extended to address the cognitive andsocial-structural framing of scientific knowledge (Krogman 1996, Shibleyand Prosterman 1998, Shriver

et al.

1998). Despite its utility, however, somescholars suggest that the framing literature has been far too cognitive, ini-tially side-stepping the role of emotions in rendering frames salient in thefirst 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 notwell explained by traditional models. We share a similar goal, and agree thatthere may be useful concepts or interpretive tools. For example, NSM theorybrings culture to the fore and offers a robust discussion of contested know-ledge; we find this aspect of NSM theory useful. NSM theory, however, offersan incomplete framework for the analysis of EHMs because it argues thatsocial class is less significant in post-industrial societies (Fitzgerald andRodgers 2000). In fact, class remains a salient feature of many, though not all,movements around health, and any approach that seeks to understand thesemovements must consider class and social structure. Our research on asthmaactivism, for example, shows that poor, inner-city communities of Blacksand Latinos play a dominant role in organising around asthma, and theyintegrate their organising with efforts to address a host of class-based issuesin housing, transportation and economic development (Brown

et al.

2003).


et al.


In summary, the four approaches to social movements do not adequatelyaccount for the importance of class on access to health care or health out-comes, the role of illness experience and grievance as an impetus for collect-ive action, and mobilisation that occurs despite ripe political opportunitiesbecause of the immediacy of health concerns. Finally, these approaches havefocused on social movements with primarily state targets, or on those thatseek the provision of rights or distribution of resources through policychange. We follow McAdam

et al.

’s (1996) call to integrate the three domin-ant approaches (resource mobilisation, political opportunity, and framing).The resource mobilisation perspective allows us to view knowledge, experi-ence and networks (Cress and Snow 1996) as vital resources to be mobilisedby EHMs. Illness activists are likely to appeal to sympathetic scientists whocan perform the necessary research to generate knowledge about an illness.But no matter how sympathetic scientists are to an illness group, researchrequires substantial funding. The political opportunity perspective helpsexplain EHM processes. Some EHMs, for example, might capitalise onpolitical opportunities that emerge when public awareness of an illnesspushes legislation to fund research. Others are forced to raise awareness sothat constituents will create that pressure. The ability to do so rests on thesalience and resonance of their framing processes, best understood by seeingthe importance of emotions and grievance.

Politicised collective illness identity

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

A collective illness identity alone may be sufficient to form a supportgroup or a self-help group. But for a

politicised

collective illness identity toform, the collective illness identity must be linked to a broader social cri-tique that views structural inequalities and the uneven distribution of socialpower 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 reducetoxic exposures) on social institutions instead of individuals. In short, a pol-iticised collective illness identity begins the process of transforming a personaltrouble into a social problem. At this stage, people with the disease no longerfocus primarily on treatment access, support groups and expanded research,but on seeking structural explanations and the requisite structural changes. Inthis latter development, people without the disease can be part of the collect-ive identity, either because they are friends or relatives of someone with thedisease, or because they have reason to fear they will get the disease in thefuture. This latter stage clearly offers the potential of a larger critical mass.

Part of what causes individuals with illness to begin experiencing a polit-icised collective illness identity is their common experience within govern-ment, medical and scientific institutions that create what we have describedelsewhere as a ‘dominant epidemiological paradigm’ (Brown

et al.

2001). Thedominant epidemiological paradigm is the codification of beliefs aboutdisease and its causation by science, government and the private sector. Itincludes established institutions entrusted with the diagnosis, treatmentand care of disease sufferers, as well as journals, media, universities, medicalphilanthropies and government officials. There are many structures andinstitutions that contribute to a generally accepted view of disease, butpeople do not immediately see them. Furthermore, the dominant epidemi-ological paradigm is both a model and a process. It is a model in that ithelps us understand the complexity of disease discovery. It is a process inthat it delineates a variety of locations of action. Actors can enter thedominant epidemiological paradigm process at different locations, and takeaction on one or more of the components.

