Sarah Roth //
Gracia Buffleben, a queer woman living with metastatic cancer, ascends the stage to receive an award at the Women and Cancer Walk. It is 1996 in San Francisco, and hundreds of women, families, and supporters sprawl in a park in the shadow of the Golden Gate Bridge. Tables are set up around a meadow, with advocates from feminist cancer organizations, women’s health organizations, and community health clinics distributing pamphlets and signing participants up for support groups. People walking through wear body piercings and tattoos, short hair, bared scars and prostheses. Women who have lost their hair from chemotherapy blend with those who have shaved their heads deliberately; the line between living with cancer and being cancer-free is not easy to discern. It doesn’t matter, some advocates say, as we are all at risk for cancer. Buffleben has recently worked with ACT UP activists to organize an act of civil disobedience against Genentech, a large biotechnology company, in order to win ‘compassionate use’ access to Herceptin, a promising new drug available only to women qualified for a clinical trial. As she walks onto the stage, members of ACT UP appear behind her, wearing black and holding posters with images of gravestones on them. “Don’t go quietly to the grave! Scream for compassionate use!”
“I am still alive,” Buffleben says. “But behind me are four women who have died, and behind each of those women are four women.”
Weeks earlier, the Race for the Cure, sponsored by corporations including Genentech, took place in this same meadow. At this 5K, breast cancer patients and survivors gathered to share stories and messages about successful treatments and the importance of early detection. While the Women and Cancer Walk and the Race for the Cure bore many similarities, the contrast between them is striking. To index cancer, pink ribbons and visors were replaced by black costumes; survivorship by an emphasis on death; and gratitude by anger. Beyond this park, groups of women protested carcinogenic industries with die-ins and punk vigils. This Breast Cancer Awareness Month, I’ll take a look at the complicated history of breast cancer activism in the U.S., as described in Maren Klawiter’s The Biopolitics of Breast Cancer. What can these movements – sometimes intersecting, and often in tension with one another – teach us about how to understand breast cancer advocacy in today’s world? What can they teach us about how to discern the kinds of health advocates we want to remember, foreground in our work, or strive to be?
There is an often-told story of the breast cancer advocacy movement in the United States. Told by D.C.-area cancer organizations and philanthropies, it follows the emergence and growth of the National Breast Cancer Coalition (NBCC) in the 1990s:
Founded in 1991 by a handful of women’s cancer organizations scattered across the country, the NBCC was created to address the inadequacy of scientific research on breast cancer; the lack of medical progress in treating, diagnosing, and preventing it; and the absence of the voices of breast cancer survivorship in breast cancer policymaking (Klawiter 2008, xxi).
In response to a lack of research focused on breast cancer, the story goes, the NBCC organized public marches, candlelight vigils, a demonstration on the lawn of the White House, and rallies where “breast cancer survivors,” a new collective identity and group of political actors, demanded more scientific research, medical progress, and public awareness of the disease. In its first year of lobbying, the NBCC secured a $43 million increase in breast cancer research. The year after that, they got $300 million more. Almost overnight, it seemed, a breast cancer movement had converged on Washington: storming the gates, forcing open the coffers, and elbowing its way to a seat at the table.
Sociologist and legal advocate Maren Klawiter’s (2008) work on breast cancer social movements complicates this picture, tracing “the dynamic relationship between the body politics of social movements and the biopractices of science, public health, and medicine” (xxv). Klawiter considers how activists entered the ‘domain of scientific fact-making,’ rather than simply storming its gates, influencing the form and texture of the scientific project of cancer. This work led to the expedited development of “clinically relevant trials with designs that research subjects would find acceptable,” which further contributed to changes in how research was conducted; the release of timely treatments; and shifts in what kinds of knowledge were deemed credible across domains of expertise (Epstein 341). In her careful study, breast cancer advocacy unfolds within the particularities of the Bay Area, a thick web of local organizations and relations, with wide-ranging interests, technologies of the body, and dispositions towards science.
