Science as Culture, Volume 13, Number 4, December 2004

GENDER, EMBODIMENT, AND

DISEASE: Environmental Breast

Cancer Activists’ Challenges to

Science, the Biomedical Model, and

Policy

STEPHEN ZAVESTOSKI, SABRINA McCORMICK ANDPHIL BROWN

As developed and developing societies increasingly alter their naturalenvironments by introducing chemical and other industrial by-prod-ucts, disease-based social movements aiming to link various diseasesto environmental causes are becoming more common. The burdenof scientific proof, among other factors, poses a significant challengeto these movements. We illustrate how gender identity serves both toconstrain and enable activists in the environmental breast cancermovement (EBCM). We highlight how the EBCM’s attempt toemphasize possible environmental causes of breast cancer forces themovement to challenge the medical and popular explanations ofbreast cancer—what we call the dominant epidemiologicalparadigm—that point to personal lifestyle and genetics. The conceptof the dominant epidemiological paradigm provides an analyticalframework for exploring how gender concerns are central to environ-mental breast cancer activists’ efforts to link breast cancer to en-vironmental causes. It also provides a framework to see how genderdiscrimination gets institutionalized, and how activists respond tothat institutionalized discrimination by employing tactics that oftencentre on gender-based issues.

The dominant epidemiological paradigm of breast cancer, whichis largely supported by the mainstream breast cancer movement,focuses on individual-level approaches to stopping breast cancer.

Address correspondence to: Stephen Zavestoski, Department of Sociology, University of San Fran-cisco, 2130 Fulton Street, San Francisco, CA 94117-1080, USA, E-mail: smzavestoski@usfca.edu;Sabrina McCormick or Phil Brown, Department of Sociology, Box 1916, Brown University, Provi-dence, RI 02912, USA, E-mail: sabrina mccormick@brown.edu; phil brown@brown.edu

0950-5431 print/1470-1189 online/04/040563–24 2004 Process PressDOI: 10.1080/0950543042000311869

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They include mammography, change in diet and lifestyle, and treat-ment regimens. This mainstream movement, by most accounts, hasbeen highly successful. These activists have addressed women’smarginalization in medicine by pushing for more research and in-creasing the types and quality of treatment. Today women partici-pate in decisions about their own health care and benefit from careoptions made available due to the successes of breast cancer activists.Women have more treatment options, get access to knowledge vitalto making treatment decisions, benefit from massive increases ingovernment research spending, and even get to review researchproposals and design research itself. Yet due to the general breastcancer movement’s engagement in a biomedical approach, the dis-ease is still perceived, both popularly and within the medical com-munity, as preventable through managing personal risk factors. Fromgenetics to lifestyle factors such as diet, age at first birth, alcoholconsumption, and exercise, women are taught to change theirlifestyles to minimize their breast cancer risk.

However, the EBCM has been working since the early 1990s tochallenge the personal lifestyle emphasis by generating public poli-cies and scientific knowledge that address environmental causes ofbreast cancer. This movement takes an even more radical approachto undoing gender discrimination by attacking not only a lack ofattention to breast cancer, but also by challenging the approach tobreast cancer. These activists claim that an individualized approachis one that lays blame on women, rather than the political and socialstructures that allow them to be exposed to carcinogenic chemicals.Therefore, EBCM actors deal with particular constraints and re-sources that may not be the same as the general breast cancermovement. In this article, we explain how gender, in its essentialistand socially constructed forms, both enables and constrains environ-mental breast cancer activists’ efforts to replace popular and medicalnotions of breast cancer as a personal trouble with a more criticalperspective that situates breast cancer in a broader social and en-vironmental context. Enabling effects include (1) a unique perspec-tive on health and illness that comes from women’s marginalization;(2) a holistic conception of social change that connects knowledge,experience and action; and (3) solidarity and social networks thatgrow out of a shared sense of subordination. The constrainingelements include: (1) preconceived notions of activists as ‘hysterical

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women’; (2) marginalized illness experience; and (3) the sexualiza-tion of breast cancer. We argue that of particular import is the waythat pushing conceptualizations of breast cancer outside the individ-ual necessitates embodied knowledge by women of their own ex-posure to toxics and other environmental factors.

This effort is captured in the following claim made by a breastcancer researcher and activist we interviewed: ‘Researchers need tostart to think about the biologic processes happening in the breast inrelationship to the world in which the woman is walking whohappens to have those breasts, so that there’s not just this disembod-ied breast that’s hanging out somewhere’. At its core, the EBCM isabout drawing attention away from the narrow biomedical focus onthe breast’s cells, and toward the environments and exposures thatmight be shaping cellular processes leading to breast cancer. TheEBCM emerged largely due to the mainstream breast cancer move-ment’s failure to consider environmental causes.1 The mainstreammovement has expanded the rights of women to participate indecisions about their treatment, and pushed for newer and bettertreatment approaches, but on the issue of causation the mainstreammovement has largely accepted the medical community’s focus onlifestyle and genetic factors.

