Breast cancer in two regimes: the impact of social movements on illness experience
Maren Klawiter, School of History, Technology, and Society, Georgia Institute of Technology, Atlanta, Georgia 30332-0345 USA e-mail: email@example.com
This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. This article explores the impact of social movements on the regime of breast cancer and makes four contributions to the scholarship on illness experience. First, it offers the concept disease regime as a way of conceptualising the structural shaping of illness experience. Second, it demonstrates the value of incorporating social movements more thoroughly into the study of illness experience. Third, it proposes that social movements change illness experiences in two ways: (1) by changing the sufferer or her relationship to the regime's practices; and (2) by changing and expanding the regime's actual practices. And fourth, it demonstrates how gender and sexuality are constituted within disease regimes and are challenged by social movements. This article is informed by four years of ethnographic research conducted in the San Francisco Bay Area between 1994 and 1998, supplemented by historical research and more than 40 taped interviews and oral histories with current and former breast cancer patients, activists, educators, scientists, support group leaders and volunteers.
This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. The regime of breast cancer has undergone a series of dramatic changes over the course of the last three decades and these changes are, in large part, the result of social movements. This article examines the impact of social movements on the regime of breast cancer and experiences of illness, paying particular attention to the ways in which gender and sexuality are constituted within disease regimes and challenged by social movements.
Clara Larson (not her real name) was 56 years old when I interviewed her in the San Francisco Bay Area in 1998. A white, middle class lesbian, divorced, a feminist, and the mother of four adult children, Clara Larson was first diagnosed with breast cancer in 1979, at the age of 37, and then again in 1997. Her narrative thus provides a window onto changes over time in the regime of breast cancer. There is nothing about Clara Larson that is ordinary or average. Likewise, the field of social movements in the San Francisco Bay Area is in no way representative of any other region or arena of activism. I view these anomalies as analytic assets, however, not as disadvantages. Clara's lesbian identity and feminist sensibilities constitute an ‘outsider within’ perspective (Collins 1999) that helps illuminate the ways in which gender and sexuality were embedded, embodied, imposed and exercised within the Bay Area regime of breast cancer. In like fashion, the depth and dynamism of the Bay Area field of activism helps reveal the remarkable extent to which disease regimes and illness experiences can be reshaped by social movements.
Between the early 1970s, when Clara received her first screening mammogram, and the late 1990s, when Clara was diagnosed with metastatic disease, an important set of changes took place in the regime of breast cancer. During the 1970s and 1980s, controversies over specific medical practices – mammographic screening, informed consent, the ‘one-step’ procedure and the radical mastectomy – resulted in specific changes in the regime of practices (see Bailar 1976, Rennie 1977, Kushner 1977a, 1977b, 1986, Ross 1987, Montini and Ruzek 1989, Montini and Slobin 1991, Montini 1996, 1997, Leopold 1999, Lerner 2000, 2001, Weisman 2000, Centers for Disease Control and Prevention 2000). Some of these changes were tied to Consensus Development Conferences held by the National Institutes of Health (NIH). Others were codified in state and federal legislation. For the most part, however, the breast cancer activism of the 1970s and 1980s consisted of small, narrowly targeted and fleeting mobilisations fed by the ideologies, networks, and sometimes the organisations of pre-existing social movements – feminism, the women's health movement, the patients’ rights movement and the consumer movement (see for example Montini 1996, 1997). The changes inspired by these targeted mobilisations were important, but they did not result in the formation of a breast cancer movement with its own organisations, activists, analysis, identity and agenda (Klawiter 1999b: 57–69, Leopold 1999: 188–214).
What changed during the 1990s was the scale and scope of breast cancer activism. These changes included the rapid growth in the number, size and funding of women's cancer and breast cancer organisations; the development of new discourses, cognitive frameworks and other forms of cultural production; the proliferation of new projects, campaigns and coalitions; and the cross-fertilisation of the breast cancer and environmental movements. A great deal has already been written about the history of the National Breast Cancer Coalition (NBCC) and its tremendous success in the federal legislative and policy-making arenas – lobbying to increase federal spending on breast cancer research, promoting the expansion of breast cancer screening programmes for low-income women, and gaining a ‘seat at the table’ where research funding decisions were being made (see especially Ferraro 1993, Dickersin and Schnaper 1996, Weisman 2000). The popular media attention generated by the NBCC no doubt contributed a great deal to the US public's growing awareness and support of the breast cancer movement. But the NBCC was not an important player in the San Francisco Bay Area field of social movements, where I conducted my research between 1994 and 1998. What I discovered instead was a dynamic ‘field of contention’ (Crossly 1998, 2003) fed by a diverse assortment of organisations that coalesced into three different ‘cultures of action’ (Klawiter 1999a, 1999b).
Each of these cultures of action challenged and changed the Bay Area regime of breast cancer. The success of these challenges was evident in the thoroughly transformed public discourses, emotional vocabularies, popular images and collective identities through which breast cancer – at least for urban, middle class white women in the San Francisco Bay Area – was navigated, negotiated, interpreted and experienced. This occurred through the efforts of mainstream organisations such as the Susan G. Komen Breast Cancer Foundation and its signature event, Race for the Cure®, which attracted thousands of participants to Golden Gate Park every year (beginning in 1991) to celebrate the beauty, strength and enduring femininity of ‘breast cancer survivors’, to raise money for medical research and to fund mobile mammography vans to provide mammograms to low-income women. The mainstream movement was so successful in transforming the public discourse of breast cancer that leading names in corporate America, especially the beauty, fitness and fashion industries, adopted breast cancer as their cause celebre1. These developments had a significant impact on the regime of breast cancer. Breast cancer awareness ribbons (pink), pins, T-shirts, cosmetics, clothing, shoes, athletic gear, fashion shows, walk-a-thons, swim-a-thons, races, hikes, climbs and other public events and campaigns challenged the architecture of the closet that had confined earlier generations. The mainstream breast cancer awareness movement replaced the stigmatisation, isolation and invisibility of women with breast cancer with a new public culture overflowing with symbolic gestures of support, solidarity, respect and recognition. The public identity of women with breast cancer was transformed from tragic victim to heroic survivor. The public image of the new breast cancer survivor, unlike the victim of yesteryear, was a woman whose femininity, sexuality and desirability were intact; a woman who had struggled bravely and victoriously against the disease (which, ideally, was diagnosed early, due to her disciplined practice of ‘breast health’ and rigorous observation of screening guidelines), and whose survival was therefore assured. Gender and sexuality were intimately bound up in these social and cultural transformations.