At the beginning of the twentieth century, following an era of ‘therapeutic pluralism,’ cancer care is said to have moved from the home to the hospital. As physicians consolidated power, medical education was reformed, and networks of hospitals were built, women’s bodies and bodily processes came under the diagnostic eyes of clinicians. Meanwhile, shaped by the rise of surgeons such as William Halsted at Johns Hopkins, breast cancer was conceptualized in elite medical settings as a local disease made ‘curable’ through radical surgery. In 1905, the American Medical Association brought together a committee to prepare a report on cancer mortality. First, they recommended that physicians be educated about cancer; second, they recommended that women be educated as well (Klawiter 63). In 1913, the American Society for the Control of Cancer (ASCC), which would later become the American Cancer Society, was founded. The ASCC launched an educational campaign targeting middle- and upper-class white women and their general practitioners, communicating the importance of overcoming a fear of surgery and any skepticism about its efficacy (Aronowitz 2007). This public health campaign unfolded parallel to emerging medical discussion around the category of ‘precancer’ as a site for intervention. English physician Janet Lane-Claypon wrote in 1920 that “it can hardly be doubted that an operation in the precancerous stage would rob cancer of the breast of most of its dangers, and the percentage of cures be greatly increased” (153). Progression of cancer and death could be blamed on delays in surgery. For women and their doctors, the idea of ‘delay’ linked the ideas of individual responsibility and good outcomes.
By the 1960s, public health campaigns expanded beyond ‘do not delay’ campaigns to focus on the mass surveillance of women without major symptoms of breast cancer. Women were enlisted into regimes of routine screening through campaigns such as the Breast Cancer Detection Demonstration Project (1973 – 1978), the first field campaign launched by the National Cancer Program, which introduced millions of women to mammographic screening. Cancer surveillance extended a “quest for definition, identification, and intervention” to increasingly early points in women’s personal histories of breast cancer (210). As historian Ilana Löwy (2010) writes, people with minor symptoms – a small lump, an unusual mole – began arriving to the clinic in fear. The experience of being a cancer patient became increasingly “that of a healthy person who becomes sick as a result of a medical intervention,” rather than that of a sick person who mitigates their symptoms of cancer (9). Increases in detection did not, interestingly, improve breast cancer mortality rates amid these sweeping changes. But it did allow for a sense of collective relation around breast cancer risk: a shared experience of those with and without clear diagnoses of pathology.
Following these shifts in cancer care and surveillance, breast cancer activism in the 1980s and 1990s emerged as a field that brought together asymptomatic, at-risk populations with those with cancer, in remission, and living with chronic disease. In The Biopolitics of Breast Cancer, Klawiter studied the fields of contention that emerged within the broader field of activism. Each ‘field’ framed risk, and its relationship to medical care, as linked to different elements of their social worlds. The early detection community, adorned with pink ribbons, instrumentalized a dominant narrative around individual risk of cancer. Advocates saw lack of access to screening as the central problem faced by women with cancer. They were respectful of institutional science and labored to increase funding for pilot projects and raise awareness of the need for all women to be screened. While they celebrated emerging research, the early detection community was hesitant to push for radical change within the scientific establishment, and reinforced norms around diagnosis and therapeutics. On the other hand, the feminist patient empowerment community, marked by ‘cancer sucks’ buttons, saw a patriarchal medical establishment as the central problem to be overcome. Influenced by second-wave feminism, this group critically appraised the role of experts in scientific production, and – as evidenced by moments like Buffleben’s direct action against Genentech – urged the decoupling of industrial interests and barriers to patient access. But this community also saw participation in clinical research as a path to patient empowerment. A third group, the cancer prevention community, waved skull and crossbones signs to protest toxic outputs and organized in the name of environmental justice.