The EBCM’s activities include broadening public awareness of,and increasing research into, potential environmental causes ofbreast cancer. The EBCM also presses for policies to prevent en-vironmental causes of breast cancer, and to increase activist partici-pation in research. Toward these ends, the EBCM has becomecomfortable moving within a variety of what Klawiter (1999) de-scribes as ‘cultures of action’: organization- and institution-specificcultures that promote and permit certain types of action whilediscouraging others. Many activists in the EBCM, for example,participate in the mainstream movement’s campaigns such as lobby-ing for more money for breast cancer research. But they also urgethat some of that money help study potential environmental causes.Elsewhere we discuss further the ways in which the EBCM is a‘boundary movement’ (McCormick et al., 2003). At present, ourdiscussion of the EBCM is intended to demonstrate how gendersimultaneously enables and constrains social movement actors.2 Webuild our analysis around what we call the ‘dominant epidemiologi-cal paradigm’, a generally accepted set of beliefs about an illness that

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is shaped by social institutions such as government, science, andmedia. These institutions draw on existing stocks of knowledge toidentify and define disease, as well as determine its etiology, propertreatment, and acceptable health outcomes.

� GENDER, DISEASE, AND SOCIAL MOVEMENTS

Gender has come to be seen as a fundamental feature of socialmovements [Brown and Ferguson, 1995; Einwohner et al., 2000;Taylor, 1999; also see special issues of Gender & Society (Taylor andWhittier, 1998, 1999)]. Work on the interaction of gender and socialmovements has examined obstacles or access to political resources asa result of gendered political systems and opportunities (Marx Ferreeand Roth, 1998), gender differences in recruitment to and experi-ence in activism (Irons, 1998; McAdam, 1992), and the develop-ment of new organizational forms and leadership styles grounded ingendered experiences (Fonow, 1998; Robnett, 1997; Stall andStoecker, 1998). Another focus has been the roles of collectiveidentity and framing as tools of making gender more or less salientin a social movement (Taylor, 1996, 1999; Einwohner, 1999).

The impact of gender can function differently from movement tomovement and from organization to organization. Klawiter’s (1999)analysis of various ‘cultures of action’ in San Francisco Bay Areabreast cancer organizations, though not focused on the role ofgender, captures the different ways in which movement organizationsemploy gender. We focus on the EBCM, as distinct from themainstream movement, because the popular and medical notions ofbreast cancer as a personal trouble that the EBCM works to over-come are themselves the products of the mainstream movement’suses of gender. The mainstream movement, for example, does notquestion, and in fact in many cases perpetuates, mainstream hetero-sexual femininity. The heavy involvement of beauty and fashionindustry companies as sponsors of events like the Susan G. KomenFoundation’s ‘Race for the Cure’ and National Breast CancerAwareness Month exemplify the centrality of heterosexual norms offemininity in the mainstream breast cancer movement.

Though the EBCM is by no means a unified movement, for themost part it takes a radical approach that questions traditionalnotions of femininity, especially in the ways they are used to portray

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women with breast cancer as helpless victims. Similarly, the EBCMquestions the use of women’s breasts, especially the mastectomizedbreast, to symbolize lost femininity, whereas the mainstream move-ment emerged out of support groups and other programmes de-signed to help women learn to wear prosthetic breasts and hide theevidence of their disease so as to maintain their femininity. BreastCancer Action’s ‘Think Before You Pink’ Campaign exemplifies thecritical perspective of the EBCM. The campaign, whose highlightwas an advertisement in the New York Times (see Figure 1), askedbreast cancer activists and supporters to question the mainstreammovement’s willingness to sell the right to use the pink ribbon as amarketing/fundraising icon to any interested corporation. In particu-lar, Breast Cancer Action’s ‘Think Before You Pink’ campaignsought to critique the involvement of cosmetic companies in breastcancer fundraising since many cosmetic products contain toxic ingre-dients with potential links to breast cancer.

The ‘Think Before You Pink’ campaign highlights the differentways in which gender functions in the mainstream movement andEBCM. The former embraces heteronormative ideas about feminin-ity while the latter, as we will discuss, uses gendered experiences ofillness and knowledge production to question the mainstream’sacceptance of the dominant epidemiological paradigm. Nevertheless,gender both enables and constrains the EBCM. Movements withfeminine identities often find themselves in what Einwohner et al.(2000) call a double bind. The double bind results from short-termadvantages that movements may gain by tapping into widespreadcultural beliefs about femininity on one hand, and the potentialdisadvantages a feminine identity can bring by creating expectationsabout appropriate strategies for activists on the other. Montini(1996) describes the double bind of breast cancer activists whobenefit from emotional pleas for public support for their cause, butare discredited in the political realm for using such pleas.

The double bind reflects one way in which gender is bothenabling and constraining. Gender provides a context for makingsense of the breast cancer experience; and for many, making sense ofthe experience means mobilizing to oppose the very structures thatshaped those experiences. Next we discuss our concept of thedominant epidemiological paradigm in order to elaborate further ongender’s enabling and constraining characteristics.

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Credit: Breast Cancer Action, advertisement in New York Times, 24 October 2003,www.bcaction.org

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� DOMINANT EPIDEMIOLOGICAL PARADIGM

For EBCM activists, unlike for many mainstream activists, thegendered experience of breast cancer leads them to experience theirdisease not as a personal trouble to be dealt with through lifestylechanges, but as a condition caused by social and environmentalfactors that are shaped by powerful social institutions. Activist ex-perience of gender differences and discrimination links illness experi-ence and movement mobilization in the following dynamic process.3

Government policies, scientific knowledge, and private sector healthresources exist prior to a disease being discovered—or, in somecases, prior to environmental causes being ‘discovered’ or purported.These factors trigger institutional processes that eventually lead tothe discovery and definition of a disease, assumptions about itsetiology that suggest particular treatments, and expectations aboutacceptable health outcomes. These are the elements of what we callthe dominant epidemiological paradigm.