The pre-existing institutional beliefs and practices that shape the dis-covery and understanding of a disease also shape the illness experience forthe affected population. As individuals experiencing illness enter into formalhealthcare systems, these institutions shape their perceptions of the disease.For example, in the case of Multiple Chemical Sensitivity (MCS), fewmainstream medical professionals will offer a MCS diagnosis. As a result,individuals who believe they have MCS become frustrated with the medicalsystem, find themselves in court challenging insurance companies who denythem coverage, and develop personal strategies for minimising reactionsand managing symptoms (Kroll-Smith and Floyd 1997). Through a sharedillness experience incommensurate with the dominant epidemiological para-digm’s account of the disease, some individuals with MCS have politicisedtheir collective illness identity to mobilise communication and supportnetworks to assist one another in getting well and in challenging medicalprofessionals who will not, or cannot, provide care

5

. When disease groupsexperience their conditions in ways that contradict scientific and medicalexplanations, and these contradictions are identified as a source of inequality,a politicised collective illness identity may emerge.


et al.


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

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

In some cases, social movement spillover (Meyer and Whittier 1994)enables disease groups to make connections between their collective illnessexperience and some form of inequality. For example, environmental justiceactivists have influenced asthma activists to view asthma as related tounequal racial exposure to air pollution and toxic substances. As Meyer andWhittier (1995: 281–2) explain, ‘taken together, one movement can influencesubsequent movements both from outside and from within: by altering thepolitical and cultural conditions it confronts in the external environment,and by changing the individuals, groups, and norms within the movementitself ’. Further, the notion of spillover captures the variety of outcomesmovements can have, and moves beyond the notion that social movementsuccesses are measured simply by impacts on the state. Such a conceptual-isation is ideally suited to EHMs, which are hybrid movements in which thecollective identities, tactics, styles of leadership and organisational struc-tures of previous movements intersect with a disease’s powerful effect onthe body. Hybrid movements that benefit from social movement spillovertranscend traditional conceptions of social movements and their attend-ant organisations. By observing the spillover EHMs experience, and byunderstanding these movements as hybrid movements that merge indi-viduals, cultures and strategies of various movements, we can add one finalpiece to the conceptual puzzle – the notion of boundary movements. This



observation also returns us to the second and third characteristics of EHMsas discussed above.

Embodied health movements as boundary movements

Blurring the boundaries between social movements is just one example ofhow EHMs represent what we call

boundary movements

. We adapt severalconcepts to explain EHMs as boundary movements: Star and Greisemer’s(1989) ‘boundary objects’ and Gieryn’s (1983) conception of ‘boundarywork’. Borrowed from the social studies of science, the term boundary workdescribes the efforts of scientists and lay people to distinguish good sciencefrom bad science (Gieryn 1983). This process occurs not within science butin science’s relationship to the public and the state, in an attempt to secureauthority and material resources. Gieryn argues that this demarcation effortis not based on a positivistic certainty of truth, but is variable and based ondifferent kinds of proof and certainty, depending on what the issue is.Another strategy EHM actors may use to defy boundaries is to lever and/orcreate boundary objects (Star and Greisemer 1989) – objects that overlapdifferent social worlds and are malleable enough to be used by differentparties. Boundary objects, such as a DNA sequence that determines diseasepredisposition, can serve scientists who capitalise on the discovery to justifyfunding for additional studies. But they can also benefit EHM activists whomay lever the DNA sequence to acquire political resources for researchfunding, 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 sci-entific knowledge and practice, constantly engage in boundary work andutilise boundary objects. Consequently, they can be thought of as boundarymovements in four different ways. First, they attempt to reconstruct the linesthat demarcate science from non-science, as well as lines demarcating goodscience from bad science. Environmental health activists, for example, havepointed to flaws and shortcomings in cumulative exposure effects, haveurged the study of synergistic effects of combined chemical exposure (asopposed to individual chemicals), and have opposed the widespread notionthat a detection process (mammography) can be a form of prevention. Bypushing science in new directions, or by participating in scientific processesas a means of bringing previously unaddressed issues and concerns to theclinical and bench scientists, EHMs are aimed at pushing the boundaries ofscience. Much of the work of EHMs involves boundary objects, either creat-ing them or utilising them. For example, a particular scientific method mayserve as a boundary object that an EHM can employ in order to produce scient-ific data to help scientists, but also to empower movement followers.

There is a second sense in which EHMs manifest our notion of bound-ary movements. In reconstructing the lines that demarcate science from


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non-science, and good science from bad science, EHMs blur the boundarybetween experts and lay people. Some EHM activists informally becomeexperts by using the Internet and other resources to arm themselves withmedical and scientific knowledge that can be employed in conflicts with theirmedical care providers. Others gain a more legitimate form of expertise byworking with scientists and medical experts to gain a better level of under-standing of the science underlying their disease. Through this process,boundary movements gain power and authority by obscuring the boundarybetween expert and lay person. In some cases, rather than just blur theboundary, activists redefine or even eliminate it, as with the National BreastCancer Coalition’s Project LEAD that helps activists become versed in thepolicy 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 theworld of science. They become a hybrid through this process of breakingdown long-existing boundaries.

