This article was downloaded by: [University Paris Diderot Paris 7]

On: 01 December 2014, At: 12:35

Publisher: Routledge
Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered
office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Science as Culture
Publication details, including instructions for authors and
subscription information:
http://www.tandfonline.com/loi/csac20

Gender, embodiment, and disease:

Environmental breast cancer activists'
challenges to science, the biomedical
model, and policy
Stephen Zavestoski , Sabrina McCormick & Phil Brown
Published online: 13 Oct 2010.

To cite this article: Stephen Zavestoski , Sabrina McCormick & Phil Brown (2004)
Gender, embodiment, and disease: Environmental breast cancer activists' challenges
to science, the biomedical model, and policy, Science as Culture, 13:4, 563-586, DOI:
10.1080/0950543042000311869
To link to this article: http://dx.doi.org/10.1080/0950543042000311869

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the
Content) contained in the publications on our platform. However, Taylor & Francis,
our agents, and our licensors make no representations or warranties whatsoever as to
the accuracy, completeness, or suitability for any purpose of the Content. Any opinions
and views expressed in this publication are the opinions and views of the authors,
and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content
should not be relied upon and should be independently verified with primary sources
of information. Taylor and Francis shall not be liable for any losses, actions, claims,
proceedings, demands, costs, expenses, damages, and other liabilities whatsoever
or howsoever caused arising directly or indirectly in connection with, in relation to or
arising out of the use of the Content.
This article may be used for research, teaching, and private study purposes. Any
substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,
systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions

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

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND

DISEASE: Environmental Breast
Cancer Activists Challenges to
Science, the Biomedical Model, and
Policy
STEPHEN ZAVESTOSKI, SABRINA McCORMICK AND
PHIL BROWN

As developed and developing societies increasingly alter their natural

environments by introducing chemical and other industrial by-products, disease-based social movements aiming to link various diseases
to environmental causes are becoming more common. The burden
of scientific proof, among other factors, poses a significant challenge
to these movements. We illustrate how gender identity serves both to
constrain and enable activists in the environmental breast cancer
movement (EBCM). We highlight how the EBCMs attempt to
emphasize possible environmental causes of breast cancer forces the
movement to challenge the medical and popular explanations of
breast cancerwhat we call the dominant epidemiological
paradigmthat point to personal lifestyle and genetics. The concept
of the dominant epidemiological paradigm provides an analytical
framework for exploring how gender concerns are central to environmental breast cancer activists efforts to link breast cancer to environmental causes. It also provides a framework to see how gender
discrimination gets institutionalized, and how activists respond to
that institutionalized discrimination by employing tactics that often
centre on gender-based issues.
The dominant epidemiological paradigm of breast cancer, which
is 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 Francisco, 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, Providence, RI 02912, USA, E-mail: sabrina mccormick@brown.edu; phil brown@brown.edu

0950-5431 print/1470-1189 online/04/04056324 2004 Process Press

DOI: 10.1080/0950543042000311869

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

564

SCIENCE AS CULTURE

They include mammography, change in diet and lifestyle, and treatment regimens. This mainstream movement, by most accounts, has
been highly successful. These activists have addressed womens
marginalization in medicine by pushing for more research and increasing the types and quality of treatment. Today women participate in decisions about their own health care and benefit from care
options made available due to the successes of breast cancer activists.
Women have more treatment options, get access to knowledge vital
to making treatment decisions, benefit from massive increases in
government research spending, and even get to review research
proposals and design research itself. Yet due to the general breast
cancer movements engagement in a biomedical approach, the disease is still perceived, both popularly and within the medical community, as preventable through managing personal risk factors. From
genetics to lifestyle factors such as diet, age at first birth, alcohol
consumption, and exercise, women are taught to change their
lifestyles to minimize their breast cancer risk.
However, the EBCM has been working since the early 1990s to
challenge the personal lifestyle emphasis by generating public policies and scientific knowledge that address environmental causes of
breast cancer. This movement takes an even more radical approach
to undoing gender discrimination by attacking not only a lack of
attention to breast cancer, but also by challenging the approach to
breast cancer. These activists claim that an individualized approach
is one that lays blame on women, rather than the political and social
structures that allow them to be exposed to carcinogenic chemicals.
Therefore, EBCM actors deal with particular constraints and resources that may not be the same as the general breast cancer
movement. In this article, we explain how gender, in its essentialist
and socially constructed forms, both enables and constrains environmental breast cancer activists efforts to replace popular and medical
notions of breast cancer as a personal trouble with a more critical
perspective that situates breast cancer in a broader social and environmental context. Enabling effects include (1) a unique perspective on health and illness that comes from womens marginalization;
(2) a holistic conception of social change that connects knowledge,
experience and action; and (3) solidarity and social networks that
grow out of a shared sense of subordination. The constraining
elements include: (1) preconceived notions of activists as hysterical