These pre-existing institutional beliefs and practices that shapethe discovery and understanding of a disease also shape the illnessexperience for the affected population. When an affected populationis not satisfied with the government policies, scientific knowledge, orprivate sector health resources that follow the discovery anddefinition of the disease, they may mobilize to challenge the domi-nant paradigm. The mainstream breast cancer movement, for exam-ple, struggles to transform government policies, scientificunderstanding, and public awareness to achieve better detection andtreatment. In addition to concerns about detection and treatment,the EBCM is also dissatisfied with the current etiological under-standing of breast cancer. But established institutions—such asgovernment agencies and professional medical organizations—collec-tively produce a dominant paradigm that they have a stake inpreserving (Shriver et al., 1998). Disease groups challenge thisparadigm by entering the domains of science, policy, and the privatesector (e.g. the media).

Our analysis of breast cancer’s dominant epidemiologicalparadigm demonstrates how structural processes, such as the appli-cation of institutionalized stocks of medical knowledge, shape healthsocial movements, and how gendered institutions such as scienceand government impose obstacles to challenging such a paradigm.We use the main components of a dominant epidemiological

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paradigm—government policies, scientific knowledge, and privatesector actors like the media—to organize our analysis since thesecomponents are also the primary avenues through which gender canenable and constrain social movement actors.

� DATA AND METHODS

A content analysis of 30 years of media coverage of environmentalcauses of breast cancer, which we report elsewhere (Brown et al.,2001), was used to identify the central themes and issues involved inthe research, policy, and activism surrounding breast cancer. Weused these themes to construct interview schedules that were used in44 interviews with activists in organizations representative of theEBCM in Massachusetts, Long Island, NY, and California’s SanFrancisco Bay Area, and with scientists and researchers who hadworked with activists in their research. We used contacts in severalorganizations to secure interviews, and relied on the snowballmethod to fill out the rest. Our sample reflected the homogeneity ofthe larger breast cancer movement—42 of 44 interviewees wereCaucasian and could be described as middle class or higher. We alsoconducted observations on 11 separate occasions to supplement theinterviews, primarily at Silent Spring Institute in Newton, MA, animportant location for research into environmental causes of breastcancer. Observations included public meetings where the researcherspresented their work, scientific review panel meetings, and a confer-ence that brought together scientists, activists, and government.Finally, we relied on printed material and web-sites of the organiza-tions in which we interviewed and observed, in order to characterizetheir political stances and public activities. The data were analyzedqualitatively using QSR NVivo. All unreferenced quotations anddata come from our interviews and observations.

� GENDER AND MOVEMENT PROCESSES AND OUTCOMES

� Environmental activism meets breast cancer activismWidespread commitment to personal lifestyle factors has led to agrowing dissatisfaction among some women with breast cancer.Meanwhile, the environmental movement’s successes in the 1980sand 1990s led some of these women to contemplate how breast

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Women’s Community Cancer Project (WCCP) Mural on Cancer Activism.

Credit: The mural was co-created by Women’s Community Cancer Project (WCCP) andartist/activist Be Sargent. It was dedicated in 1999, and is located at 10 Church Street,Cambridge, MA 02138. The women portrayed in the center of the mural are Maria LuisaAlvarez, Agnes Barboza, Rachel Carson, Cindy Chin, Valerie Hinderlie, Audre Lorde,Jeanmarie Marshall, Esther Rachel Rome, Myra Sadker, Susan Shapiro, JaquelineShearer, and Thelma Vanderhoop Weissberg. Those who want to be on WCCP’s e-mail“alert” list can send their e-mail address to: wccp9@aol.com.

cancer and environment might be linked. The toxic waste movementin particular, which had increased public awareness of the healtheffects of toxics and focused on corporate responsibility, spurredsome breast cancer activists to begin considering environmentalcauses. As new groups emerged, and some shifted their focus, theEBCM was born.

Women have typically spearheaded grassroots toxic waste ac-tivism, and made up a majority of the movement’s leaders andactivists. These female leaders draw on unique experiences and waysof knowing to shape their activism. Similar to the breast cancermovement’s struggle to overcome gender biases in science andmedicine and assert the validity of female knowledge, ‘the womentoxic waste activists’ struggle … is centrally about the uses of knowl-edge and the validity of claims to recognition and authority asknowers’. Just as women toxic waste activists ‘transform their every-day experiences … into knowledge that they can use in the struggle

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against toxic waste, … insist[ing] on its validity as knowledge’(Brown and Ferguson, 1995, pp. 149, 151), so too do breast canceractivists rely on their experiences with breast cancer to overturn thedetection, treatment, and prevention paradigms that are derivedprimarily from the ‘objective’ knowledge of the scientific process(Fosket, 2000; Rosenbaum and Roos, 2000).

The mainstream breast cancer movement does not questionscientific authority or draw on experiential knowledge of women withbreast cancer in the same ways as the EBCM. The mainstreammovement tends to employ gender in terms of normative heterosex-ual feminine ideals of beauty and motherhood that can be used toleverage sympathy and support. The EBCM, on the other hand,takes a similar epistemological stance as the toxic waste movement inorder to assert women’s ways of knowing as a valid basis for positingpossible links between toxics and breast cancer.