EHMs are boundary movements in a third sense: they transcend the usuallimits (

i.e.

boundaries) of social movement activity. They do this by movingfluidly between lay and expert identities (Epstein 1996), as described above,through what Ray (1999) calls ‘fields of movements’. This conceptualisa-tion also allows us to abandon traditional dichotomies between movementinsiders and outsiders, and between lay and expert forms of knowledge. Ina related fashion, Klawiter’s (1999) notion of ‘cultures of action’ encouragesus to look beyond strict conceptualisations of activists in order to includeall 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 move-ment, can be understood in light of the culture of action in which the move-ment takes place. Activists’ fluidity allows them to move in and out of socialmovement organisations, as noted above in our discussion of ‘spillover’.

But more than just spill over across social movements, EHMs crossboundaries with non-social movement institutions. Wolfson (2001) showedthis in his analysis of ‘interpenetration’, whereby tobacco control activistsallied in varying combinations with health voluntary organisations andgovernment units. Hence, rather than distinct entities, EHMs are savvysocial actors moving between social worlds. Additionally, this approachredefines who activists are. Through their fluid movement between lay andexpert worlds of knowledge, individuals within the scientific institutionsthat are being challenged often play activist roles themselves as whatKrimsky (2000: 151) terms ‘advocacy scientists’. Similarly, activists often takeup the challenge of science and policy worlds, moving to become trained inthose areas and hence to act in other arenas. The examples we give hereare not limited to EHMs, since other recent movements act in similarfashion, especially environmental movements. But they are very prominentfeatures of many, if not all, EHMs, thus making them important featuresfor our analysis.



The use of boundary objects is a fourth characteristic of boundarymovements. As mentioned earlier, these are objects that overlap differentsocial worlds and are malleable enough to be used by different parties. Forexample, the Boston environmental justice organisation, Alternatives forCommunity and Environment (ACE) pressured state and federal environ-mental agencies to install an air monitor on their roof. The monitor is aboundary object that crosses several social worlds: it is a symbol of ACE’spolitical effectiveness; it is a teaching and community organising device; andit is a scientific tool for research by ACE and public health researchers.

By conceptualising EHMs as boundary movements, and by emphasisingthe way in which EHM mobilisation occurs through the channelling of anoppositional consciousness into a politicised collective illness identity andthe spillover from other social movements, we move towards a reformulationof social movement organisations, activists and activities. In using theconcept of boundary objects from the social studies of science, the conceptof illness experience from the sociology of health and illness, and the con-cepts of spillover, collective identity, oppositional consciousness, ‘fields ofmovement’ and ‘cultures of action’ from social movements theory, wedemonstrate the hybrid nature of the analytical approach to EHMs we areproposing. Understanding EHMs mandates that we cross disciplinaryboundaries and fluidly merge conceptual contributions from multiple fields.In doing so, our aim is to systematise an approach for examining EHMsthat might eventually suggest new and useful ways to examine the growingnumber of these embodied health movements, health social movementsmore generally, and other social movements as well.

The environmental breast cancer movement as an exemplary embodied health movement

In this section, we draw on our research of the environmental breast cancermovement (EBCM) in order to illustrate how the conceptual framework wehave constructed for understanding EHMs can be applied (McCormick

et al.

, in press). This is based on semi-structured interviews (37) with activistsand scientists in Long Island, New York, the San Francisco Bay Area andMassachusetts. We selected these locations because they were the only sites inthe US in which the environmental breast cancer movement has taken placein organised settings. A site was operationalised by the existence of multipleactivist organisations promoting increased public and scientific awareness ofenvironmental causes of breast cancer and citizen/science alliances betweenthese activists and scientists. Such scientists were interviewed in addition toactivists. The sample was collected by selecting participants based on theirinvolvement in the movement, and partially through a snowball method.People who spanned the entire period of time during which the movementhad been forming were selected, along with representatives from various


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organisations involved. This provided a comprehensive picture of the experi-ences within each location, as well as the national picture. Ethnographicobservations (11) were conducted to supplement the interviews, primarily atSilent Spring Institute in Newton, MA, the nation’s only centre for researchinto environmental causes of breast cancer. These included public meetingswhere the researchers presented their work and their larger perspective, sci-entific review panel meetings and science/activist conferences. Unreferencedextracts and data come from these interviews and observations.