In addition to the more mainstream, corporatised wing of the breast cancer movement, lesbian, feminist and environmental activists politicised the issue of breast cancer in the San Francisco Bay Area. A number of organisations were involved in this effort. The longest established of the bunch, the Women's Cancer Resource Center, was founded in 1986 by Jackie Winnow, a feminist, lesbian and AIDS activist. In 1990, Breast Cancer Action, a pioneering feminist treatment activist organisation, was founded by a group of women who met in a support group for women with metastatic breast cancer. In 1991, the Breast Cancer Fund was founded by Andrea Martin, a businesswoman and a feminist twice diagnosed with breast cancer. That same year, inspired by AIDS activism, three lesbians founded the Women and Cancer Project to raise money for local organisations. The Charlotte Maxwell Complementary Clinic, founded in 1991, provided free alternative and complementary cancer therapies to low-income women. In 1994, feminist cancer organisations teamed up with environmental justice organisations and created the Toxic Links Coalition, a synthesis of the two which quickly expanded to include a wide-range of environmental and cancer organisations. Inspired by the activism of the Toxic Links Coalition, Marin Breast Cancer Watch, an environmental breast cancer organisation, was founded in 1995.
Feminist and environmental breast cancer activism in the San Francisco Bay Area operated along multiple dimensions – providing free services, support and complementary therapies to women with cancer, staging public events, political protests, educational forums and art exhibits, lobbying the state legislature for breast cancer research funding and greater access to breast cancer screening and treatment for low-income women. Feminist breast cancer activism also challenged the optimistic narratives, images and emotional displays of the mainstream movement. In this culture of action, women with histories of breast cancer were more likely to speak of ‘living with cancer’ than being a ‘survivor’. Many women with mastectomies did not wear breast prostheses and, rejecting the idea of putting a pretty bow on an ugly reality, they rarely wore pink ribbons – though many wore the ‘Cancer Sucks’ buttons designed by Breast Cancer Action. They were sceptical of the effectiveness of mammographic screening, angry at the government and critical of the medical research establishment.
Feminist cancer organisations in the San Francisco Bay Area had, since their inception, promoted an environmental analysis of breast cancer. This focus intensified during the second half of the 1990s, as the feminist cancer and environmental movements began working together on a number of different projects (see Klawiter 2003). Some organisations, like The Breast Cancer Fund, organized a Bay Area environmental study group and sponsored research on breast cancer and the environment. Others, like the Toxic Links Coalition, Breast Cancer Action and the Women's Cancer Resource Center, were more oriented toward direct action and public protests. Marin Breast Cancer Watch embarked upon its own research projects, for which it eventually secured funding from the state (of California). Overall, this organisational field shared a common goal of linking the growing incidence of breast cancer (and cancer generally speaking) to environmental pollution and corporate profits.
Elsewhere, I have emphasised the differences between mainstream, feminist and environmental activism in the Bay Area, but here I want simply to recognise their collective impact on the regime of breast cancer and the illness experiences available to women residing within and passing through it. Certainly, these changes were not experienced in the same way or to the same degree by every woman. Subject positions and social locations – age, race, class, culture, ethnicity, sexual identity, religion and political convictions – also shaped women's relationship to the regime of breast cancer. But every woman diagnosed with breast cancer in the Bay Area during the late 1990s encountered a different set of conditions – a different regime of practices – from the generations that preceded them.
The remainder of this article is organised as follows: in the next section, I locate this study within the scholarship on illness experience, develop the concept of disease regime and explore the relationship between disease regimes, social movements and illness experience. A section on research data and methods follows. I then proceed to the heart of the matter, the illness experience of Clara Larson. Divided into two parts – 1979 and 1997 – Larson's narrative focuses our attention on key changes over time in the regime of breast cancer and the impact of social movements on her illness experience. I conclude with some reflections on the contributions of this study to the current state of theorising about illness experience.
Disease regimes, illness experience and social movements
In a recent review of the literature on illness experience, Janine Pierret (2003) identifies ‘the social structure’ as ‘the problem to be analyzed’ (2003: 17). Pierret calls for research that moves beyond the simple examination of structural factors in order to show how these structural factors actually shape the illness experience (2003: 15). Pierret also identifies the role of patient organisations as one of the key areas in which ‘work remains to be done’ (2003: 16) and she calls for new paradigms that work out the interrelationships between social structures, cultural factors and subjective experience. This article responds to Pierret's call for new research and frameworks that address the relationship between social structures and illness experience. It also responds to Pierret's call for more research on the role of patient organisations. In place of patient organisations, however, I broaden the focus to social movements. In place of social structures I analyse disease regimes.
The concept of disease regime is derived from Foucault's (1987)‘regime of practices’. Foucault uses this term to refer to an apparatus of practices organised around a shared problematic. In Discipline and Punish (1979) for example, Foucault analysed regimes of punishment. In History of Sexuality (1978), he analysed modern sexuality. In both instances – and in his historical investigations of madness (1965), public health (1980) and medicine (1973)– the ‘target of analysis’, as Foucault puts it, ‘wasn't “institutions,”“theories,” or “ideology,” but practices’ (1987: 102). Within Foucault's framework of analysis, practices ‘are not just governed by institutions, prescribed by ideologies, guided by pragmatic circumstances – whatever role these elements may actually play – but possess up to a point their own specific regularities, logic, strategy, self-evidence, and “reason”’ (1987: 103). Ultimately, as Foucault argues, the task of the investigator (or genealogist) is the analysis of these regimes. Although Foucault repeatedly claims that ‘where there is power, there is resistance’, he focuses his own analysis on power, not resistance.
Scholars such as Robert Castel (1991), David Armstrong (1993, 1995), Deborah Lupton (1995), Alan Petersen (1997, with Lupton 1996) and Robin Bunton (with Burrows 1995, with Petersen 1997) have drawn on Foucault with great success in their research on regimes of public health and medicine. This article is indebted to the work of these scholars. But as is the case in Foucault's own work, scholarship in this tradition tends to portray regimes of public health and medicine in rather totalising terms. In part, this is because the lived experience of health and illness –‘history from below’ in Roy Porter's (1985) terms – is largely absent from the analysis. In part, it is because social movements and other forms of collectively organised resistance are not foregrounded. The concept of disease regime, as I deploy it here, draws on the insights of this Foucauldan tradition but departs from its totalising view of power.
Some disease regimes are totalising, others less so. Some regimes are anchored in multiple institutions. Others are less expansive. Although they are relatively structured and stable, disease regimes are subject to a wide variety of cross-cutting pressures. Some of these pressures originate within the powerful industries and institutions in which they are anchored – the healthcare, insurances and pharmaceutical industries, for example, as well as the institutions of science, medicine, the state, popular culture and the media. Others originate in the non-establishment approaches of medically marginalised traditions – folk medicine, alternative treatment modalities, unorthodox science and non-Western epistemologies of health, disease and the body2. Still others originate in the counter-narratives and practices of social movements. All of these are important, but this article focuses on those forces of change that originate in social movements.