In the next section we use the three components of dominantdisease paradigms—science, government, and the private sector—toorganize the presentation of our findings. We find that women in theEBCM have pushed for research that is directly relevant, rather thanmerely methodologically sophisticated, for researchers to be moreaccepting of lay perspectives that stem from their embodied self-awareness, and for science and government to accept greater layinvolvement in research. They seek media attention for a disease thatstrikes primarily women, but without sexualizing the coverage of thatproblem. They put forth a broad perspective that includes moralvalues and political economic critique, while still working in parts ofthe political mainstream. Through all of this, they transform personalexperience into scientific knowledge and then into political action.

� Breast cancer activists’ challenges to science and the biomedical modelThe EBCM has consistently pushed for greater advocate involve-ment in the research development and review processes. Its successesinclude getting advocates on review panels for research funded bythe state of California and the Department of Defense. Activistsbring their embodied knowledge to these processes, but also have towork to overcome expectations that laypeople, especially women,will undermine scientific processes with emotional or unfoundedconcerns. They do this by constantly reminding researchers of the

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reason for their research, which some scientists come to respect.According to a California activist:

I’ve seen review panels where there are three scientists and anadvocate, and the first three scientists look at a [research]proposal and say ‘Wow, this is brilliant methodologically’.Then the advocate looks at it and says ‘What’s this have to dowith women living with breast cancer?’ Believe it or not, [thescientists] go ‘Oh yeah’. I’ve even seen them revise theirscores [in rating a proposal] on the basis of these discussions.

In this way, activists bring an embodied understanding to bear on thescientific process, and are instrumental in shaping the accumulationof scientific knowledge.

But this influence is only achieved when activists have overcomethe constraining effects of being preconceived by scientists andothers as ‘hysterical women’. Programmes such as the NationalBreast Cancer Coalition’s (NBCC) Project LEAD, which offersintensive orientation programmes for advocates to enable them toserve on grant review panels and scientific advisory boards, helpactivists gain the respect of researchers and overcome constraininggender stereotypes. As a result of this participation, many activistsreport changes in their expectations about what science can prove interms of environmental causation and their perceptions of the lengthof time necessary to conduct research. Participation in the researchprocess also helps activists overcome feelings of fear and anxietyabout scientists. As a New York activist explained:

The thing that I came away with that was most surprising washow much the scientists and the MDs have come to value theactivist perspective on these panels. And not only just puttinga face on the statistics, but also that they appreciate … whenyou ask the questions ‘Why is this relevant’, ‘Who cares?’.

Traditional scientific canons of objectivity have only allowed certainpeople the ability to conduct what is considered to be valid research.Given this, one would expect there to be much reticence to includeadvocates in research. As the following passages from interviews withactivists in Massachusetts and California illustrate, activists tend todraw on their experience of prejudice against activist women to makesense of scientists’ apprehensions:

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I know that professionals like to build up their own … auraand arena so that it can’t be pierced by anyone because afterall they paid the dues. But it’s nothing more than communi-cation and relationships. Everything is understandable andpierceable. The more people are willing to share their exper-tise, realizing that the others are not trying to replace theirexpertise or their judgment, I think the more effective we canbe.

I think there is a respect for bright people and I think theassumption often is that activists are going to be hystericalwomen. And I think once most scientists realise that we’re nothysterical women, they find themselves … intrigued. And theymight come to the table with a lot of prejudices and worriesbut I have rarely seen it continue to be a problem.

These excerpts capture the constraining and enabling aspects ofgender with respect to breast cancer activism. Preconceived ideasabout female activists lead some scientists to regard breast canceradvocates apprehensively. Therefore, these activists focus on learningthe scientific vocabulary in order to minimize any tension that mightexist between scientists and advocates. Their challenge is to thenmaintain an activist value-system that prioritizes the practical con-cerns of women with breast cancer, but not appearing too radical.

Even if activists forge positive relationships with researchers whothen take up questions of environmental causation, these researchersare often discredited. In part, this is due to the fact that many of theresearchers interested in environmental links to breast cancer arewomen themselves. This captures another sense in which gender isboth enabling and constraining. On one hand, the embodied knowl-edge these women bring to their research gives them different waysof seeing problems, leads them to ask different questions, andencourages them to accept as legitimate the knowledge that layactivists bring to the research. On the other hand, as women workingat the margins of acceptable science, their work may not be taken asseriously. As one female researcher from Silent Spring Instituteexplained:

It is hard to get people’s attention when you are from SilentSpring Institute and doing research about environmental fac-tors in breast cancer. It’s hard to break through and

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get … scientists’ attention … You go through a kind of hazingwhere you have to establish, by talking about what you aredoing, your credibility with each new member. You don’thave on your name tag, Harvard University. You really haveto go through a process of demonstrating your credibility.

While her stigma has more to do with her institutional identity in thiscase, it is her gender identity that has led her to do the type of workshe is doing, in a feminist institution like the Silent Spring Institutethat values a gendered, multilayered approach to research. Breastcancer research that gives voice to the personal experience of illness,especially when these voices also challenge political structures, canseem antithetical to traditional science.

The interview excerpts in this section illustrate that women’sgendered experiences within the institution of science create aunique set of opportunities and obstacles to transforming the domi-nant paradigm. In contesting the dominant scientific practices usedto understand disease causation, environmental breast cancer ac-tivists bring to bear the uniquely integrated gendered experiences ofdisease and movement participation.

� Media, AIDS, and environmentalism: private sector components of thedominant epidemiological paradigm

In terms of the media, gender again proves both constraining andenabling. The newsworthiness of young women whose femininity isthreatened by breast cancer means that breast cancer gets four timesmore coverage than prostate cancer, the next most popular cancertopic for the media (Saywell et al., 2000). Yet the media’s focus onyoung women leads to less attention to older women who are atgreater risk (Burke et al., 2001). Though the sexualization of breastcancer results in greater media coverage, a benefit the mainstreammovement covets, the more critical EBCM attempts to undo theharm of sexualizing breast cancer.