The broader breast cancer movement has addressed issues of care forbreast cancer patients, knowledge about treatment options, especially inregard to mastectomies, lumpectomies and radiation, support for thoseaffected by the disease and increased research funding. National BreastCancer Awareness Month, including fundraising walks and runs, involvetens of thousands of people every year. The movement’s other successesinclude the production of a breast cancer stamp, whose additional costabove normal postage is given to governmental research institutions tosponsor breast cancer research, and the Shop for the Cure campaign, wheremerchants and credit card companies give a portion of the proceeds tobreast cancer foundations. The general breast cancer movement’s successcan also be seen in the amount of breast cancer research dollars, which haveincreased from $90 million in 1990 to $600 million in 1999, and in the abilityto win federal legislation, such as the

Breast and Cervical Cancer TreatmentAct 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. Activistsbelieve that for years people took for granted the ‘mammography is the bestform of prevention’ position of the American Cancer Society, NationalCancer Institute and other parts of what activists term the ‘cancer estab-lishment’. Environmental breast cancer activists argue that once a tumour isdetected prevention has failed since the tumour now exists. This stance isassisted by the growing scientific awareness that mammography is not veryeffective in women under 50. Activists also challenge the corporate controlof Breast Cancer Awareness Month. They have additionally mounted a cam-paign to have breast cancer stamp revenues shifted to the National Instituteof Environmental Health Sciences from the National Cancer Institute, whereresearch on environmental factors is not supported (Brenner 2000).

These activists were motivated by the lack of evidence for breast cancercauses and by the potential link to environmental contaminants. Theirconcern with environmental factors developed when women noticed higherthan average rates of breast cancer cases in several geographic areas aroundthe country – Long Island, New York, the San Francisco Bay Area, andMassachusetts. The EBCM grew out of these three locations into a success-ful, national-level movement. It has worked towards four main goals: (1) tobroaden 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 activistshave resulted in major federal and state funding for research into environ-mental 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 polit-icised collective illness experience. Activists criticise the limitations of thebiomedical model, which they believe treats disease as a discrete entity oc-cupying the body, and the body as a discrete entity separate from the personoccupying it (Freund, McGuire and Podhurst 2003). Objectification of thebody with breast cancer can best be seen in the past practice of anaesthetis-ing 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 passinginformed consent legislation that gave women the option to choose theirpreferred treatment. Despite the physical disease process, women with breastcancer embody their illness and all its social implications. Indeed, indi-viduals with any disease typically have a bodily experience of the diseasethat differs from medical understanding of the disease; this is the classicdistinction between disease and illness (Eisenberg 1977). A central tenet of thebreast cancer movement, derived in part from the women’s health movementthat preceded it, has been the inadequacy of the male orientation of themedical profession to understand a breast cancer illness experience that isdeeply rooted in being a woman.

The body is central to the breast cancer movement; it is the objectifiedbody upon which medical experts gaze, and it is the same body whosesocially constructed meaning shapes the experience of the woman withbreast cancer. The breast cancer movement, then, attempts to introduce thesubjective illness experience as an important part of treating women withbreast cancer. One strategy for doing this has been the disease narrative.Disease narratives interweave organic disease processes with a bodily experi-ence 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 someperspectives of the broader breast cancer movement, with environmentalbreast cancer activism women’s disease narratives have taken on a broaderchallenge to science, politics and business. Sandra Steingraber’s influentialbook,

Living Downstream: A Scientist’s Personal Investigation of Cancer andthe Environment

(1998), illustrates such an approach by integrating valueswith science and personal experience. Steingraber literally brings the bodyback into breast cancer research by learning the identity of the previouslyanonymous woman whose oestrogen-receptive MFC-7 cell line has been so


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widely used in research. ‘Whose breasts did [the cells] come from and whatwas her fate?’, asks Steingraber (1998: 121). Identifying this woman is insharp contrast to pharmaceutical firm Myriad’s literal ownership of apatent on BRCA-1 for research purposes.