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND DISEASE

565

women; (2) marginalized illness experience; and (3) the sexualization of breast cancer. We argue that of particular import is the way
that pushing conceptualizations of breast cancer outside the individual necessitates embodied knowledge by women of their own exposure to toxics and other environmental factors.
This effort is captured in the following claim made by a breast
cancer researcher and activist we interviewed: Researchers need to
start to think about the biologic processes happening in the breast in
relationship to the world in which the woman is walking who
happens to have those breasts, so that theres not just this disembodied breast thats hanging out somewhere. At its core, the EBCM is
about drawing attention away from the narrow biomedical focus on
the breasts cells, and toward the environments and exposures that
might be shaping cellular processes leading to breast cancer. The
EBCM emerged largely due to the mainstream breast cancer movements failure to consider environmental causes.1 The mainstream
movement has expanded the rights of women to participate in
decisions about their treatment, and pushed for newer and better
treatment approaches, but on the issue of causation the mainstream
movement has largely accepted the medical communitys focus on
lifestyle and genetic factors.
The EBCMs activities include broadening public awareness of,
and increasing research into, potential environmental causes of
breast cancer. The EBCM also presses for policies to prevent environmental causes of breast cancer, and to increase activist participation in research. Toward these ends, the EBCM has become
comfortable moving within a variety of what Klawiter (1999) describes as cultures of action: organization- and institution-specific
cultures that promote and permit certain types of action while
discouraging others. Many activists in the EBCM, for example,
participate in the mainstream movements campaigns such as lobbying for more money for breast cancer research. But they also urge
that 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, our
discussion of the EBCM is intended to demonstrate how gender
simultaneously enables and constrains social movement actors.2 We
build our analysis around what we call the dominant epidemiological paradigm, a generally accepted set of beliefs about an illness that

566

SCIENCE AS CULTURE

is shaped by social institutions such as government, science, and

media. These institutions draw on existing stocks of knowledge to
identify and define disease, as well as determine its etiology, proper
treatment, and acceptable health outcomes.

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, DISEASE, AND SOCIAL MOVEMENTS

Gender has come to be seen as a fundamental feature of social

movements [Brown and Ferguson, 1995; Einwohner et al., 2000;
Taylor, 1999; also see special issues of Gender & Society (Taylor and
Whittier, 1998, 1999)]. Work on the interaction of gender and social
movements has examined obstacles or access to political resources as
a result of gendered political systems and opportunities (Marx Ferree
and Roth, 1998), gender differences in recruitment to and experience in activism (Irons, 1998; McAdam, 1992), and the development of new organizational forms and leadership styles grounded in
gendered experiences (Fonow, 1998; Robnett, 1997; Stall and
Stoecker, 1998). Another focus has been the roles of collective
identity and framing as tools of making gender more or less salient
in a social movement (Taylor, 1996, 1999; Einwohner, 1999).
The impact of gender can function differently from movement to
movement and from organization to organization. Klawiters (1999)
analysis of various cultures of action in San Francisco Bay Area
breast cancer organizations, though not focused on the role of
gender, captures the different ways in which movement organizations
employ gender. We focus on the EBCM, as distinct from the
mainstream movement, because the popular and medical notions of
breast cancer as a personal trouble that the EBCM works to overcome are themselves the products of the mainstream movements
uses of gender. The mainstream movement, for example, does not
question, and in fact in many cases perpetuates, mainstream heterosexual femininity. The heavy involvement of beauty and fashion
industry companies as sponsors of events like the Susan G. Komen
Foundations Race for the Cure and National Breast Cancer
Awareness Month exemplify the centrality of heterosexual norms of
femininity in the mainstream breast cancer movement.
Though the EBCM is by no means a unified movement, for the
most part it takes a radical approach that questions traditional
notions of femininity, especially in the ways they are used to portray

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND DISEASE

567

women with breast cancer as helpless victims. Similarly, the EBCM

questions the use of womens breasts, especially the mastectomized
breast, to symbolize lost femininity, whereas the mainstream movement emerged out of support groups and other programmes designed to help women learn to wear prosthetic breasts and hide the
evidence of their disease so as to maintain their femininity. Breast
Cancer Actions Think Before You Pink Campaign exemplifies the
critical perspective of the EBCM. The campaign, whose highlight
was an advertisement in the New York Times (see Figure 1), asked
breast cancer activists and supporters to question the mainstream
movements willingness to sell the right to use the pink ribbon as a
marketing/fundraising icon to any interested corporation. In particular, Breast Cancer Actions Think Before You Pink campaign
sought to critique the involvement of cosmetic companies in breast
cancer fundraising since many cosmetic products contain toxic ingredients with potential links to breast cancer.
The Think Before You Pink campaign highlights the different
ways in which gender functions in the mainstream movement and
EBCM. The former embraces heteronormative ideas about femininity while the latter, as we will discuss, uses gendered experiences of
illness and knowledge production to question the mainstreams
acceptance of the dominant epidemiological paradigm. Nevertheless,
gender both enables and constrains the EBCM. Movements with
feminine identities often find themselves in what Einwohner et al.
(2000) call a double bind. The double bind results from short-term
advantages that movements may gain by tapping into widespread
cultural beliefs about femininity on one hand, and the potential
disadvantages a feminine identity can bring by creating expectations
about appropriate strategies for activists on the other. Montini
(1996) describes the double bind of breast cancer activists who
benefit from emotional pleas for public support for their cause, but
are discredited in the political realm for using such pleas.
The double bind reflects one way in which gender is both
enabling and constraining. Gender provides a context for making
sense of the breast cancer experience; and for many, making sense of
the experience means mobilizing to oppose the very structures that
shaped those experiences. Next we discuss our concept of the
dominant epidemiological paradigm in order to elaborate further on
genders enabling and constraining characteristics.