The media is a key element of the private sector component ofthe dominant epidemiological paradigm. If activists can generatemedia attention, public awareness may reach levels justifying publicpolicies that support scientific research. But as our content analysisof media coverage of environmental causation of breast cancersuggests, the media actually perpetuate the dominant epidemiologi-

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cal paradigm’s emphasis on lifestyle and genetic risk factors.4 Ourexamination of 1,707 articles in daily newspapers, news-weeklies,science periodicals, and women’s magazines found that barely 6% ofthem ever mentioned possible environmental causes. Not surpris-ingly, in those that do mention the environment, there is scantattention to corporate and governmental responsibility. We alsofound that articles often focus on individual responsibility for diet,age at birth of first child, and other personal behaviours, as well ason genetic causation (Brown et al., 2001). Fosket et al.’s (2000)content analysis of women’s magazines’ coverage of breast cancerduring the twentieth century found similar results. Fosket et al.(2000) and Saywell et al. (2000) also found that women’s magazinestend to sexualize the issue of breast cancer by depicting young,feminine, and attractive women in their photographs and stories.The media’s sexualization of breast cancer, which relies on con-structing the loss of a culturally valued part of one’s sexual identityas a ‘tragedy’, constrains EBCM activists by diverting public atten-tion away from the bigger structural critiques made by the EBCM.

One of the strategies dissatisfied disease sufferers use to challengea dominant epidemiological paradigm is to work with other diseasegroups or social movements. Environmental breast cancer activistsbenefited from the feminist movement in terms of increased publicattention to women’s issues, public pressure to fund research onwomen’s issues, an infrastructure of women’s groups, tactics foractivism, and ideological foundations. The EBCM also emergedfrom the women’s health movement which over the past 25 years hasfocused on increasing funding into research for women’s illnesses,educating women about their bodies, including women in clinicaltrials, criticizing the medicalization of women’s experiences, andfighting for self-determination of health care options (Lorber, 1997;Norsigian, 1996; Ruzek et al., 1997).

Early AIDS activists also benefited from the critiques first intro-duced by the women’s health movement (Epstein, 1996). Subse-quently, lesbian activists involved in the AIDS movement broughtorganizing strategies into the breast cancer movement. These exam-ples of movement overlap, in which membership, tactics, and evenforms of social critique are shared across movements, is similar towhat Meyer and Whittier (1994) term ‘social movement spillover’.The environmental breast cancer activists have in turn borrowed

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organizing and protest tactics from AIDS activists. One activist weinterviewed, in talking about her organization, provided a detailedaccount of the way in which AIDS activism shaped the EBCM:‘Originally, the founders of the organization were following thelead … of the NBCC and the AIDS activists in drawing attention tothe issue. And they became very vocal and held rallies and gotwomen empowered to do something’. The AIDS movement hasbeen an exemplary model for EBCM activists in terms of demandinglay involvement in research, as well as public education and socialprotest. The methods utilized by AIDS activists, such as workingwith researchers to change scientific study, provided an example forfuture breast cancer activism. As Epstein (1996) reports, AIDSactivists in San Francisco, concerned that naı̈ve EBCM activists werebeing misled by pharmaceutical companies, also helped breast canceractivists learn the language of the drug companies and learn whattheir rights were in terms of participation on advisory boards andaccess to protocols.

However, unlike the predominantly male-driven AIDS move-ment, which began without extensive bodies of knowledge or frame-works for understanding the disease, this was not the case for genderconstrained women who challenged breast cancer’s dominantparadigm. As a California activist explained, women with breastcancer were faced with long-held beliefs about breast cancer causesand treatments:

AIDS had a clean slate. There were no agencies alreadyworking on the issue. Research agendas and policy weregetting framed as it went along. When the breast cancermovement came along, the institutions were there. We weredealing with changing pre-existing ways of dealing with thedisease. And, we were women.5

This activist added that while the AIDS movement was very focusedon treatment, ‘we’re now fighting this environmental struggle, whichI would contend is much more difficult’. Indeed, unlike with theenvironmental breast cancer activists, AIDS activists’ demands forbetter treatment options and more research were not a threat to thepolitical economy underlying the dominant paradigm, even thoughthey challenged social norms.

Finally, the predominance of women in the environmental and

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toxic waste movements facilitated the link between breast cancer andthe environment. Environmental activists provided legitimacy forenvironmental causation theories and offered an activist network thatcould be utilized for support. Although the extent to which theEBCM is formally linked with the environmental movement variesby organization, the awareness created by a national grassrootsenvironmental movement provided a basis from which the publiccould understand potential environmental causation and governmentcould recognize a constituency of voters.

Despite the support of the environmental movement, breastcancer activists believe that corporate interests make it hard for mostcancer groups and agencies to focus on environmental causation. AsBreast Cancer Action puts it:

I think we are the first breast cancer organisation in thecountry to make a corporate contribution policy. We don’ttake corporate money that is related to pharmaceutical, hospi-tal, chemical money, which is not an easy position to take … Ithink some breast cancer organisations are more reticent totake some of our positions related to the environment andindustry connections.