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

Second, the environmental breast cancer movement frames the bodilyexperience of breast cancer as linked to a social structure that exposeswomen’s bodies to unequal environmental burdens. It does this, for example,by criticising the mainstream movement’s focus on treatment. Though envir-onmental breast cancer activists acknowledge the importance of treatmentresearch, they contend that prevention ought to be the main priority. SilentSpring Institute (SSI), for example, focuses solely on prevention. Theybelieve that this focus on prevention can push other breast cancer researchersto begin asking questions about whether there is something about women’slives in modern consumer societies that increases susceptibility to breastcancer. For instance, environmental breast cancer activists question the useof oestrogen, a suspected cause of breast cancer, in hormone replacementtherapy. At SSI, researchers are attempting to document and investigate thechemicals women are exposed to on a daily basis; this includes characteris-ing a number of chemicals that have never before been studied as hormon-ally active agents. Through these and other strategies, environmental breastcancer activists transform the individual illness experience into a politicisedcollective illness identity.

Social movement spillover and boundary movements

The environmental breast cancer movement also reflects how importantsocial movement spillover is to EHMs. Spillover of knowledge and networkresources from the women’s health movement, AIDS activism and thetoxic waste and environmental movements was vital to the development ofa politicised collective illness identity of women with breast cancer. Manyearly breast cancer activists drew from their experience in the women’smovement to ask whether their disease was another instance of genderinequality. Likewise, many women who participated in the AIDS movement



gained experience in demanding that drug companies open up their clinicaltrials and in pushing for more government funding of AIDS research. Thisexperience spilled over into the breast cancer movement (Brenner 2000).Additionally, the toxic waste and environmental movements increasedsocietal awareness of the health effects of environmental hazards. Without suchawareness, environmental breast cancer activists might not have developed apoliticised collective illness identity grounded in addressing the hazardousby-products of industrial activity. To understand this greater awareness,we can look at how much of the resource mobilisation literature talksabout financial resources. Cress and Snow (1996) expanded the concept ofresources to include knowledge and networks that some of the importantresources movements mobilise. Social movement spillover reflects this ideaof knowledge and network resources.

Once the politicised collective illness identity has developed, forms ofmovement organisation and strategising, representative of what we havetermed boundary movements, follow. One characteristic of boundary move-ments is that they blur the boundary between experts and lay people. Sucha blurring can be seen in the work of SSI, whose mission specifies the expec-tation that activists and scientists work together to develop research and toeducate the public about environmental causes of breast cancer. In addition,with both scientific experts and paid activists on its staff, SSI represents ablurring of the boundaries between lay and expert knowledge (Silent SpringInstitute 1998). SSI staff also use boundary objects. For example, they usethe practice of dry cleaning (and its attendant chemicals) both to producescientific knowledge about a possible environmental factor in breast cancer,and to politicise breast cancer as a disease that subjects women, on the basisof their gender status and gender roles, to unequal risks of toxic chemicals.

Silent Spring Institute also demonstrates how boundary movements trans-cend definitions of traditional social movements, another way in which wedescribe embodied health movements as boundary movements. SSI is ascientific organisation that views itself as part of a social movement. It wasestablished as a research organisation by the Massachusetts Breast CancerCoalition, with a mission to merge activism and science and to encourage lay-professional collaboration. Activist and lay input is built into the institu-tional structure of SSI. That is, SSI has structured input channels at all levelsof the research process to ensure lay participation is not overshadowed byscientists’ knowledge. In addition to lay participation on the Institute’sBoard of Directors, SSI has established a Public Advisory Committeethrough which members of the public and researchers meet to discuss ongo-ing research projects. Members of the Public Advisory Committee meet sep-arately from a second committee, the Science Advisory Committee, a panelcomprised of nationally-recognised scientists who consult on methodologyand overall Institute functioning. SSI has the research teams meet with otheradvisory committees separately so that activists have an open forum to raiseconcerns and push the research in new directions. The group believes that


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this organisational environment fosters novel thinking because the activistsgenerate solutions unconstrained by dominant scientific research paradigmsor methodologies. SSI also includes the public presentation of hypotheses,data and analysis to lay audiences as part of its mission (Silent Spring Insti-tute 2002).