In my formulation, disease regimes are comprised of the institutionalised practices, authoritative discourses, social relations, collective identities, emotional vocabularies, visual images, public policies and regulatory actions through which diseases are socially constituted and experienced. Because social movements are capable of affecting each and every one of these dimensions, they can have profoundly transformative effects on disease regimes. Not all social movements are equally powerful, of course, nor do all social movements work along each and every one of these dimensions. Some social movements target the formal political arena, impacting on public policy, regulatory practices and judicial decisions. Others achieve their greatest impact in the cultural arena, changing the popular images, ideas, emotions and identities associated with a particular disease, creating new representations and alternative ways of seeing and experiencing the disease and constructing new collective identities. Other social movements (‘self-help’ movements, for example) achieve their greatest impact by altering the social relations of disease – creating new social spaces, networks, scripts and subjectivities – changing the sick role and social interactions with friends, family, physicians and even strangers. Even social movements that do not change specific practices within a disease regime can have an impact on an individual's illness experience by transforming her perceptions of, and relationship to, practices of the regime.
Finally, we know that all social institutions are shaped by, and shape, gender and sexuality (Connel 1987, Lorber 1994). We know that illness experiences are mediated by gender (Ruzek 1978, Doyal 1995, Lorber 1997). And we know that gender is a pervasive feature of social movements (see especially Taylor 1999, also Brown and Ferguson 1995, Ferree and Martin 1995, Gamson 1997, Ferree and Roth 1998, Fonow 1998, Naples 1998, Ray 1998, 1999, Klawiter 1999a). This article builds on this foundation by exploring the ways in which gender and sexuality are constituted within different regimes of breast cancer, shape illness experiences, and are challenged by social movements.
Data and methods
Clara Larson's illness narrative is to the foreground in this article, but my method is not that of narrative analysis (see Lawton 2003, Pierret 2003, Bury 2001, Frank 1995, Kleinman 1988). I do not analyse the narrative as narrative, but rather as a more or less accurate and apt representation – which is also, of course, a partial and situated perspective – of a particular disease regime at two different moments in time. Extending Troy Duster's (1989) notion of the structural anecdote, I treat Larson's testimony as a structural narrative. In this case, the structure in question is the regime of breast cancer.
This is not a naive reading of Larson's testimony, however, because Clara's illness experience does not constitute the main source of evidence for the arguments and analysis that I develop. Following the extended case method (Burawoy 1991, 1998), I mobilise Larson's narrative to illustrate and illuminate a larger story about the impact of social movements on disease regimes and illness experience. I mobilise this larger story, in turn, to address weaknesses in the current state of theorising about illness experience (see Pierret 2003) and contribute to their reformulation. The evidence for this larger story is based upon original ethnographic and historical research and informed by existing scholarship.
In this article I situate Clara Larson's narrative within the San Francisco Bay Area field of social movements. My understanding of this field is based upon four years of ethnographic research in the San Francisco Bay Area, conducted between 1994 and 1998. This research included the observation of women's cancer support groups (a total of four groups, in four different organisational settings, for periods of time ranging from two months to two years) and participant observation in a range of locally-based social movement organisations, networks, projects, fundraisers, cultural events, educational forums, environmental protests, street theatre, public hearings, community-based early detection campaigns, conferences and symposia. This ethnographic research was supplemented by secondary historical research and more than 40 taped interviews and oral histories of current and former cancer patients, activists, educators, scientists, support group leaders and volunteers in the San Francisco Bay Area. In addition to these original sources of data, my analysis is informed by breast cancer narratives written by patients, survivors and activists; studies of breast cancer activism and the women's health movement; studies of breast cancer illness narratives and illness experiences; studies of breast cancer in popular culture; and historical research on early detection campaigns and the medical management of breast cancer3.
Breast cancer in two regimes
The disease regime that Clara Larson faced when she was diagnosed with breast cancer in 1979 was one that emerged in the early part of the 20th century and held sway until the 1970s, when it gradually began to shift. By the time Clara Larson was diagnosed with breast cancer for the second time, a new regime of breast cancer had taken shape in the San Francisco Bay Area. This section explores those changes, as seen through the eyes of Clara Larson.
The first part of Larson's narrative illuminates some of the defining qualities of the earlier regime of breast cancer, even as it was beginning to change. These include the sovereign power of physicians (surgeons in particular); the isolation, normalisation and disempowerment of patients; the hegemony of gender normative and heteronormative assumptions about female embodiment, attractiveness and sexuality; the invisibility of women with breast cancer and ‘mastectomees’ in the public domain (despite the public disclosures of a handful of celebrities) and the absence of a group identity. This earlier regime was indeed rather totalising, but Larson's narrative reveals how her lesbian identity and feminist experiences and sensibilities provided her with the intellectual tools and the social and emotional resources to maintain a critical distance – a self-protective barrier of sorts – from the technologies of control and normalisation that she encountered.
The second part of Larson's narrative illuminates some of the defining qualities of the second, emergent regime. These include the dethroning of surgeons, the replacement of the surgeon-patient dyad with a web of relationships, the expansion of patients’ access to medical information and their right to fully participate in medical decision-making; the creation of new social spaces, services and resources for women with breast cancer; the growing visibility of breast cancer patients and ex-patients in the public domain, the emergence of new collective identities and the development of a multi-stranded and multi-dimensional breast cancer movement.
Clara Larson in 1979: domination, isolation and the limits of resistance
In the early 1970s, when she was in her early thirties, Clara Larson followed the advice of her obstetrician/gynecologist and scheduled her first mammogram. Mammograms had been used as a diagnostic tool since the 1950s, but it was not until the 1970s that the National Cancer Institute (NCI) and the American Cancer Society (ACS) began to heavily promote the use of mammography as a breast cancer screening technology. Clara was part of the first wave of healthy, asymptomatic women to undergo routine mammographic screening, and she did so before the age and safety guidelines for mammographic screening were challenged and changed (though the debate rages on)4. Clara recalls that she began getting mammograms in the early 1970s:
I know that now they say that for a woman under 50 it [a screening mammogram] should be every two years, but then it was every year. My doctor said ‘this is something you need to do now, so go here and do this’. and so that's what I did.
In 1979 a routine mammogram revealed a suspicious lump in Clara's breast. Six weeks later she went into the hospital to have the lump biopsied. Clara entered the hospital expecting to emerge a few hours later with a clean bill of health. But things did not go as planned. As Clara recalled:
I had the biopsy and I was in the recovery room because I had general anesthesia, that's what they did then, and this giant person loomed over me in his green outfit and he said, ‘Well it's cancer! Do you want me to cut it off now or in a couple of days?’