This activist’s comments capture how EBCM activists considerfactors outside the individual’s body—such as the political econ-omy—that might explain illness. Activists believe that the contem-porary political economy engenders lax governmental regulationsthat result in exposure to toxics and possible increases in breastcancer rates. Their conceptualization of this relationship grew out oflinks between breast cancer and environmental organizations. Mean-while, the mainstream movement’s use of more conventional hetero-sexual feminine norms employs gender as a way to leverage resourcesto support traditional scientific ways of knowing. In confronting thepolitical economy, the EBCM is forced to engage with governmententities, another component of the dominant epidemiologicalparadigm, who are often vested in maintaining the dominantparadigm. As we discuss in the next section, EBCM activists chal-lenge the government policies and practices that define and supportthe dominant paradigm of breast cancer.

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� Government policy and the dominant epidemiological paradigmEBCM activists begin with the knowledge that getting research intoenvironmental causes requires asking the government to be a party toresearch that has the potential to redefine the very economic progressthat government policy is designed to promote. One activist re-marked:

Research in the environment is very controversial becauseit … forces us to question the way we live, how we makedecisions about industrial production … promoting the notionthat more regulatory oversight of production needs to takeplace, which also from a political perspective is very contro-versial.

This perspective requires EBCM activists to be committed to draw-ing the connection between science and ethics:

We really sort of push particularly scientists or policy-makersto be honest about when an issue is a scientific one versus amoral one … When you choose to make a decision or takeaction it is predicated on good science and ultimately is ascientific decision whereas in reality when you really takeaction doesn’t … have to do with science but has to do withmorality and politics. I think social movements have reallyforced the regulatory and scientific communities to be a bitmore honest about that.

Though most activists engage in similar efforts to delineateboundaries between science and politics, EBCM activists draw ongendered ways of knowing that attempt to synthesize moral impera-tives with scientific approaches. Activists are constrained by thegeneral assumption that science is objective and that women are theopposite of objective—emotional. Therefore, they walk a tightrope inpushing scientists to see their own bias without appearing to beemotional women.

For example, activists have worked within traditional politicalchannels to raise money for scientific research. The primarily whiteand middle- to upper-middle class status of breast cancer activistshas provided them with access to essential resources. Some women,

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as one activist explained, are married to politicians who became keyplayers in drafting and championing legislation for breast cancer careand research:

You have frankly many more politicians’ family membersaffected by breast cancer [than by AIDS]. It’s that much moreprevalent a disease. So you can’t just dismiss [it] … Thereseem to be many quote–unquote respectable people withbreast cancer in ways that were very different for HIV/AIDS.So as a result you don’t get the same kind of demonisation ofthe activists.6

Environmental breast cancer activists also push for more researchinto environmental causes by demanding opportunities to participateon peer review panels that dole out government research funding.The California Breast Cancer Research Program’s model, in whichadvocates work with scientists and clinicians to set research prioritiesand determine the scientific merit of proposals, was adopted by theDepartment of Defense when it received appropriations from Con-gress for breast cancer research (Brenner, 2000). Not only was thisa success in terms of ensuring advocate participation in the researchprocess, but with the help of Senator Tom Harkins (D–IA), who hadexperienced breast cancer in his family, the funds were placed in thedefence budget to ensure their protection during periods of budgetcuts.7

In the case of the governmental component of the dominantepidemiological paradigm, gendered perspectives have shaped howEBCM activists draw the line between scientific and political de-bates. In addition, for some EBCM activists the gender discrimi-nation that has kept them out of politics has forced them to use theirties to predominately male politicians to influence politics. In each ofthe components of the dominant paradigm, in fact, gender operatesimplicitly rather than overtly. From colouring their individual experi-ences of breast cancer, to shaping the collective identity and mobi-lization of environmental breast cancer activists, and finally toinfluencing the movement strategies and tactics, gender discrimi-nation figures into the challenges activists make to the dominantepidemiological paradigm.

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� CONCLUSION: GENDERED BODIES IN CHEMICAL

ENVIRONMENTS

In transforming the personal into the political, environmental breastcancer movement (EBCM) activists demonstrate how their status aswomen positions them within social and economic structures in waysthat not only alter their experience and understanding of breastcancer, but also their odds of getting it. This approach attempts toovercome the current dominant epidemiological paradigm for breastcancer in which (1) the media sexualize breast cancer by appealingto the notion that the disease compromises femininity; (2) pharma-ceutical companies commodify breast cancer by treating breasts asproblems detached from women and their marginalization within thesocial structure; and (3) biomedical research objectifies femalebreasts as objects to be observed in the laboratory and viewed asseparate from women’s bodies.

While all breast cancer activists work to a certain extent toovercome the sexualization and commodification of breast cancer,environmental breast cancer activists are unique in their efforts toovercome the narrow individual focus of the biomedical model, andthe objectification of the breast in that process. Instead of narrowingtheir perspective solely to the breast, they attempt to place theembodied experience of women in social and environmental contextsthat highlight the possibility of chemical exposures as causes ofbreast cancer.

Our analysis of the enabling and constraining features of genderfor environmental breast cancer activists is useful for several reasons.First, it demonstrates the importance of focusing on physical bodiesin a human-altered natural environment that subjects individuals todifferent health threats according to their sex. The frequency withwhich women get breast cancer, especially as compared to men, andtheir unique experience of the disease, reflect how human bodiesinteracting with their environments are endangered, diagnosed, andtreated in gender-specific ways. These gendered experiences in turnshape illness group activism.