SCIENCE AS CULTURE

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

568

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

GENDER, EMBODIMENT, AND DISEASE

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

DOMINANT EPIDEMIOLOGICAL PARADIGM

569

For EBCM activists, unlike for many mainstream activists, the

gendered experience of breast cancer leads them to experience their
disease not as a personal trouble to be dealt with through lifestyle
changes, but as a condition caused by social and environmental
factors that are shaped by powerful social institutions. Activist experience of gender differences and discrimination links illness experience and movement mobilization in the following dynamic process.3
Government policies, scientific knowledge, and private sector health
resources exist prior to a disease being discoveredor, in some
cases, prior to environmental causes being discovered or purported.
These factors trigger institutional processes that eventually lead to
the discovery and definition of a disease, assumptions about its
etiology that suggest particular treatments, and expectations about
acceptable health outcomes. These are the elements of what we call
the dominant epidemiological paradigm.
These pre-existing institutional beliefs and practices that shape
the discovery and understanding of a disease also shape the illness
experience for the affected population. When an affected population
is not satisfied with the government policies, scientific knowledge, or
private sector health resources that follow the discovery and
definition of the disease, they may mobilize to challenge the dominant paradigm. The mainstream breast cancer movement, for example, struggles to transform government policies, scientific
understanding, and public awareness to achieve better detection and
treatment. In addition to concerns about detection and treatment,
the EBCM is also dissatisfied with the current etiological understanding of breast cancer. But established institutionssuch as
government agencies and professional medical organizationscollectively produce a dominant paradigm that they have a stake in
preserving (Shriver et al., 1998). Disease groups challenge this
paradigm by entering the domains of science, policy, and the private
sector (e.g. the media).
Our analysis of breast cancers dominant epidemiological
paradigm demonstrates how structural processes, such as the application of institutionalized stocks of medical knowledge, shape health
social movements, and how gendered institutions such as science
and government impose obstacles to challenging such a paradigm.
We use the main components of a dominant epidemiological

570

SCIENCE AS CULTURE

paradigmgovernment policies, scientific knowledge, and private

sector actors like the mediato organize our analysis since these
components are also the primary avenues through which gender can
enable and constrain social movement actors.

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

DATA AND METHODS

A content analysis of 30 years of media coverage of environmental

causes of breast cancer, which we report elsewhere (Brown et al.,
2001), was used to identify the central themes and issues involved in
the research, policy, and activism surrounding breast cancer. We
used these themes to construct interview schedules that were used in
44 interviews with activists in organizations representative of the
EBCM in Massachusetts, Long Island, NY, and Californias San
Francisco Bay Area, and with scientists and researchers who had
worked with activists in their research. We used contacts in several
organizations to secure interviews, and relied on the snowball
method to fill out the rest. Our sample reflected the homogeneity of
the larger breast cancer movement42 of 44 interviewees were
Caucasian and could be described as middle class or higher. We also
conducted observations on 11 separate occasions to supplement the
interviews, primarily at Silent Spring Institute in Newton, MA, an
important location for research into environmental causes of breast
cancer. Observations included public meetings where the researchers
presented their work, scientific review panel meetings, and a conference that brought together scientists, activists, and government.
Finally, we relied on printed material and web-sites of the organizations in which we interviewed and observed, in order to characterize
their political stances and public activities. The data were analyzed
qualitatively using QSR NVivo. All unreferenced quotations and
data come from our interviews and observations.

GENDER AND MOVEMENT PROCESSES AND OUTCOMES

Environmental activism meets breast cancer activism

Widespread commitment to personal lifestyle factors has led to a

growing dissatisfaction among some women with breast cancer.
Meanwhile, the environmental movements successes in the 1980s
and 1990s led some of these women to contemplate how breast

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND DISEASE

571

Womens Community Cancer Project (WCCP) Mural on Cancer Activism.

Credit: The mural was co-created by Womens Community Cancer Project (WCCP) and
artist/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 Luisa
Alvarez, Agnes Barboza, Rachel Carson, Cindy Chin, Valerie Hinderlie, Audre Lorde,
Jeanmarie Marshall, Esther Rachel Rome, Myra Sadker, Susan Shapiro, Jaqueline
Shearer, and Thelma Vanderhoop Weissberg. Those who want to be on WCCPs e-mail
alert list can send their e-mail address to: wccp9@aol.com.

cancer and environment might be linked. The toxic waste movement

in particular, which had increased public awareness of the health
effects of toxics and focused on corporate responsibility, spurred
some breast cancer activists to begin considering environmental
causes. As new groups emerged, and some shifted their focus, the
EBCM was born.
Women have typically spearheaded grassroots toxic waste activism, and made up a majority of the movements leaders and
activists. These female leaders draw on unique experiences and ways
of knowing to shape their activism. Similar to the breast cancer
movements struggle to overcome gender biases in science and
medicine and assert the validity of female knowledge, the women
toxic waste activists struggle is centrally about the uses of knowledge and the validity of claims to recognition and authority as
knowers. Just as women toxic waste activists transform their everyday experiences into knowledge that they can use in the struggle