Recalling this experience in vivid detail almost 20 years later, Clara said, ‘so I allowed as how [so I told him that] I would like to wait a couple of days’. Shaking her head and laughing in outrage and disbelief she continued:
But he was just gonna do it! Right then and there! And me explaining things to my kids, or making arrangements for them and my dog and cat – or whatever! It was totally unimportant [to him]. He just wanted to wheel me back in and cut my breast off! What an idiot! . . . He's actually still around. But I’ll bet he can't get away with that anymore.
Clara was more fortunate than many others. At the time of her diagnosis, neither professional norms nor legal regulations required surgeons to separate the diagnosis of breast cancer from its surgical treatment, nor to inform their patients of alternatives (Montini 1997). This so-called ‘one-step procedure’ required patients to sign in advance a form authorising the surgeon to perform an immediate mastectomy if cancer were found, or believed to be found. Later that same year, the NIH held a Consensus Development Conference on the treatment of primary breast cancer and issued a series of findings, including the non-binding recommendation that surgeons discuss treatment alternatives with their patients and abandon the one-step procedure (NIH 1979). In 1980 California became the second state to pass breast cancer informed consent legislation. This legislation did not criminalise the one-step procedure, but it did characterise as ‘unprofessional conduct’ the failure of a physician ‘to inform a patient being treated for any form of breast cancer of alternative, efficacious methods of treatment’ (CDC 2000). Thus, instead of awakening to the voice of her surgeon informing her that she had breast cancer and asking whether she wanted him to ‘cut it off’ now or later, Clara could easily have awoken to the voice of her surgeon telling her that, while she was unconscious, he had diagnosed and treated her for breast cancer by removing her breast, her chest muscles and her lymph nodes. As callous as Clara's surgeon surely proved himself to be, he was actually on the progressive end of the spectrum on this issue.
Diagnosed with breast cancer at the age of 37, Clara went home to make hasty arrangements for the care of her four children, then returned to the hospital for surgery and underwent a radical mastectomy. After spending three or four days recovering in the hospital, she returned home in time to take her final exams and finish her first semester of graduate school. As Clara recalled:
There was no process. No sensitivity to any feelings I might have about this. Or anything! It was very mechanical. . . . The medical establishment was horrible. Horrible. Horrible. Horrible. . . . It was just kind of like you were having your tonsils out. . . . I just don't remember any supportive medical personnel at all.
In addition to surgery, Clara had one appointment with a medical oncologist, who determined that adjuvant therapy was unnecessary. At her follow-up appointment with her surgeon, on the other hand, Clara was advised to undergo an additional, elective procedure:
This was a time when I was visiting him myself [without her lover/partner Regina]. And he said, ‘You know, you really need to have reconstructive surgery’. and I said, ‘Why?’ and he said, ‘I have seen many a marriage founder on the shoals of a mastectomy’. and I thought, ‘Okay. I'm gay. Now how do I explain this to a guy in a way that doesn't make it sound like my body's not important in this relationship . . . and I got so confused trying to figure out how I should respond to him . . . that I lost the opportunity. And I never did explain that to him.
Asked what it was that she had wanted to communicate to her surgeon almost 20 years earlier, Clara responded:
I wanted him to know that I was gay, and that he shouldn't talk to me about heterosexual marriage. But I couldn't figure out how to do it without making it sound . . . I couldn't figure out how to give him the right message. I don't think he could have heard it anyway . . . If I were to explain it to him today I would say, ‘This is my body and I see no reason to try to protect people from the fact that I have cancer. Had cancer. Whatever. That is their problem if they can't deal with it’. But at the time it did not occur to me [how] to explain that to him.
Reflecting later, Clara said:
I can imagine if I had been straight that that really would have affected me. But I just thought it was weird! and I didn't know how to verbally respond to make myself understood by this goon. So I think it would have affected me. It would have hurt my feelings. It would have worried me. It would have scared me. If I had not been a lesbian . . . I probably would have killed myself or started drinking.
My body was my body. And certainly I went through all the consciousness-raising groups in the seventies and . . . certainly, the women's movement and all that stuff that we were going through in the seventies gave me words and concepts to be able to understand how I felt about this stuff . . . And certainly if I hadn't been through all that stuff, I don't know that I would have been a lesbian. I'd probably still be married to Sally's [her daughter's] father. And I would have taken the stuff that that doctor said to me very seriously. And I would have been worried about it, because it certainly echoed the messages about femininity and womanhood that I'd learned growing up . . . And if I hadn't been freed from it by the women's movement, then I just would have . . . I wouldn't have questioned it . . . If you don't have the words to express how you feel, you’re really kind of stuck with the feeling. And that's what I got out of those early years and it definitely . . . definitely created my response to the whole cancer experience.
Instead of internalising the sexism and heterosexism of her surgeon, Clara's feminism and her lesbian identity provided her with the emotional, experiential and intellectual resources to reject these male, heterocentric assumptions about women's breasts, bodies, desires, pains, pleasures, preferences and priorities.
From the healthcare system's point of view, Clara's rehabilitation was simple and speedy. In the 1970s the only institutionalised form of rehabilitation and support available to women with breast cancer was Reach to Recovery, a programme adopted by the American Cancer Society in 1969 to provide support and practical advice to post-surgical mastectomy patients (Ross 1987: 161–71). Reach to Recovery was designed to appease the concerns of surgeons, many of whom initially viewed the programme with a mixture of scepticism and suspicion (1987: 167–8). Access to patients was controlled by physicians, and Reach to Recovery volunteers were prohibited from expressing their opinions or offering advice about physicians, treatments or medical concerns (1987: 167–8).
The programme was organised so that a Reach to Recovery volunteer, always a former breast cancer patient, would visit the new ‘mastectomee’ shortly after surgery, either in the hospital or, less desirably, in her home. The Reach to Recovery volunteer would teach her temporary charge how to perform therapeutic exercises, which were designed to aid in her physical recovery, and how to hide the evidence of her surgery with a breast prosthesis, which was designed to aid in her psychological recovery. Dr. Markel, a strong supporter of the programme in the 1970s, offered the following analysis:
I think the big bang in Reach to Recovery is when the patient in the bed looks up and a woman comes through the door. (And we insist [that she] wear a tight fitting gown so that both breasts show and her hair is all combed.) We think we've made it then at that point. She [the patient] looks up. You are a Reach to Recovery volunteer and you've had a mastectomy. If something clicks here, then all the rest of it is not terribly important, because then she wants to get well (quoted in Breslow 1979: 460).