Second, the interaction of human bodies that occupy sociallyconstructed realities with environments shaped by ecological realitiesprovides insight into the larger body of environmental problemsfacing humans, and how our responses to them might depend on thegender of those affected. Rational-legal social systems problem-solve

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by reducing complex phenomena to their component parts. We haveexamined the EBCM in order to illustrate how the gender discrimi-nation inculcated in the dominant epidemiological paradigm is con-tested by a women’s movement that employs gender both as ananalytical tool and a feature of everyday lived experience. Under-standing how the EBCM works to place women’s bodies back intosocial and environmental context is important as it highlights the wayin which gender discrimination forces activists to leverage certainresources, and construct alternative discourses. Finally, the move-ment’s emphasis on locating breast cancer within the female body, asopposed to in a laboratory, demonstrates how this particular casestudy is tied to broader discussions in the history and philosophy ofscience and the social studies of science about the distinction be-tween the content and context of knowledge.

Third, in employing the concept of the dominant epidemiologicalparadigm, we add to the growing body of literature on gender andsocial movements by demonstrating how gender can be both en-abling and constraining in terms of realizing movement objectives.We do this in a way that illustrates the range of effects gender canhave: from the individual level of illness experience, to the structurallevel of political process and movement strategies. Rather thanisolating gender effects to illness experience on one hand, or socialmovement formation on the other, we show how gender processesintimately link the two.

These contributions force us to ask how other variables, such asrace, class, and age, might interact with gender and each other toshape illness experience, mobilization, and ultimately the role ofscience and knowledge in a movement’s success. For example, whatrole do these variables play in determining why some women focustheir energies on environmental causes of breast cancer, while othersparticipate only in the mainstream movement, and still others do notbecome active at all? Perhaps older women suspect their cancer issimply a result of old age, whereas younger women look for externalcauses. Or, perhaps class-based issues are more important thangender issues to some. Our analysis also raises questions about whatroles gender might play in other health conditions, as well as inmale-related health conditions. To answer these questions, socialscientists will have to develop better analytical understandings of theinteractions of social factors such as race, class, and gender with the

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physical environments humans alter. Such understandings will likelybe vital if human societies hope to create equitable and sustainablesocial systems in the future.

� ACKNOWLEDGEMENTS

This research is supported by grants to the second author from theRobert Wood Johnson Foundation’s Investigator Awards in HealthPolicy Research Program (Grant #036273) and the National ScienceFoundation Program in Social Dimensions of Engineering, Science,and Technology (Grant # SES-9975518). We thank Rebecca GasiorAltman, Meadow Linder, Theo Luebke, Josh Mandelbaum, BrianMayer, Rachel Morello-Frosch, Laura Senier, and Pamela Websterfor their collaboration in the larger project from which this workderives, and their contributions to thinking about this paper. Wethank Chloe Bird and Susan Ferguson who commented thoughtfullyon an earlier version of this paper. We also are grateful to theactivists, scientists, and others who allowed us to interview andobserve them for this work.

� N O T E S1. We do not consider the mainstream movement as some monolithic entity. Wecall the EBCM a movement, rather than a ‘wing’ of the mainstream movement,because it crosses into environmental activism in a way that makes it patentlydifferent from mainstream BC activism.2. Throughout we use the concepts of women, women’s experiences, and gen-dered experiences to refer to the predominately white and middle to uppermiddle-class breast cancer activists we interviewed. Rather than universalize theexperience of women, we intend only to generalize to the experiences of the ratherhomogenous group of women involved in the environmental breast cancer move-ment.3. We do not provide evidence here of how gender shapes the experience of breastcancer. This has been illustrated extensively by others (see Montini, 1996; Potts,2000; Rosenbaum and Roos, 2000; Taylor and van Willigen, 1996).4. Publishers may not want to run stories about health-threatening chemicals inthe environment if some of those chemicals are the products of their advertisers.As reported by McManus (1994), advertisers that provide major financial supportare able to manipulate media content in spite of the tradition of freedom of thepress in the United States.5. It should be noted that AIDS activists had their own set of obstacles, such asthe stigmatization of AIDS as a ‘gay-related’ disease. Also, rather than beginningwith a clean slate, AIDS activists had to deal with the medical communities’

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tendency to try to understand AIDS in terms of existing knowledge about venerealdisease. Future research might look more closely at how gender and sexualorientation interact in illness contestation by comparing and contrasting the casesof breast cancer and AIDS.6. We do not mean to construct the EBCM as a unified movement with a singleset of strategies and goals. For example, within the EBCM there are degrees towhich organizations are willing to take advantage of mainstream heterosexualnorms of femininity, including statuses as spouse of business or political leaders.Long Island activists used such leverage when they got a Republic senator to workto pass legislation for a massive study into environmental causes of breast cancer.San Francisco activists, on the other hand would be less likely to depend on suchsocial networks.7. Despite this attempt to protect future funding for breast cancer research, in2002 Congress appropriated $124 million to the Department of Defense pro-gramme, a $51 million reduction from 2001 appropriations.

� R E F E R E N C E SBrenner, B.A. (2000) ‘Sister support: women create a breast cancer movement’, in

A.S. Kasper and S.J. Ferguson (Eds), Breast Cancer: Society Shapes an Epi-demic, pp. 324–354. New York: St. Martin’s Press.

Brown, P. and Ferguson, F.I.T. (1995) ‘ “Making a big stink:” women’s work,women’s relationships, and toxic waste activism’, Gender & Society, 9: 145–172.