Challenges to science and approaches to activist involvement in researchStudies of environmental factors have played a pivotal role in science andpolicy for their methodological innovation, as well as their ground-breakingimplementation of public involvement in research processes through citizen-science alliances, lay-professional collaborations in which citizens andscientists work together on issues identified by lay people. These citizen-science alliances change scientific norms by valuing the embodied know-ledge of illness-sufferers. This is reflected in the attitudes of scientists whohave worked in citizen-science alliances and, as a result, respect and valuecontributions of lay people in a new way. The lay-science collaborationand boundary movement components of the EBCM are well illustratedby the way that Silent Spring Institute, which we may think of as an ‘institu-tionalized citizen-science alliance’, involves women with breast cancernot just as subjects in the scientific process, but as co-creators of scientificknowledge.

While studies of environmental causation of breast cancer have created,and continue to create, conflicting results, Silent Spring Institute believes itis 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, EBCMactivists 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 beproven safe before distribution and use (Raffensperger and Tickner 1999,Tickner 2003). The EBCM approach also emphasises the role of politicalaction in publicising the socially constructed nature of illness and itscausation, instead of the traditional focus on the biomedical model. EBCMactivists attempt to move beyond the traditional biomedical assumptions,which in the case of breast cancer means shifting the focus of research fromlifestyle and genetic factors to environmental aetiologies and the effects ofunregulated industrial processes (Brenner 2000, Myhre 2001).

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

Our case study of the environmental breast cancer movement provides acapsule view into a movement that cannot be fully explained by traditionalsocial movement theory, but that begs for a new synthesis of concepts. Themovement’s multilevel successes include increased public awareness, growthin research funds, shifts in types of research, challenges to corporate powerand government policy, and the development of citizen-science alliances.This social movement developed as a boundary movement that crossed thelines of a number of other social movements. This case study suggests thatother embodied health movements will have a similar boundary-crossingnature. Sociologists will need to be more flexible in defining a social move-ment and examining its development by looking at many facets: politicalchallenges to governmental authority, scientific challenges to medicine andscience, organisational challenges to health charities, contention for powerand authority among various organisations within a movement, culturalmanifestations and activities to increase public awareness.

72 Phil Brown, Stephen Zavestoski, Sabrina McCormick et al.


Conclusion and suggestions for future research

Why health social movements have become so importantHealth has emerged as a singularly powerful frame for many grievances. Ouranalysis leads us to ask why health social movements appear to be sosignificant at present. To a certain extent, the answer lies in our introductorycomments: so many health movements have occurred, and have played majorroles 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 move-ments. The women’s health movement is perhaps the premier such move-ment. Women’s grassroots efforts have helped to transfer power from the‘medical establishment’ to women (Morgen 2002). They have demandedmore federal research dollars for women’s health issues. And, they haveincreased women’s access to health information, as evidenced by the wideavailability of literature on women’s health issues, or by the mandatorydistribution of information about contra-indications and side-effects of pre-scription drugs. Women’s health activists have also pushed for more accessto demedicalised birth, under women’s control. There are more women, andwomen of colour, practicing medicine and attending medical schools. Theseactivists have also raised attention to differential health outcomes, accessand other issues specifically affecting communities of colour. Given theirexperience as a socially excluded group, women have therefore been involvedin broader democratisation efforts. As Morgen (2002) summarises: ‘To date,the Women’s Health Movement succeeded in demonstrating that improve-ment in women’s health care depends not just on technological advances inmedicine, 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 groupscould easily decide that they could also organise for their health concerns.

Just as health activists spread their democratisation efforts to other socialsectors, so too do other political organising sectors take up health concerns.Environmentalists, following Rachel Carson in the 1960s and Love Canal inthe late 1970s, took up environmental health issues, transforming much ofthe environmental movement from a sole concern with conservation andpreservation, to matters encompassing human health. Civil rights activistsused the notorious Tuskegee syphilis experiment to demonstrate the waythat the health system promoted racism. Environmental justice activistsexpanded on this civil rights framework to make environmental health acentral concern. Housing activists took up the health concerns that arerelated 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 ofand involvement in health issues. In this age of information massive amounts



of health information can be found on the Internet, adding to an alreadyimpressive spread of popular books and magazines on health, diet andfitness. Newspapers feature health writers whose job is to translate and con-vey health information to their readers. Health consciousness has taken upstruggles against targets that were previously seen as untouchable, mostnotably tobacco. In the US there is also growing sentiment that our expens-ive health care system, that consumes some 15 per cent of GDP, failsadequately to serve our needs. Complaints about the huge uninsured popu-lation, failure to treat the new mysterious chronic multisystem diseases anddissatisfaction with the growing impersonal nature of managed care settingshave led to much general distrust of the health care system. This providesgrounds for engaging in social movement activity, or at least for supportingothers who do so.