Reach to Recovery reflected, responded to and reinforced the relationship between women's social status and gender identity on the one hand, and their physical attractiveness and ‘breasted experience’ (Young 1990) on the other. The goal of the programme was for the post-surgery patient to re-enter her former life and become again the person she was before she was diagnosed and treated for breast cancer. The goal of the programme was not to create social networks and a supportive community, but to facilitate a quick transition back to normality.
In Breast Cancer: A Personal History and Investigative Report (1975), Rose Kushner wrote about the difficulties she encountered in her efforts to gather information on women treated for breast cancer. Wanting to contact women who were not immediately ‘post-op’, Kushner turned to the American Cancer Society and its Reach to Recovery programme for help. The ACS was unable to assist, however, because the Reach to Recovery programme did not keep records or maintain contact with the women who had been visited by their volunteers. Kushner described a conversation she had had with a representative of the ACS concerning this issue. The representative explained to Kushner:
‘We didn't want Reach to Recovery to become a crutch . . . After all, the whole point of Reach to Recovery is to convince women they do not have a disabling handicap. We talked about having a mastectomy club, like the various ostomy clubs and laryngectomy clubs. But that would have defeated our whole purpose. Having a mastectomy is not a handicap, and even the worst of scars can be hidden by a well-fitting prosthesis and the right clothing. We decided we would help the patient for just a few weeks, and then leave her to her own psychological recovery’ (Kushner 1975: 211).
For many women, being visited by a Reach to Recovery volunteer was a welcome experience. It provided them with their only link to the mastectomy underground. For Clara, however, this experience was one of alienation instead of sisterhood:
I felt sorry for her. I mean, she meant well. She really meant well. But, you know, she wanted to tell me all about prostheses and how you could dress to minimize looking like you'd had a mastectomy and . . . it was not what I needed. I got rid of her as soon as I could.
Later, looking back on her first brush with breast cancer, Clara shared an interesting insight about the impact of breast cancer on her relationship to heteronormative standards of beauty. She explained that although being diagnosed with a life-threatening disease had been terrifying, and losing her breast had been traumatic, not everything about the experience was negative:
One of the interesting things about having cancer is that it's not all bad. In some ways it's very freeing. . . . One of the epiphanies the first time was that, like all young American girls, I mean, I grew up in the forties and fifties . . . I was oppressed by the idea that I had to be beautiful and I had to look like a Playboy centerfold, which I never did. I was never beautiful. I never looked like that. I never could have looked like that! It would have been impossible. And it tortured me. And having cancer really liberated me from that. It was like, ‘Okay, I only have one breast now so I can't possibly compete!’ And it was extremely freeing! I didn't have to try anymore! I didn't have to worry about it. I was out of the running . . . That part was really cool. I loved that.
Clara never opted for reconstructive surgery and she neither acquired nor wore a prosthesis. She continued wearing her same clothing, tight tank-tops and T-shirts. She continued taking her children to the public swimming pool wearing her old bikini. ‘I was very exhibitionist about it’, she said, ‘especially at the beginning . . . and people were shocked!’.
Clara ‘went on’ with her life, as she put it, without hiding the visible signs of her cancer history. But she was forced to come to terms with this history and to make sense of it without the benefit of other women who shared her experience. As Clara recalled:
In 1979 people just wanted you to have surgery and they didn't want to talk about it . . . You were in and out of the hospital and that was that! There was no social workers, no support groups . . . the closest thing to that was the Reach to Recovery lady and that was awful . . . and that was all there was. There wasn't anybody! I didn't know a single soul! and . . . um . . . that would have been nice, if I'd known other people. Yup. That would have been nice. Because . . . my partner certainly didn't understand it. I mean, nobody understands this experience unless they've gone through it. They just really don't . . . But I had no idea how to get ahold of people. And the Women's Cancer Resource Center [a feminist community cancer centre in Berkeley] didn't exist. It wasn't there. And there were no resources that I knew of.
Thus, except for follow-up appointments, Clara was officially ‘done’ with breast cancer when she recovered from surgery. Summarising the environment for women with breast cancer in the late 1970s, Clara said:
People didn't talk about it then. And I think that's probably the most global thing that I can say about having breast cancer in 1979. People. Didn't. Talk. About it. Period.
Although she was part of the first wave of women who were mammographically screened for breast cancer, Clara knew almost nothing about the disease either before or after her diagnosis. Scientific studies and medical information were not readily available and breast cancer patients, even middle class graduate students, had not yet become lay-experts. In theory, Clara could have gone to a medical library and conducted her own research, but this was not something that it occurred to her to do. This was not something that patients typically did. This was true despite the fact that Clara was active in the women's movement, despite the fact that she possessed a healthy distrust of the medical establishment, and despite the fact that her lover/partner, Regina, was a physician. Even if medical information had been accessible, the treatment options available to her were negligible, the room for manoeuvring almost non-existent.
Clara was unusual in that she forced open the space of participation and created an alternative path. She chose not to hide the evidence of her mastectomy. She refused, as she put it ‘to protect people from seeing this’. Her visibility to others, however, did not make others visible to her. Clara explained that she used to walk down the street after she had learned, much to her surprise, that one in 13 women (now one in seven) could expect to meet a similar fate. She remembers looking in vain for those invisible one-in-13 women and wondering who and where they were. She thought of her friends and all the women she knew. She wondered how many of them would get breast cancer – and she wondered, as she said, ‘how many of them already had’. In 1979 Clara's act of refusal was a symbolic gesture without a language, disembedded from the context and community necessary to recognise and respond to it. Although Clara struggled against the limits of this disease regime, those limits were finite and rigid. Feminism, women's liberation and a lesbian identity could take her only so far. They could change her relationship to the regime of breast cancer and they could buffer her against its sharper edges, but they could not, or rather, they had not yet, thoroughly transformed the practices of this regime.
Clara Larson in 1997: new social relations, solidarities and subjectivities
In 1997 Clara was diagnosed with metastatic breast cancer when she sought medical treatment for a back injury. In the end, rumours of a cure proved to be greatly exaggerated, as they did for so many women who were optimistially but prematurely pronounced ‘cured’. Prognostically speaking, Clara's second diagnosis was much worse than her first. By 1997 her original breast cancer had metastasised to her vertebrae, her hip and her lungs.
This time round, Clara turned to a variety of sources of information and was gratified by what she found:
The Internet was really helpful. And then you"ve got the 1-800-4CANCER [the NCI cancer information number]. And I know a lot more people who've had cancer. And . . . there's the cancer center, and the cancer center is just so full of people who are helpful and tell you things, and my doctor is incredibly helpful and supportive. I mean, everybody's just really nice.