Brown, P., Zavestoski, S., McCormick, S., Mandelbaum, J. and Luebke, T.(2001) ‘Print media coverage of environmental causation of breast cancer’,Sociology of Health and Illness, 23: 747–775.

Burke, W., Olsen, A.H., Pinsky, L.E., Reynolds, S.E. and Press, N.A. (2001)‘Misleading presentation of breast cancer in popular magazines’, EffectiveClinical Practice, 4(2): 58–64.

Einwohner, R.L. (1999) ‘Gender, class, and social movement outcomes: identityand effectiveness in two animal rights campaigns’, Gender & Society, 13:56–76.

Einwohner, R.L., Hollander, J.A. and Olson, T. (2000) ‘Engendering socialmovements: cultural images and movement dynamics’, Gender & Society, 14:679–699.

Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge.Berkeley: University of California Press.

Fonow, M.M. (1998) ‘Protest engendered: the participation of women steelwork-ers in the Wheeling-Pittsburgh steel strike of 1985’, Gender & Society, 12:710–728.

Fosket, J. (2000) ‘Problematizing biomedicine: women’s constructions of breastcancer knowledge’, in L.K. Potts (Ed.), Ideologies of Breast Cancer: FeministPerspectives, pp. 15–36. New York: St. Martin’s Press.

Fosket, J., Karran, A. and LaFia, C. (2000) ‘Breast cancer in popular women’s

GENDER, EMBODIMENT, AND DISEASE 585

magazines from 1913 to 1996’, in A.S. Kasper and S.J. Ferguson (Eds), BreastCancer: Society Shapes an Epidemic, pp. 303–323. New York: St. Martin’sPress.

Irons, J. (1998) ‘The shaping of activist recruitment and participation: a study ofwomen in the Mississippi Civil Rights movement’, Gender & Society, 12:692–709.

Klawiter, M. (1999) ‘Racing for the cure, walking women, and toxic touring:mapping cultures of action within the Bay Area terrain of breast cancer’, SocialProblems, 46: 104–126.

Lorber, J. (1997) Gender and the Social Construction of Illness. Thousand Oaks, CA:Sage.

Marx Ferree, M, and Roth, S. (1998) ‘Gender, class, and the interaction betweensocial movements: a strike of West Berlin day care workers’, Gender & Society,12: 626–648.

McAdam, D. (1992) ‘Gender as a mediator of the activist experience: the case ofFreedom Summer’, American Journal of Sociology, 97: 1211–1240.

McCormick, S., Brown, P. and Zavestoski, S. (2003) ‘The personal is scientific,the scientific is political: the public paradigm of the Environmental BreastCancer Movement’, Sociological Forum, 18: 545–576.

McManus, J.H. (1994) Market-driven Journalism: Let the Citizen Beware? Thou-sand Oaks, CA: Sage.

Meyer, D.S. and Whittier, N. (1994) ‘Social movement spillover’, Social Problems,41: 277–298.

Montini, T. (1996) ‘Gender and emotion in the advocacy for breast cancerinformed consent legislation’, Gender & Society, 10: 9–23.

Norsigian, J. (1996) ‘The women’s health movement in the United States’, in K.L.Moss (Ed.), Man-made Medicine: Women’s Health, Public Policy, and Reform,pp. 79–98. Durham, NC: Duke University Press.

Potts, L.K. (2000) ‘Publishing the personal: autobiographical narratives of breastcancer and the self’, in L.K. Potts (Ed.), Ideologies of Breast Cancer: FeministPerspectives. New York: St. Martin’s Press.

Robnett, B. (1997) How Long? How Long? African American Women in the CivilRights Movement, pp. 98–130. New York: Oxford University Press.

Rosenbaum, M.E. and Roos, G.M. (2000) ‘Women’s experiences of breastcancer’, in A.S. Kasper and S.J. Ferguson (Eds), Breast Cancer: Society Shapesan Epidemic, pp. 153–181. New York: St. Martin’s Press.

Ruzek, S.B., Olesen, V. and Clarke, A. (Eds) (1997) Women’s Health: Complexitiesand Differences. Columbus, OH: Ohio State University Press.

Saywell, C., Henderson, L. and Beattie, L. (2000) ‘Sexualized illness: the news-worthy body in media representations of breast cancer’, in L.K. Potts (Ed.),Ideologies of Breast Cancer: Feminist Perspectives, pp. 37–62. New York: St.Martin’s Press.

Shriver, T.E., White, D.A. and Kebede, A. (1998) ‘Power, politics, and theframing of environmental illness’, Sociological Inquiry, 68: 458–475.

Stall, S. and Stoecker, R. (1998) ‘Community organizing or organizing com-

SCIENCE AS CULTURE586

munity? Gender and the crafts of empowerment’, Gender & Society, 12:729–756.

Taylor, V. (1996) Rock-a-by Baby: Feminism, Self-help, and Post-partum Depression.New York: Routledge.

Taylor, V. (1999) ‘Gender and social movements: gender processes in women’sself-help movements’, Gender & Society, 13: 8–33.

Taylor, V. and Van Willigen, M. (1996) ‘Women’s self-help and the reconstruc-tion of gender: the postpartum support and breast cancer movements’, Mobi-lization, 1(2): 123–142.

Taylor, V. and Whittier, N. (1998) ‘Guest editor’s introduction: special issue ongender and social movements: Part I’, Gender & Society, 12: 622–625.

Taylor, V. and Whittier, N. (1999) ‘Guest editor’s introduction: special issue ongender and social movements: Part II’, Gender & Society, 13: 5–7.