Applications and directions for future researchWe do not propose that our approach is necessarily a thorough newapproach to social movements. We do, however, think our approach repres-ents a unique way of looking at certain types of movement. Through ourcharacterisation of EHMs we hope to provide a way to conceptualise socialmovements that will allow social movement scholars to examine socialmovements and social movement organisations that previously may not havebeen defined as such. At the same time, our approach may help broaden theperspectives of health scholars who have not been using social movementtheory when they examine health social movements (embodied ones, orotherwise).

There are three components of the uniqueness of our approach. First isour synthesis of elements from various social movement theories, includingsome of the newer approaches such as collective identity and emotions.Second is the particular focus on health as an arena of social movementmobilisation, an area heretofore not part of the typical social movementscholarship, as well as an area that health scholars have not thought tosystematise. Third is the incorporation of other sociological perspectives,especially the concepts of boundary work and boundary objects fromscience studies. Our use of the notion of boundary movements provides anew way to conceptualise what constitutes movements, and who their actorsare, 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 makeabout EHMs, and to questions that further conceptual development shouldaim to answer. First, our approach to EHMs suggests that illnesses char-acterised by diffuse symptoms, such as chronic fatigue syndrome, multiplechemical sensitivity, and fibromyalgia, are less likely to see the emergence ofstrong EHMs than medically accepted diseases such as asthma and breastcancer. In these cases, a politicised collective illness identity is more difficultto develop. When a condition has no name, or a name that does not receive



medical legitimacy, the formation of illness identities, and thus a politicisedidentity, is constrained. Also, even if people with such a condition succeedin developing a politicised collective illness identity, they have a much moredifficult time generating scientific knowledge. For poorly defined diseases,more knowledge is needed than in the case of relatively well-understooddiseases such as asthma. Finally, without some formal recognition fromscientific and medical professionals, the gatekeepers of government moneyare not likely to perceive a need for funding research. Political processes,therefore, thwart opportunities that would otherwise assist in securing fundsand the production of scientific knowledge.

Second, our conceptual framework for the study of EHMs suggests thatillnesses with no link to previous social movements will have more difficultymobilising than those with clear links. This is a result of social movementspillover and its role in framing the illness experience in politicised terms.Gulf War veterans, for example, drew from the experiences of Vietnam vet-erans, who were denied compensation for Agent Orange exposure, in orderto 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 toprevious social movements. This may help explain why these two diseasegroups are poorly mobilised, and why they emphasise awareness campaignsand resource advocacy within the mainstream medical system, rather thanchallenging dominant perspectives or seeking democratic participation inthe research enterprise.

Third, our approach to EHMs highlights the importance of consideringthe race, class and gender of an affected population on mobilisation. Thosewho are least likely to receive adequate treatment from the mainstreammedical system, namely minorities and women, are also most likely to viewtheir illness in terms of previous injustices. But they also may be least likelyto have access to the resources necessary to transform their politicised col-lective illness identity into an efficacious social movement.

Fourth, the sheer number of people experiencing a disease should trans-late into broader public awareness and greater mobilisation. Asthma andbreast cancer are two clear examples of this. Many people either have thesediseases, or know people who do, thus making them more public. Numericalsuperiority, however, will not guarantee equal success to all embodied healthmovements, due to class and race differences in resources, as well as severity.

These hypotheses are just a beginning. Other interesting questions, whoseanswers will require further development of our conceptual framework, arelikely to surface and should be addressed. These questions might include:What are the historical antecedents to the increase in challenges to scienceand medical practice? What are the characteristics of illness sufferers, otherthan income and level of education, that make them more or less successfulat building alliances with scientific and medical experts? Does a substantialbody of pre-existing scientific knowledge help or hinder movement mobil-isation? How does co-operation between lay people and professionals affect



movement outcomes? How will a rapidly ageing population, such as that ofthe US, shape the future of EHMs? And, how do EHMs differ from othersub-types of health social movements?