Clara used the web to research the chemotherapeutic drugs she was given and she checked out the breast cancer chat rooms and bulletin boards. She received gifts of books from family and friends. Her son, for example, presented her with a copy of Cancer in Two Voices (1991), an illness narrative written by a lesbian couple, Sandra Butler and Barbara Rosenblum, chronicling their life together, and Rosenblum's illness and death from breast cancer. Another friend gave her a copy of Dr. Susan Love's Breast Book (1995). A well-known breast cancer surgeon, as well as a feminist, a lesbian and a breast cancer activist, Love's book was wildly popular among women diagnosed with breast cancer.
But it was not just that access to information had expanded, the whole environment of healthcare delivery had changed. Contrasting the breast cancer regime of 1997 with that of 1979, Clara said:
I just don't remember any supportive medical personnel at all [in 1979]. In contrast to what I'm going through now, where, you know, I'm in an HMO [Health Management Organisation], and healthcare is [supposed to be] so terrible and so seemingly unavailable . . . but the medical people have just been fabulous this time around. They’re just wonderful. And that just didn't happen before.
Not only were the hospital staff and healthcare professionals helpful and supportive, but the sexism and heterosexism that infused her first encounter with the regime of breast cancer had been replaced (at least in the Berkeley hospital where Clara was treated) by a lesbian and feminist-friendly staff whose own views of breast cancer had been influenced by the breast cancer movement. As Clara said:
A lot of these women are feminists, a lot of these women are lesbians. And people have a political consciousness about the whole cancer thing.
I mean, in Berkeley it is so okay to be gay – it's just totally okay. [It's] totally accepted. Now. Not before. And people have been fabulous with Susan [her new lover]. They treat her as my partner. They give her all the respect that they would give a heterosexual partner . . . One woman, she wasn't a nurse, she was a pharmacist or something, and she came into my room to ask me about something and she said, ‘well you’re a lesbian aren't you?’ and I thought, ‘Whoa! What an assumption! What a turn around!’ And gradually they all [the lesbian healthcare workers] came out to me. It was great. . . . It was fabulous. I loved it.
What a contrast to Clara's first experience of breast cancer! In 1979 Clara's lesbian identity was either invisible or ignored by her surgeon, who did not appear to think twice about his assumptions. Now the presumptuousness ran in the opposite direction – but in a way that delighted Clara and made her feel seen, recognised and accepted.
Not only had the social and cultural environment of cancer care changed, but so too had the organisation and delivery of services. Instead of feeling isolated and powerless, as she had in 1979, Clara felt like the captain of a well-functioning team dedicated to aiding and assisting her treatment and recovery. She gave a long list of the individuals who she viewed as members of her team:
Well certainly there's my oncologist. Then there's my regular general practitioner. There's my acupuncturist. There's my chiropractor. Also, my acupuncturist is an herbalist. And then there's other people that have been helpful in this process. . . . A couples counselor . . . and I would also put on the list my hair cutter [who shaved her head when she started losing her hair and continued shaving it during chemotherapy] . . . and I would also put my housecleaner on that list because I'm not supposed to get anywhere near dust [due to her compromised immune system]. And so the list just goes on and on and on and I feel like all those people have really contributed to solving the problem.
In addition to revealing the tremendous impact of alternative health movements on the Bay Area regime of breast cancer, this passage reveals one of the ways in which, increasingly, the experiences of illness available to women diagnosed with breast cancer were being shaped by class distinctions. In the earlier regime of breast cancer there was more of a ‘one size fits all’ approach to the diagnosis and treatment of disease, and treatment itself, especially for women diagnosed with early stage breast cancer, was fairly simple (albeit radical) and straightforward – amputation of the breast. With minimal options, alternatives and amenities available to women diagnosed with breast cancer, the social, cultural and economic capital (see Bourdieu 1986) possessed by individual patients was less consequential. There were simply fewer investment opportunities – fewer ways of converting these various forms of capital into better treatment outcomes and illness experiences. In contrast, between April 1997 (her second diagnosis) and January 1998 (when she was interviewed), Clara estimated that she spent $6,000 of her own money on alternative and complementary treatments and services not covered by her HMO. Beyond that, the treatment that she received, a stem cell transplant, was an expensive and experimental procedure to which few women with breast cancer had access. Ironically, despite the popular backlash against a healthcare system increasingly organised around the logic of market mechanisms (see Scott et al. 2000 for an institutional analysis of these transformations in the Bay Area), certain dimensions of the regime of breast cancer had improved for middle class patients. By 1997 middle class breast cancer patients with health insurance in the San Francisco Bay Area had become savvy consumers, forcing medical facilities to compete for this ever-expanding market. The number of ‘women's health’ and ‘breast health’ centres grew during the 1990s, along with special resources, support groups and other amenities. These improvements did not benefit all patients equally, however, and almost certainly exacerbated existing inequalities (see especially Shaffer 2000), but they did contribute in positive ways to the illness experience of medically-empowered patients.
The cancer centre where Clara received her treatment offered free patient education workshops and cancer support groups. These were organised according to various criteria: type of cancer, stage of cancer, age, sex, etc. There were drop-in groups, ongoing groups and coed groups for people with metastatic disease. If Clara had wanted to avoid medical settings (as many cancer patients do), there were free support groups and educational forums in alternative settings. Just down the street, the Women's Cancer Resource Center (WCRC) offered a series of support groups, including one for lesbians with cancer. They also offered a variety of practical services to women with cancer, including a medical library, research assistance, patients’ evaluations of local physicians, phone access to women willing to share their treatment experiences and one-on-one assistance with transportation, shopping, cleaning and other errands and activities. Further down the road, the Charlotte Maxwell Complementary Clinic provided free complementary and alternative cancer therapies (massage, acupuncture, Chinese herbs, meditation, etc.) and organic fruits and vegetables to low-income women with cancer.
Clara attended a series of workshops for cancer patients who, like her, were contemplating undergoing a stem cell transplant. These workshops provided Clara with an opportunity to establish relationships with other, similarly-positioned patients and put her in touch with additional resources, support and information. Certainly, Clara did not access all, or even a significant portion of the resources available to her, but their existence, and her awareness of their existence, nonetheless shaped her illness experience by changing what had been (in 1979) an individualised experience of isolation and alienation into a shared experience of support and solidarity.
Even Clara's son benefited from the new openness about breast cancer. Clara related a story about her son, who ran into an old friend of his from high school. According to Clara, her son's friend asked, innocently enough, ‘How's your mother?’– and her son responded that his mother had been diagnosed with cancer. His friend replied ‘Mine too! What kind of cancer does your mom have?’‘Breast cancer’, her son explained. His friend once again responded ‘Mine too!’ Clara smiled and said, ‘This never would have happened when I was growing up! We never would have had a conversation like that about our mothers in the 1950s’. Instead of hiding their mother's stigmatising illnesses and suffering alone and in silence, these two young men were able to bond over their shared experience, support one another and renew their friendship.