The early detection campaigns of the 1990s were continuous with many elements of the ‘do not delay’ campaigns of earlier decades and drew inspiration from large-scale public health projects. But this moment also featured a “full-bodied, three-dimensional, participatory” field of action for women across the breast cancer spectrum (Klawiter 134). New actors came to the stage: patient groups “mobilized hope and solidarity, faith in science and medicine, and respect for healthcare professionals” (134). In her descriptions of this group, Klawiter emphasizes the ease with which corporate enterprise in the United States took on breast cancer screening as a cause to celebrate. In turn, the women who came onboard as advocates for screening – acting and remembering as a collective – tended to celebrate corporate norms. These groups privileged the identity of ‘breast cancer survivor’ and tied this identity to the physical display of heteronormative femininity. Klawiter describes the 1996 Race for the Cure, a convergence of corporate sponsorship, messaging regarding the importance of surveillance, and memorials for women who had recently died of breast cancer. One way to publicly honor women with breast cancer was provided at the registration tables: instead of wearing numbered forms, participants could wear “In Honor Of” or “In Memory Of” forms displaying the names of women, living or dead, on their backs. Like the visors that participants wore, these were pink, and identified wearers as part of an “expanding circle of those whose lives have been touched by breast cancer”:
The practice of wearing a sign was a way of enacting community, a way of including oneself in the sea of sympathizers, sufferers, and survivors working together to raise awareness of breast cancer and money for medical research and mammographic screening. The signs and visors…signified the public display of private losses and personal triumphs. Wearing them was an emotional act at once painful, brave, and hopeful. These moving displays enhanced the intensity of the experience of moving en masse through the park with thousands of strangers united by their relationship to this disease (143).
For participants of the Race for the Cure, breast cancer was an object bound in a complex of past and future feeling: grief for the past enmeshed with optimism in a future cure. Those who ran tended to be invested in individual medical care and collective survivorship, and displays of private losses and personal triumphs were part and parcel of this collective. Meanwhile, the message of the official program, emceed on stage by a woman in a pink visor, was clear. The solution to breast cancer lay in two directions, she shouted: biomedical research and early detection.
Women and gender diverse folks with advanced disease, and with little hope of remission, were rarely given the microphone at events such as the Race for the Cure. Jackie Winnow was an AIDS activist with breast cancer that had metastasized to her lungs and bones. Aware of the gaps and silences that characterize the landscape in which people with stigmatized illness live and struggle to survive, she sought to galvanize a different kind of women’s cancer movement. She stepped up to receive an award at the 1989 Conference for Lesbian Caregivers and the AIDS Epidemic. “Cancer,” she said on the stage, “has become an unacceptable epidemic. And as someone who has metastatic breast cancer, that is unacceptable to me” (Winnow 1989). In her work, Winnow drew attention to the neglect she felt in seeking care. “You wait endlessly for a support group, which if you are a lesbian, a woman of color, working class, or believe in alternatives, you don’t fit into anyway.” She pointed to the ways in which the San Francisco lesbian and gay communities had mobilized in the midst of the AIDS crisis. She urged these communities to expand the AIDS model of organizing to serve women with cancer, and people with other life-threatening illnesses, in “the growing epidemic” (Klawiter 2008). Winnow went on to bridge her work as an AIDS activist with cancer organizing, founding the Women’s Cancer Resource Center with an explicitly feminist mission.
This group, which joined together with Breast Cancer Action and local organizations to fund the Women and Cancer Walk, became known for its critiques of early detection campaigns; rejection of overtly cheerful stories dominating the media; adoption of a watchdog stance with the medical establishment; and emphasis on direct services for women with cancer. In artwork on display at events like the Women and Cancer Walk, the possibilities on display for women’s identities differed radically from more mainstream events. At the Women and Cancer Walk, women were constituted as individuals with complicated commitments and biographies, through a “narrative of suffering, poverty, and dislocation, not a discourse of individual choice and responsibility, not a story of triumph and survival” (185). Art collectives like Art.Rage.Us, a juried show organized by the founder of Breast Cancer Action, emerged from this sphere of the movement. So, too, did combustive poetry like Audre Lorde’s, which held up experience of suffering from cancer as a call to collective action.
“What would happen if an army of one-breasted women descended upon Congress and demanded that the use of carcinogenic, fat-stored hormones in beef-feed be outlawed?”Audre Lorde, The Cancer Journals
In 1995, the Southeast Alliance for Environmental Justice (SAEJ) formed in Bayview-Hunters Point, a low-income and primarily African American neighborhood in San Francisco. The group was founded to mobilize against the proposed siting of a new power plant in the neighborhood, which was already marked by two such plants. In response to community concerns, the San Francisco Department of Health conducted a community environmental and health assessment. In doing so, they found that breast cancer rates for African American women under the age of fifty were 50% higher than expected, the highest in the city. Word of the report got out, and the information within it was circulated at a women’s environmental health conference. A petition requesting a moratorium on polluting facilities in the neighborhood was drawn up, signed, circulated, and delivered to the San Francisco Board of Supervisors. The release of the health assessment report resulted in a number of changes at the local level: the Board approved the moratorium, established a Health and Environmental Task Force, and proclaimed a collaboration between neighborhood residents and the local Department of Public Health.