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

572

SCIENCE AS CULTURE

against toxic waste, insist[ing] on its validity as knowledge

(Brown and Ferguson, 1995, pp. 149, 151), so too do breast cancer
activists rely on their experiences with breast cancer to overturn the
detection, treatment, and prevention paradigms that are derived
primarily from the objective knowledge of the scientific process
(Fosket, 2000; Rosenbaum and Roos, 2000).
The mainstream breast cancer movement does not question
scientific authority or draw on experiential knowledge of women with
breast cancer in the same ways as the EBCM. The mainstream
movement tends to employ gender in terms of normative heterosexual feminine ideals of beauty and motherhood that can be used to
leverage sympathy and support. The EBCM, on the other hand,
takes a similar epistemological stance as the toxic waste movement in
order to assert womens ways of knowing as a valid basis for positing
possible links between toxics and breast cancer.
In the next section we use the three components of dominant
disease paradigmsscience, government, and the private sectorto
organize the presentation of our findings. We find that women in the
EBCM have pushed for research that is directly relevant, rather than
merely methodologically sophisticated, for researchers to be more
accepting of lay perspectives that stem from their embodied selfawareness, and for science and government to accept greater lay
involvement in research. They seek media attention for a disease that
strikes primarily women, but without sexualizing the coverage of that
problem. They put forth a broad perspective that includes moral
values and political economic critique, while still working in parts of
the political mainstream. Through all of this, they transform personal
experience into scientific knowledge and then into political action.

Breast cancer activists challenges to science and the biomedical model

The EBCM has consistently pushed for greater advocate involvement in the research development and review processes. Its successes
include getting advocates on review panels for research funded by
the state of California and the Department of Defense. Activists
bring their embodied knowledge to these processes, but also have to
work to overcome expectations that laypeople, especially women,
will undermine scientific processes with emotional or unfounded
concerns. They do this by constantly reminding researchers of the

GENDER, EMBODIMENT, AND DISEASE

573

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

reason for their research, which some scientists come to respect.

According to a California activist:
Ive seen review panels where there are three scientists and an
advocate, 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 Whats this have to do
with women living with breast cancer? Believe it or not, [the
scientists] go Oh yeah. Ive even seen them revise their
scores [in rating a proposal] on the basis of these discussions.
In this way, activists bring an embodied understanding to bear on the
scientific process, and are instrumental in shaping the accumulation
of scientific knowledge.
But this influence is only achieved when activists have overcome
the constraining effects of being preconceived by scientists and
others as hysterical women. Programmes such as the National
Breast Cancer Coalitions (NBCC) Project LEAD, which offers
intensive orientation programmes for advocates to enable them to
serve on grant review panels and scientific advisory boards, help
activists gain the respect of researchers and overcome constraining
gender stereotypes. As a result of this participation, many activists
report changes in their expectations about what science can prove in
terms of environmental causation and their perceptions of the length
of time necessary to conduct research. Participation in the research
process also helps activists overcome feelings of fear and anxiety
about scientists. As a New York activist explained:
The thing that I came away with that was most surprising was
how much the scientists and the MDs have come to value the
activist perspective on these panels. And not only just putting
a face on the statistics, but also that they appreciate when
you ask the questions Why is this relevant, Who cares?.
Traditional scientific canons of objectivity have only allowed certain
people the ability to conduct what is considered to be valid research.
Given this, one would expect there to be much reticence to include
advocates in research. As the following passages from interviews with
activists in Massachusetts and California illustrate, activists tend to
draw on their experience of prejudice against activist women to make
sense of scientists apprehensions:

574

SCIENCE AS CULTURE

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

I know that professionals like to build up their own aura

and arena so that it cant be pierced by anyone because after
all they paid the dues. But its nothing more than communication and relationships. Everything is understandable and
pierceable. The more people are willing to share their expertise, realizing that the others are not trying to replace their
expertise or their judgment, I think the more effective we can
be.
I think there is a respect for bright people and I think the
assumption often is that activists are going to be hysterical
women. And I think once most scientists realise that were not
hysterical women, they find themselves intrigued. And they
might come to the table with a lot of prejudices and worries
but I have rarely seen it continue to be a problem.
These excerpts capture the constraining and enabling aspects of
gender with respect to breast cancer activism. Preconceived ideas
about female activists lead some scientists to regard breast cancer
advocates apprehensively. Therefore, these activists focus on learning
the scientific vocabulary in order to minimize any tension that might
exist between scientists and advocates. Their challenge is to then
maintain an activist value-system that prioritizes the practical concerns of women with breast cancer, but not appearing too radical.
Even if activists forge positive relationships with researchers who
then take up questions of environmental causation, these researchers
are often discredited. In part, this is due to the fact that many of the
researchers interested in environmental links to breast cancer are
women themselves. This captures another sense in which gender is
both enabling and constraining. On one hand, the embodied knowledge these women bring to their research gives them different ways
of seeing problems, leads them to ask different questions, and
encourages them to accept as legitimate the knowledge that lay
activists bring to the research. On the other hand, as women working
at the margins of acceptable science, their work may not be taken as
seriously. As one female researcher from Silent Spring Institute
explained:
It is hard to get peoples attention when you are from Silent
Spring Institute and doing research about environmental factors in breast cancer. Its hard to break through and

GENDER, EMBODIMENT, AND DISEASE

575

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

get scientists attention You go through a kind of hazing

where you have to establish, by talking about what you are
doing, your credibility with each new member. You dont
have on your name tag, Harvard University. You really have
to go through a process of demonstrating your credibility.
While her stigma has more to do with her institutional identity in this
case, it is her gender identity that has led her to do the type of work
she is doing, in a feminist institution like the Silent Spring Institute
that values a gendered, multilayered approach to research. Breast
cancer research that gives voice to the personal experience of illness,
especially when these voices also challenge political structures, can
seem antithetical to traditional science.
The interview excerpts in this section illustrate that womens
gendered experiences within the institution of science create a
unique set of opportunities and obstacles to transforming the dominant paradigm. In contesting the dominant scientific practices used
to understand disease causation, environmental breast cancer activists bring to bear the uniquely integrated gendered experiences of
disease and movement participation.