But even for a white, middle class, lesbian feminist living in Berkeley, California the new regime of breast cancer was not a disease utopia. Clara, for example, did not particularly like the Women's Cancer Resource Center. As she explained:
They reminded me of . . . in the seventies all the lesbians that I knew . . . were downwardly mobile . . . and there was a certain way that you were supposed to be . . . and I had way too many kids to be politically correct, and I also lived a very middle class lifestyle . . . and there were a lot of people that were very critical of me because I wasn't the right kind of lesbian. And that's the same feeling that I had when I walked into WCRC. And I'm sure that this is not everybody's experience, but it was my experience . . . and that probably had a lot to do with my resentment with all the people who basically just discounted me in the seventies because I wasn't a politically correct lesbian. I guess it [Clara's negative reaction] probably just hooked into that.
Although WCRC was a feminist and lesbian-friendly organisation, Clara did not respond positively to its organisational culture because it evoked painful memories of rejection, which in turn inspired feelings of anger and resentment. She felt rejected not by WCRC per se, but by the lesbian feminist community with which she associated it, a community that, 20 years ago, had rejected her, she believed, for being too mainstream, too middle class and too motherly.
This aspect of Clara's illness experience is a powerful reminder of two things. First, it reminds us of the importance of cultural differences, even within groups we assume are relatively homogenous. In this case, differences in class culture and political culture separated Clara from an organisation for which one might reasonably have expected her to feel a fair amount of enthusiasm. Furthermore, giving an ironic twist to sociological assumptions about class-based exclusions, Clara felt rejected not for being too poor, but for being too middleclass. Second, it reminds us that disease regimes shape, rather than determine, illness experience. The development of lesbian and feminist cancer organisations created new social spaces, solidarities and subjectivities, vastly expanding the kinds of illness experiences available within the second regime of breast cancer. But individual experiences, memories, personalities and perspectives also shape illness experience. Just as Clara's feminist politics and lesbian identity served as resources during her first encounter with the regime of breast cancer, painful memories of rejection by the lesbian community created barriers to fully accessing the resources for women with cancer later provided by the lesbian community.
Social movements in the Bay Area also changed the way in which the issue of breast cancer was publicly framed and understood. Environmental activism was a key focus of the breast cancer movement in the San Francisco Bay Area. By 1998 this particular orientation had crept into Clara Larson's own cognitive framework and political sensibilities. No longer did she view breast cancer solely through the lens of gender and sexuality. She now viewed breast cancer as an environmental disease and an issue of corporate profits and pollution. As Clara explained:
In those days [after her first diagnosis], I thought it [wearing breast prostheses] was to protect men from seeing that there were women walking around with one tit. And now I think it's because . . . the increase in cancer, I believe, is environmental. And people need to be protected from us so that they don't realize what an epidemic this is, especially here in the Bay Area, and start questioning some of the people who are polluting the environment, polluting the bay. Because that's big corporate money. And they don't want people to think about it. That's also why they focus on detection instead of prevention.
Clara indicated that she had arrived at this analysis ‘probably in the last five years, when I started hearing the statistics that breast cancer is so much more prevalent in the Bay Area than anywhere else in the country’. The wide circulation and politicisation of these statistics, framed as evidence of environmental influences, was the handiwork of the feminist cancer and environmental justice movements (see Klawiter 2003). Clara's understanding of breast cancer was thus shaped by environmental breast cancer activism even though she was not active in this, or any other, social movement.
In fact, Clara's lack of involvement was the source of some remorse. She explained that when breast cancer activism started developing in the Bay Area in the late 1980s and early 1990s, a lot of her friends assumed that she would love to get involved. But, as Clara said, ‘I just didn't want to’. ‘For me’, Clara explained, ‘my cancer experience was really . . . awful and it was something that I wanted to leave behind. I didn't feel like going up there and being part of all that. I would have rather volunteered at the SPCA [Society for the Prevention of Cruelty to Animals] or something’. Since her second diagnosis, Clara had been feeling a growing sense of moral obligation to get involved in the breast cancer movement: ‘I think I should get involved’, she said, ‘but I bet that I won't’. She continued:
I think that something has to be done about it and it's important to push for more money for research, and it's important to be part of the movement to expose the environmental hazards and all that kind of stuff. That's important work to be done . . . but I probably won't do it, because when this is over, I'm gonna want to shut it out of my life again.
Larson's desire to keep her distance was not in the least bit unusual or difficult to comprehend. After all, most people, given the choice, would prefer to put the experience of cancer behind them. The difference is that, in 1979, Clara looked for political community but was unable to find it. In 1998, she felt called upon to justify her lack of political involvement.
Despite her reticence, Clara discovered that she could witness the political face of breast cancer from within the privacy of her own living room. That summer, while reclining on her couch and recovering from a stem-cell transplant with high-dosage chemotherapy, Clara watched as lesbian, feminist and environmental cancer activists marched in San Francisco's annual lesbian-gay-bisexual-transgender pride parade. One-breasted, two-breasted and bare-breasted women marched at the front of the parade, carrying the official parade banner. That year, as the banner indicated, the parade was officially dedicated ‘To Our Sisters with Cancer’. Groups from the Women's Cancer Resource Center, Charlotte Maxwell Complementary Clinic, Lyon-Martin Women's Health Services, Breast Cancer Action and the Toxic Links Coalition trailed behind. A handful of women covered with colourful, plastic, mini-breast prostheses handed out flyers and threw Frisbees advertising free mammograms for low-income women. Behind them, a couple of dozen women and several men carried cardboard gravestones emblazoned with the names of women, both famous and obscure, who had died of breast cancer. Bringing up the rear was a trolley car full of women who, as their banner indicated, were ‘living with cancer’. This time around, instead of ‘taking it to the streets’ all alone and finding neither camaraderie nor political community, Clara watched comfortably from her couch as images of breast cancer activists taking over the streets of San Francisco were beamed back into her living room.
Although Clara Larson was, and is, a truly exceptional individual, what she encountered and endured when she was diagnosed with breast cancer in the late 1970s was neither exceptional nor extreme. In the first regime, her experience of breast cancer was relentlessly individualised. She looked for a sisterhood of survivors but never found one. She engaged in acts of civil disobedience but remained isolated. Surgeons were the undisputed sovereigns within the medical setting, and structurally speaking, the only role available to women with breast cancer was that of the duly compliant patient. Almost inevitably, the power inequalities structured into the physician-patient relationship were deepened by the gender-inequalities between male surgeons and female patients. Even an atypical patient like Clara, who had been involved in consciousness-raising, women's liberation and lesbian feminism (and whose partner was a physician) found the power dynamics and disparities overwhelming. The women's movement and lesbian feminism provided her with the intellectual, social and emotional resources to maintain a critical distance from some of the technologies of normalisation, but there were practical limits to her resistance, and those limits were established by the regime of breast cancer.