As the Health and Environmental Task Force set out to address the links between risk of breast cancer and the toxic environment in Bayview-Hunters Point, the group became a lightning rod for controversies involving community representation, the conflict between lay and expert knowledges, the politics of epidemiological research and risk-assessment science, and the tension between studying the problems of pollution and ill health and doing something about them. For instance, when additional studies did not confirm residents’ beliefs that they were being made sick by their environment, they became increasingly mistrustful of the Department of Public Health’s motives and the legitimacy of the research project it was carrying out. Increasingly frustrated by the gap between experiential and epidemiological knowledge, community activists began to argue for solutions that did not depend upon ‘unimpeachable’ findings that the environment was causing their heightened rates of breast cancer. They demanded that, no matter what the evidence, toxic sites be cleaned up, emissions be better regulated, and community access to healthcare be expanded.
A number of organizations formed at the local and national level to articulate and protest links between carcinogens and cancer in the 1990s: the Toxic Links Coalition, California Zero Dioxide Exposure Alliance, Californians for Pesticide Reform, Health Care without Harm, and many more. Across organizations, confrontational politics and public protests were key strategies within the cancer risk and environmental activism movement. This fostered alliances with participants in the patient empowerment movement such as Breast Cancer Action and the Women’s Resource Center, but drew away corporate professionals who had, at this time, assumed leadership positions in mainstream cancer advocacy organizations. Andrea Martin of the Breast Cancer Fund, who had previously been involved with several organizations, cut ties over methods of protest. As an advocate-professional, she preferred wining and dining potential partner institutions over more confrontational work. On the whole, these environmental health organizations strategically wielded scientific discourses. At the same time, they viewed calls for additional research as tactics employed by industry to delay regulation of carcinogenic production. And, importantly, they called attention to the injustice of unevenly distributed illness and death.
Studies of patient activism encourage us to consider the making of medical knowledge when science is closely scrutinized by attentive spectators. They also interrogate how the boundaries of biomedicine are shifted when the ‘bodies’ of research subjects ‘talk back.’ They do so by exploring moving poles and stakes of expertise, shifted and mobilized at moments of urgency. In the case of breast cancer activism in the 1980s and 1990s, risk became at once a medical and political category, with multivalent meaning taken on as movements diffracted to address individual risk, unequal access to care, and uneven environmental toxicity. Through the consolidation of a ‘knowledge empowered’ community, screening activists became central to decision making around cancer research and treatment. On the other hand, community activists, disillusioned with the pace of research, pushed for action and social change.
For those of us wondering how to get involved this Breast Cancer Awareness Month, it’s important think about the multiple traditions of activism that have shaped the recent history of breast cancer social movements. What do we want to raise awareness of? What kinds of activist traditions do we want to further? When considering organizations to donate to, products to buy, or institutions to affiliate ourselves with, it’s important to reflect on the broader social context to which we belong. Guided by these reflections, we will be better able to move forward with actions to create a better world for those affected by breast cancer.
Aronowitz, Robert. Unnatural History: Breast Cancer and American Society. Cambridge University Press, 2007.
Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. University of California Press, 1998.
Klawiter, Maren. The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism. University of Minnesota Press, 2008.
Löwy, Ilana. Preventative Strikes: Women, Precancer, and Prophylactic Surgery. Johns Hopkins University Press, 2010.
Lorde, Audre. The Cancer Journals. Aunt Lute Press, 1980.
Winnow, Jackie. Conference speech, as printed in “Lesbians Working on AIDS: Assessing the Impact on Health Care for Women,” Out/Look 2, Summer 1989.
Zimberg, Abby. “ACT UP and breast cancer activists at the 1995 Women and Cancer Walk.” Photograph courtesy of the Women and Cancer Walk.