As the above questions are answered, we should also look for ways toemploy this approach to the study of other social movements. Studies of theenvironmental movement are perhaps the most logical to examine in light ofour new approach. While some social movement scholarship has analysedthe environmental movement, the movement has not received sufficientattention. Even with respect to the recent focus on the environmental justicemovement, with its emphasis on human health and inequalities, socialmovement scholarship has had little to say. For example, most work on theenvironmental justice movement draws on its use of discourse around the topicof justice as a master frame (Taylor 2000). While such approaches offercompelling explanations for the mobilisation, rapid growth and successes ofthe environmental justice movement, they overlook the importance of imme-diate health issues in making the justice frame salient. Many of the pointswe have made about EHMs may be relevant to the environmental move-ment. Environmental sociologists, for example, have addressed the problemof contaminated communities by explaining how conflicts emerge betweenecological realities (e.g. contamination), and a community’s attachment ofsymbolic meaning to the contamination (Couch and Kroll-Smith 1994,Kroll-Smith and Couch 1991). Drawing on the framework we have laid outfor understanding EHMs, community contamination can be viewed in termsof a more fundamental conflict between biological bodies and the socialmeaning of illness.

We also see potential for the approach we have proposed to informnon-health social movements, especially those movements concerned withscientific knowledge. For example, scholars who study social movementsconcerned with science issues that are not directly related to health might beexamining social movements around natural resources, energy, geneticallymodified organisms and hydroelectric dams. In all these cases, activists crossboundaries with scientists, are compelled to learn science in order toadvance their movements, and eventually seek and even obtain seats at thetable to make decisions based on science. David Hess (2002) addresses thisin his notion of ‘technology-oriented social movements’, including organicfoods, nutritional therapeutics, renewable energy, recycling and human-centred transportation. Moreover, many identity-driven movements aim toremove the stigma of an identity by producing scientific knowledge thatnormalises the identity. These types of movement differ from EHMs inthat people’s experience of illness is not involved, but the boundary move-ment nature is still significant, as is the import of lived experience and layknowledge.

Our approach to understanding EHMs synthesises elements from a vari-ety of social movement perspectives, and brings together material frommultiple sub-fields of sociology. Our focus on the unique ways in which



EHMs blur boundaries between lay and expert knowledge offers a new wayof looking at health-related social movements.

Address for correspondence: Phil Brown, Department of Sociology, BrownUniversity, Box 1912, Providence RI 02912 USA e-mail: [email protected]

Acknowledgements

This research is supported by grants to the first author from the Robert WoodJohnson Foundation’s Investigator Awards in Health Policy Research Program(Grant #036273) and the National Science Foundation Program in Social Dimen-sions of Engineering, Science, and Technology (Grant # SES-9975518). We thankMeadow Linder, Theo Luebke, Joshua Mandelbaum and Pamela Webster for theirpart in the larger project from which this article arises. We thank Adele Clark andSteve Epstein for numerous discussions on these issues, and for their efforts to bringhealth social movement scholars together at the 2001 conference of the Society forthe Social Study of Science. We are grateful to Peter Conrad, Steve Epstein, DavidHess, Maren Klawiter, Jim Mahoney and Kelly Moore for their careful reading ofthe manuscript. We also thank participants at the Health Social Movements work-shop at the August 2002 conference of the Collective Behavior and Social Move-ments section of the American Sociological Association for helpful comments.

Notes

1 Not all EHMs necessarily centre on grievances; some may primarily want supportor more medical care. These EHMs are perhaps more widespread in the US thanelsewhere, 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 litera-ture here, since we are only beginning the task of describing health social move-ments and their more focused form, embodied health movements. We hope totake up such concerns in the near future.

3 Here we are focusing on the institutions of science and medical practice that areshaped by the biomedical model of disease. Clearly the majority of ill health ismanaged without having to engage with these institutions. But because indi-viduals who are able to address health concerns through family support, socialnetworks or personal symptom management strategies are unlikely to mobilisearound unmet health expectations, we focus on the individual’s experience withinformal healthcare systems where unmet health expectations can result in the senseof injustice that is more likely to lead to collective action.

4 This claim should be qualified since, as previously acknowledged, some illnesssufferers do choose to leave the system of Western medical care by seeking altern-ative and complementary therapies. As this group of individuals represents asmall minority of the ill who are seeking to restore their health, we choose tofocus on the dependence on science that characterises those who turn to main-stream medical care providers.



5 Though we lack the space to discuss this here, EHMs tend to rely on the Internetas a mobilisation tool. The Internet has given patients unprecedented access tomedical knowledge, and the ability to share that knowledge with one anotherthrough discussion lists and bulletin boards. As a result, individual illness experi-ence can often be transformed into collective illness experience, and in turn col-lective identity.

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Documents

Embodied Health Movements