Media, AIDS, and environmentalism: private sector components of the

dominant epidemiological paradigm

In terms of the media, gender again proves both constraining and
enabling. The newsworthiness of young women whose femininity is
threatened by breast cancer means that breast cancer gets four times
more coverage than prostate cancer, the next most popular cancer
topic for the media (Saywell et al., 2000). Yet the medias focus on
young women leads to less attention to older women who are at
greater risk (Burke et al., 2001). Though the sexualization of breast
cancer results in greater media coverage, a benefit the mainstream
movement covets, the more critical EBCM attempts to undo the
harm of sexualizing breast cancer.
The media is a key element of the private sector component of
the dominant epidemiological paradigm. If activists can generate
media attention, public awareness may reach levels justifying public
policies that support scientific research. But as our content analysis
of media coverage of environmental causation of breast cancer
suggests, the media actually perpetuate the dominant epidemiologi-

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

576

SCIENCE AS CULTURE

cal paradigms emphasis on lifestyle and genetic risk factors.4 Our

examination of 1,707 articles in daily newspapers, news-weeklies,
science periodicals, and womens magazines found that barely 6% of
them ever mentioned possible environmental causes. Not surprisingly, in those that do mention the environment, there is scant
attention to corporate and governmental responsibility. We also
found that articles often focus on individual responsibility for diet,
age at birth of first child, and other personal behaviours, as well as
on genetic causation (Brown et al., 2001). Fosket et al.s (2000)
content analysis of womens magazines coverage of breast cancer
during the twentieth century found similar results. Fosket et al.
(2000) and Saywell et al. (2000) also found that womens magazines
tend to sexualize the issue of breast cancer by depicting young,
feminine, and attractive women in their photographs and stories.
The medias sexualization of breast cancer, which relies on constructing the loss of a culturally valued part of ones sexual identity
as a tragedy, constrains EBCM activists by diverting public attention away from the bigger structural critiques made by the EBCM.
One of the strategies dissatisfied disease sufferers use to challenge
a dominant epidemiological paradigm is to work with other disease
groups or social movements. Environmental breast cancer activists
benefited from the feminist movement in terms of increased public
attention to womens issues, public pressure to fund research on
womens issues, an infrastructure of womens groups, tactics for
activism, and ideological foundations. The EBCM also emerged
from the womens health movement which over the past 25 years has
focused on increasing funding into research for womens illnesses,
educating women about their bodies, including women in clinical
trials, criticizing the medicalization of womens experiences, and
fighting for self-determination of health care options (Lorber, 1997;
Norsigian, 1996; Ruzek et al., 1997).
Early AIDS activists also benefited from the critiques first introduced by the womens health movement (Epstein, 1996). Subsequently, lesbian activists involved in the AIDS movement brought
organizing strategies into the breast cancer movement. These examples of movement overlap, in which membership, tactics, and even
forms of social critique are shared across movements, is similar to
what Meyer and Whittier (1994) term social movement spillover.
The environmental breast cancer activists have in turn borrowed

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND DISEASE

577

organizing and protest tactics from AIDS activists. One activist we

interviewed, in talking about her organization, provided a detailed
account of the way in which AIDS activism shaped the EBCM:
Originally, the founders of the organization were following the
lead of the NBCC and the AIDS activists in drawing attention to
the issue. And they became very vocal and held rallies and got
women empowered to do something. The AIDS movement has
been an exemplary model for EBCM activists in terms of demanding
lay involvement in research, as well as public education and social
protest. The methods utilized by AIDS activists, such as working
with researchers to change scientific study, provided an example for
future breast cancer activism. As Epstein (1996) reports, AIDS
activists in San Francisco, concerned that nave EBCM activists were
being misled by pharmaceutical companies, also helped breast cancer
activists learn the language of the drug companies and learn what
their rights were in terms of participation on advisory boards and
access to protocols.
However, unlike the predominantly male-driven AIDS movement, which began without extensive bodies of knowledge or frameworks for understanding the disease, this was not the case for gender
constrained women who challenged breast cancers dominant
paradigm. As a California activist explained, women with breast
cancer were faced with long-held beliefs about breast cancer causes
and treatments:
AIDS had a clean slate. There were no agencies already
working on the issue. Research agendas and policy were
getting framed as it went along. When the breast cancer
movement came along, the institutions were there. We were
dealing with changing pre-existing ways of dealing with the
disease. And, we were women.5
This activist added that while the AIDS movement was very focused
on treatment, were now fighting this environmental struggle, which
I would contend is much more difficult. Indeed, unlike with the
environmental breast cancer activists, AIDS activists demands for
better treatment options and more research were not a threat to the
political economy underlying the dominant paradigm, even though
they challenged social norms.
Finally, the predominance of women in the environmental and