By 1997, however, a new regime of breast cancer had emerged in the San Francisco Bay Area. Not only had the clinical contours of disease changed, but the public face of breast cancer had undergone a remarkable transformation. Clara was treated in a feminist and lesbian-friendly cancer centre. She decided between medical alternatives, attended patient-education workshops, participated in her treatment as a member of a ‘healthcare team’ that consisted of a range of healthcare professionals – both regular and alternative – and an assortment of support personnel. Books by lesbian feminist surgeons and patients appeared in her hands. Support groups, medical information and practical resources for women with breast cancer were freely available. Women with breast cancer had become a visible presence in the public domain and breast cancer survivors were now heralded as heroes rather than pitied as victims. Breast cancer had been politicised along multiple dimensions and reframed, among other things, as a feminist issue and an environmental disease. And the gay pride parade, which was dedicated to women with cancer, marched right into her living room.
The contrast between the first and second regimes of breast cancer was dramatic. In the earlier regime of practices, Clara attempted to take breast cancer to the streets by making visible its inscription on her body. But she did so alone, and her impact was necessarily limited. Instead of sisterhood and solidarity, she crashed into the rigid structure of stigma, isolation and invisibility – the architecture of the closet. The second time she was diagnosed with breast cancer Clara maintained her distance from the social movements engaged in breast cancer activism. They changed her experience of illness nonetheless, because they radically transformed the regime of practices through which her experience of breast cancer was constituted.
So what does this study contribute to our understanding of the structural shaping of illness experience? How does it address gaps in our scholarship and weaknesses in our theorising? It does so in four respects. First, it offers the concept of disease regime. Conceptualising disease as a regime of practices allows us to analyse structures as practices, and enhances our ability to historicise and contextualise the structural shaping of illness experience. If there were ever a time when the social construction of disease and the social structuring of illness could be understood by limiting one's focus to the institutions of science and medicine, and the social relations of class, race, gender, etc., that time has surely passed. We need frameworks that recognise the multiplicity of practices and institutions shaping the social structuring of disease and illness experience; we need frameworks that recognise the multiplicity of arenas in which these practices are played out and contested. Second, this study demonstrates the value of incorporating social movements more fully into the study of illness experience. Social movements are not the only source of change, of course, but they are an increasingly important one – and one that, has been undertheorised thus far, in the scholarship on illness experience. At the same time, scholarship on health and illness-related social movements tends to focus on their success in legislative and policy-making arenas. This study shifts the focus to what, after all, constitutes one of the most important measures of success: their impact on the lived experience of so-called ‘free riders’ and non-participants. Third, this study proposes that social movements change illness experience in two ways: by changing the sufferer's relationship to the regime of practices, and by changing the actual practices of the disease regime. Even social movements that do not specifically target disease regimes can have an impact on the illness experiences of individuals, but the impact is necessarily limited if they do not change the experiences of illness that disease regimes make available. Finally, this study underscores the significance of gender and sexuality to the analysis of illness experience, demonstrating how gender and sexuality are constituted within disease regimes and challenged by social movements.
For their insight, comments and suggestions on earlier drafts of this article, I am grateful to Phil Brown, Stephen Zavestoski, Mike Allen and the editor and anonymous reviewers of Sociology of Health and Illness.
Corporate contributions to the ‘beautification’ of breast cancer are discussed in greater length elsewhere (Klawiter 1999b). See Samantha King (2001) for an exceptionally thoughtful analysis of the relationship between breast cancer-related corporate philanthropy, cause-related marketing and new forms of citizenship. See also Suein L. Hwang (1993), Lisa Belkin (1996), Debra Goldman (1997), Sandy M. Fernandez (1998, 1999), Mary Ann Swissler (2002), and Breast Cancer Action's ‘Think Before You Pink’ campaign (http://www.thinkbeforeyoupink.org).
There is significant overlap between social movements and what I am referring to as the ‘non-establishment approaches of medically marginalised communities’. See, for example, David Hess (2003) and Gerald E. Markle, James C. Petersen and Morton O. Wagenfeld (1978).
My analysis is informed by breast cancer narratives written by patients, survivors and activists (Kushner 1977a, 1977b, 1986, Lorde 1980, Winnow 1989, 1991, Brady 1991, Butler and Rosenbeum 1991, Stocker 1991, 1993, Mayer 1993, Batt 1994, Dunnavant 1995, Kahane 1995, Altman 1996, Orenstein 1997, Midddlebrook 1997); studies of breast cancer activism (Montini and Ruzek 1989, Montini and Slobin 1991, Dickerson 1996, Montini 1996, 1997, Taylor and Van Willigen 1996, Anglin 1997, Densham 1997, Kaufert 1998, Leopold 1999, Brenner 2000, Fishman 2000, Weisman 2000, King 2001, Casamayou 2001, McCormick et al. 2003, Brown et al. 2004, Zavestoski et al. in press) and the women's health movement (Ruzek 1978, Norsigian 1996, Weisman 1998); studies of breast cancer illness narratives and illness experiences (Hawkins 1993, Mathews, Lanin, and Mitchell 1994, Leopold 1999, Rosenbaum and Roos 2000, Potts 2000, Kasper 2000); studies of breast cancer in popular culture (Clarke 1992, Lupton 1994, Yadlon 1997, Yalom 1997, Lantz and Booth 1998, Leopold 1999, Lerner 2001, Marino 1999, Fosket 2000, Saywell 2000, Brown et al. 2001); and historical research on early detection campaigns and the medical management of breast cancer (Breslow 1979, Ross 1987, Patterson 1987, Fisher 1985, 1999, Balshem 1993, Cartwright 1995, Gardner 1999, Leopold 1999, Lerner 2000, 2001, Aronowitz 2001).
The NCI and the ACS began promoting mammographic screening for breast cancer in the early 1970s, through the Breast Cancer Early Detection Demonstration Project. The BCDDP provoked a number of controversies about the safety, wisdom and effectiveness of mammographic screening that, after 20 more years of clinical trials and meta-analyses, have only become more complicated (see Bailer 1976, Rennie 1977, Breslow 1979, Baker 1982, Ross 1987, Skrabanek 1989, Kaufert 1996, Linden 1998, Olsen and Gotzsche 2001, Sherman 2002, Joyce 2003, Stein 2004).