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

578

SCIENCE AS CULTURE

toxic waste movements facilitated the link between breast cancer and
the environment. Environmental activists provided legitimacy for
environmental causation theories and offered an activist network that
could be utilized for support. Although the extent to which the
EBCM is formally linked with the environmental movement varies
by organization, the awareness created by a national grassroots
environmental movement provided a basis from which the public
could understand potential environmental causation and government
could recognize a constituency of voters.
Despite the support of the environmental movement, breast
cancer activists believe that corporate interests make it hard for most
cancer groups and agencies to focus on environmental causation. As
Breast Cancer Action puts it:
I think we are the first breast cancer organisation in the
country to make a corporate contribution policy. We dont
take corporate money that is related to pharmaceutical, hospital, chemical money, which is not an easy position to take I
think some breast cancer organisations are more reticent to
take some of our positions related to the environment and
industry connections.
This activists comments capture how EBCM activists consider
factors outside the individuals bodysuch as the political economythat might explain illness. Activists believe that the contemporary political economy engenders lax governmental regulations
that result in exposure to toxics and possible increases in breast
cancer rates. Their conceptualization of this relationship grew out of
links between breast cancer and environmental organizations. Meanwhile, the mainstream movements use of more conventional heterosexual feminine norms employs gender as a way to leverage resources
to support traditional scientific ways of knowing. In confronting the
political economy, the EBCM is forced to engage with government
entities, another component of the dominant epidemiological
paradigm, who are often vested in maintaining the dominant
paradigm. As we discuss in the next section, EBCM activists challenge the government policies and practices that define and support
the dominant paradigm of breast cancer.

GENDER, EMBODIMENT, AND DISEASE

579

Government policy and the dominant epidemiological paradigm

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

EBCM activists begin with the knowledge that getting research into
environmental causes requires asking the government to be a party to
research that has the potential to redefine the very economic progress
that government policy is designed to promote. One activist remarked:
Research in the environment is very controversial because
it forces us to question the way we live, how we make
decisions about industrial production promoting the notion
that more regulatory oversight of production needs to take
place, which also from a political perspective is very controversial.
This perspective requires EBCM activists to be committed to drawing the connection between science and ethics:
We really sort of push particularly scientists or policy-makers
to be honest about when an issue is a scientific one versus a
moral one When you choose to make a decision or take
action it is predicated on good science and ultimately is a
scientific decision whereas in reality when you really take
action doesnt have to do with science but has to do with
morality and politics. I think social movements have really
forced the regulatory and scientific communities to be a bit
more honest about that.
Though most activists engage in similar efforts to delineate
boundaries between science and politics, EBCM activists draw on
gendered ways of knowing that attempt to synthesize moral imperatives with scientific approaches. Activists are constrained by the
general assumption that science is objective and that women are the
opposite of objectiveemotional. Therefore, they walk a tightrope in
pushing scientists to see their own bias without appearing to be
emotional women.
For example, activists have worked within traditional political
channels to raise money for scientific research. The primarily white
and middle- to upper-middle class status of breast cancer activists
has provided them with access to essential resources. Some women,

580

SCIENCE AS CULTURE

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

as one activist explained, are married to politicians who became key

players in drafting and championing legislation for breast cancer care
and research:
You have frankly many more politicians family members
affected by breast cancer [than by AIDS]. Its that much more
prevalent a disease. So you cant just dismiss [it] There
seem to be many quoteunquote respectable people with
breast cancer in ways that were very different for HIV/AIDS.
So as a result you dont get the same kind of demonisation of
the activists.6
Environmental breast cancer activists also push for more research
into environmental causes by demanding opportunities to participate
on peer review panels that dole out government research funding.
The California Breast Cancer Research Programs model, in which
advocates work with scientists and clinicians to set research priorities
and determine the scientific merit of proposals, was adopted by the
Department of Defense when it received appropriations from Congress for breast cancer research (Brenner, 2000). Not only was this
a success in terms of ensuring advocate participation in the research
process, but with the help of Senator Tom Harkins (DIA), who had
experienced breast cancer in his family, the funds were placed in the
defence budget to ensure their protection during periods of budget
cuts.7
In the case of the governmental component of the dominant
epidemiological paradigm, gendered perspectives have shaped how
EBCM activists draw the line between scientific and political debates. In addition, for some EBCM activists the gender discrimination that has kept them out of politics has forced them to use their
ties to predominately male politicians to influence politics. In each of
the components of the dominant paradigm, in fact, gender operates
implicitly rather than overtly. From colouring their individual experiences of breast cancer, to shaping the collective identity and mobilization of environmental breast cancer activists, and finally to
influencing the movement strategies and tactics, gender discrimination figures into the challenges activists make to the dominant
epidemiological paradigm.

GENDER, EMBODIMENT, AND DISEASE

581

CONCLUSION: GENDERED BODIES IN CHEMICAL

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

ENVIRONMENTS

In transforming the personal into the political, environmental breast

cancer movement (EBCM) activists demonstrate how their status as
women positions them within social and economic structures in ways
that not only alter their experience and understanding of breast
cancer, but also their odds of getting it. This approach attempts to
overcome the current dominant epidemiological paradigm for breast
cancer in which (1) the media sexualize breast cancer by appealing
to the notion that the disease compromises femininity; (2) pharmaceutical companies commodify breast cancer by treating breasts as
problems detached from women and their marginalization within the
social structure; and (3) biomedical research objectifies female
breasts as objects to be observed in the laboratory and viewed as
separate from womens bodies.
While all breast cancer activists work to a certain extent to
overcome the sexualization and commodification of breast cancer,
environmental breast cancer activists are unique in their efforts to
overcome the narrow individual focus of the biomedical model, and
the objectification of the breast in that process. Instead of narrowing
their perspective solely to the breast, they attempt to place the
embodied experience of women in social and environmental contexts
that highlight the possibility of chemical exposures as causes of
breast cancer.
Our analysis of the enabling and constraining features of gender
for environmental breast cancer activists is useful for several reasons.
First, it demonstrates the importance of focusing on physical bodies
in a human-altered natural environment that subjects individuals to
different health threats according to their sex. The frequency with
which women get breast cancer, especially as compared to men, and
their unique experience of the disease, reflect how human bodies
interacting with their environments are endangered, diagnosed, and
treated in gender-specific ways. These gendered experiences in turn
shape illness group activism.
Second, the interaction of human bodies that occupy socially
constructed realities with environments shaped by ecological realities
provides insight into the larger body of environmental problems
facing humans, and how our responses to them might depend on the
gender of those affected. Rational-legal social systems problem-solve

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

582

SCIENCE AS CULTURE

by reducing complex phenomena to their component parts. We have

examined the EBCM in order to illustrate how the gender discrimination inculcated in the dominant epidemiological paradigm is contested by a womens movement that employs gender both as an
analytical tool and a feature of everyday lived experience. Understanding how the EBCM works to place womens bodies back into
social and environmental context is important as it highlights the way
in which gender discrimination forces activists to leverage certain
resources, and construct alternative discourses. Finally, the movements emphasis on locating breast cancer within the female body, as
opposed to in a laboratory, demonstrates how this particular case
study is tied to broader discussions in the history and philosophy of
science and the social studies of science about the distinction between the content and context of knowledge.
Third, in employing the concept of the dominant epidemiological
paradigm, we add to the growing body of literature on gender and
social movements by demonstrating how gender can be both enabling and constraining in terms of realizing movement objectives.
We do this in a way that illustrates the range of effects gender can
have: from the individual level of illness experience, to the structural
level of political process and movement strategies. Rather than
isolating gender effects to illness experience on one hand, or social
movement formation on the other, we show how gender processes
intimately link the two.
These contributions force us to ask how other variables, such as
race, class, and age, might interact with gender and each other to
shape illness experience, mobilization, and ultimately the role of
science and knowledge in a movements success. For example, what
role do these variables play in determining why some women focus
their energies on environmental causes of breast cancer, while others
participate only in the mainstream movement, and still others do not
become active at all? Perhaps older women suspect their cancer is
simply a result of old age, whereas younger women look for external
causes. Or, perhaps class-based issues are more important than
gender issues to some. Our analysis also raises questions about what
roles gender might play in other health conditions, as well as in
male-related health conditions. To answer these questions, social
scientists will have to develop better analytical understandings of the
interactions of social factors such as race, class, and gender with the

GENDER, EMBODIMENT, AND DISEASE

583

physical environments humans alter. Such understandings will likely

be vital if human societies hope to create equitable and sustainable
social systems in the future.

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

ACKNOWLEDGEMENTS

This research is supported by grants to the second author from the

Robert Wood Johnson Foundations Investigator Awards in Health
Policy Research Program (Grant #036273) and the National Science
Foundation Program in Social Dimensions of Engineering, Science,
and Technology (Grant # SES-9975518). We thank Rebecca Gasior
Altman, Meadow Linder, Theo Luebke, Josh Mandelbaum, Brian
Mayer, Rachel Morello-Frosch, Laura Senier, and Pamela Webster
for their collaboration in the larger project from which this work
derives, and their contributions to thinking about this paper. We
thank Chloe Bird and Susan Ferguson who commented thoughtfully
on an earlier version of this paper. We also are grateful to the
activists, scientists, and others who allowed us to interview and
observe them for this work.
NOTES
1. We do not consider the mainstream movement as some monolithic entity. We
call the EBCM a movement, rather than a wing of the mainstream movement,
because it crosses into environmental activism in a way that makes it patently
different from mainstream BC activism.
2. Throughout we use the concepts of women, womens experiences, and gendered experiences to refer to the predominately white and middle to upper
middle-class breast cancer activists we interviewed. Rather than universalize the
experience of women, we intend only to generalize to the experiences of the rather
homogenous group of women involved in the environmental breast cancer movement.
3. We do not provide evidence here of how gender shapes the experience of breast
cancer. 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 in
the environment if some of those chemicals are the products of their advertisers.
As reported by McManus (1994), advertisers that provide major financial support
are able to manipulate media content in spite of the tradition of freedom of the
press in the United States.
5. It should be noted that AIDS activists had their own set of obstacles, such as
the stigmatization of AIDS as a gay-related disease. Also, rather than beginning
with a clean slate, AIDS activists had to deal with the medical communities

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

584

SCIENCE AS CULTURE

tendency to try to understand AIDS in terms of existing knowledge about venereal

disease. Future research might look more closely at how gender and sexual
orientation interact in illness contestation by comparing and contrasting the cases
of breast cancer and AIDS.
6. We do not mean to construct the EBCM as a unified movement with a single
set of strategies and goals. For example, within the EBCM there are degrees to
which organizations are willing to take advantage of mainstream heterosexual
norms of femininity, including statuses as spouse of business or political leaders.
Long Island activists used such leverage when they got a Republic senator to work
to 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 such
social networks.
7. Despite this attempt to protect future funding for breast cancer research, in
2002 Congress appropriated $124 million to the Department of Defense programme, a $51 million reduction from 2001 appropriations.

REFERENCES
Brenner, 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 Epidemic, pp. 324354. New York: St. Martins Press.
Brown, P. and Ferguson, F.I.T. (1995) Making a big stink: womens work,
womens 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: 747775.
Burke, W., Olsen, A.H., Pinsky, L.E., Reynolds, S.E. and Press, N.A. (2001)
Misleading presentation of breast cancer in popular magazines, Effective
Clinical Practice, 4(2): 5864.
Einwohner, R.L. (1999) Gender, class, and social movement outcomes: identity
and effectiveness in two animal rights campaigns, Gender & Society, 13:
5676.
Einwohner, R.L., Hollander, J.A. and Olson, T. (2000) Engendering social
movements: cultural images and movement dynamics, Gender & Society, 14:
679699.
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 steelworkers in the Wheeling-Pittsburgh steel strike of 1985, Gender & Society, 12:
710728.
Fosket, J. (2000) Problematizing biomedicine: womens constructions of breast
cancer knowledge, in L.K. Potts (Ed.), Ideologies of Breast Cancer: Feminist
Perspectives, pp. 1536. New York: St. Martins Press.
Fosket, J., Karran, A. and LaFia, C. (2000) Breast cancer in popular womens

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

GENDER, EMBODIMENT, AND DISEASE

585

magazines from 1913 to 1996, in A.S. Kasper and S.J. Ferguson (Eds), Breast
Cancer: Society Shapes an Epidemic, pp. 303323. New York: St. Martins
Press.
Irons, J. (1998) The shaping of activist recruitment and participation: a study of
women in the Mississippi Civil Rights movement, Gender & Society, 12:
692709.
Klawiter, M. (1999) Racing for the cure, walking women, and toxic touring:
mapping cultures of action within the Bay Area terrain of breast cancer, Social
Problems, 46: 104126.
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 between
social movements: a strike of West Berlin day care workers, Gender & Society,
12: 626648.
McAdam, D. (1992) Gender as a mediator of the activist experience: the case of
Freedom Summer, American Journal of Sociology, 97: 12111240.
McCormick, S., Brown, P. and Zavestoski, S. (2003) The personal is scientific,
the scientific is political: the public paradigm of the Environmental Breast
Cancer Movement, Sociological Forum, 18: 545576.
McManus, J.H. (1994) Market-driven Journalism: Let the Citizen Beware? Thousand Oaks, CA: Sage.
Meyer, D.S. and Whittier, N. (1994) Social movement spillover, Social Problems,
41: 277298.
Montini, T. (1996) Gender and emotion in the advocacy for breast cancer
informed consent legislation, Gender & Society, 10: 923.
Norsigian, J. (1996) The womens health movement in the United States, in K.L.
Moss (Ed.), Man-made Medicine: Womens Health, Public Policy, and Reform,
pp. 7998. Durham, NC: Duke University Press.
Potts, L.K. (2000) Publishing the personal: autobiographical narratives of breast
cancer and the self, in L.K. Potts (Ed.), Ideologies of Breast Cancer: Feminist
Perspectives. New York: St. Martins Press.
Robnett, B. (1997) How Long? How Long? African American Women in the Civil
Rights Movement, pp. 98130. New York: Oxford University Press.
Rosenbaum, M.E. and Roos, G.M. (2000) Womens experiences of breast
cancer, in A.S. Kasper and S.J. Ferguson (Eds), Breast Cancer: Society Shapes
an Epidemic, pp. 153181. New York: St. Martins Press.
Ruzek, S.B., Olesen, V. and Clarke, A. (Eds) (1997) Womens Health: Complexities
and Differences. Columbus, OH: Ohio State University Press.
Saywell, C., Henderson, L. and Beattie, L. (2000) Sexualized illness: the newsworthy body in media representations of breast cancer, in L.K. Potts (Ed.),
Ideologies of Breast Cancer: Feminist Perspectives, pp. 3762. New York: St.
Martins Press.
Shriver, T.E., White, D.A. and Kebede, A. (1998) Power, politics, and the
framing of environmental illness, Sociological Inquiry, 68: 458475.
Stall, S. and Stoecker, R. (1998) Community organizing or organizing com-

Downloaded by [University Paris Diderot Paris 7] at 12:35 01 December 2014

586

SCIENCE AS CULTURE

munity? Gender and the crafts of empowerment, Gender & Society, 12:
729756.
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 womens
self-help movements, Gender & Society, 13: 833.
Taylor, V. and Van Willigen, M. (1996) Womens self-help and the reconstruction of gender: the postpartum support and breast cancer movements, Mobilization, 1(2): 123142.
Taylor, V. and Whittier, N. (1998) Guest editors introduction: special issue on
gender and social movements: Part I, Gender & Society, 12: 622625.
Taylor, V. and Whittier, N. (1999) Guest editors introduction: special issue on
gender and social movements: Part II, Gender & Society, 13: 57.