Cultural Studies - Vol 12.2
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Cultural Studies - Vol 12.2

Volume 12, Issue 2

Lawrence Grossberg, Lawrence Grossberg, Della Pollock

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eBook - ePub

Cultural Studies - Vol 12.2

Volume 12, Issue 2

Lawrence Grossberg, Lawrence Grossberg, Della Pollock

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About This Book

A collection of essays on the topical and familiar: the future of reggae and the legend of Bob Marley; community and the public body in breast cancer media activism, and the redefinition of the Louvre are among the subjects discussed.

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Information

Publisher
Routledge
Year
2017
ISBN
9781134669233

Contents

  1. Articles
    1. COMMUNITY AND THE PUBLIC BODY IN BREAST CANCER MEDIA ACTIVISM
    2. BABYLON'S 'NATURAL MYSTIC': THE NORTH AMERICAN MUSIC INDUSTRY, THE LEGEND OF BOB MARLEY, AND THE INCORPORATION OF TRANSNATIONALISM
    3. SHOPPING IN THE MUSEUM? CONSUMER SPACES AND THE REDEFINITION OF THE LOUVRE
    4. THE TRANSNATIONAL MAKING OF REPRESENTATIONS OF GENDER, ETHNICITY AND CULTURE: INDIGENOUS PEOPLES' ORGANIZATIONS AT THE SMITHSONIAN INSTITUTION'S FESTIVAL
    5. THE GOLEM OF CONSCIOUSNESS4: MYTHOGENY'S LIFT-OFF
    6. THE ARCHIVE STATE AND THE FEAR OF POLLUTION: FROM THE OPIUM WARS TO FU-MANCHU
  2. Commentary
    1. MAKING IT TRADABLE: VIDEOTAPES, CULTURAL TECHNOLOGIES: AND DIASPORAS
  3. Book reviews
    1. DRAMATIC DISCOURSES
    2. ALAN TOURAINE
  4. Notes on contributors

Community and the Public Body in Breast Cancer Media Activism

Lisa Cartwright

Abstract

In this article, I consider how communities form around health care advocacy and activism. My concern is the place of visual media in the politics of breast cancer. Art photography and film are considered against mainstream images and media campaigns focusing on breast cancer. The primary work considered is the self-portrait photography of the artist Matuschka and the film The Body Beautiful by Ngozi Onwurah. I argue that these alternative texts help us to think about the ways in which issues such as race, age and beauty are key aspects in the experience of breast cancer, and not tangential cultural issues or 'appearance-related side effects', as one breast cancer support programme puts it.
Keywords breast cancer; community; body; media; mastectomy; photography
IT WOULD BE impossible to understand health cultures in the US without acknowledging the crucial role of media in their formation. Television, print media, cinema, online discussion groups and medical educational computer programs are important, if underconsidered means through which health issues are taught, communicated and lived. This article considers a few examples of breast cancer media produced by women who identify as activists, alternative media producers and members of the community of women affected by breast cancer. First, though, I want to address some of the problems that have made it difficult to think through questions of identity and community around health culture without also considering the role of media (film, print media, photography, video and digital technologies) in the incorporation of illness and survival as aspects of identity and community. In the discussion that follows, I try to demonstrate the importance of focusing on 'local' or 'minor' media productions — work by independent or alternative media producers, personal video and art photography — rather than mainstream media. As I will try to demonstrate below, the concepts of community and media function in highly specific ways within health cultures, demanding analytic strategies that take into account the specificity of media users and audiences.

Health and community

Arenas of political action devoted to health care, illness and disability historically have formed on the basis of collective responses to experiences with illness and the health care system. Advocacy and activist groups, self-help and support groups, and more loosely based networks of individuals organized on the basis of shared experiences which might include having a particular illness and/or treatment, protesting lack of access to medical treatment, advocating for research, managing pain, needing emotional support, negotiating loss of bodily functions, identifying as a survivor, confronting iatrogenic illness, facing ongoing disability, or doing support work or caregiving. Whereas broad social networks have formed around breast cancer generally (for example, the National Breast Cancer Coalition (NBCC)), groups have also organized themselves on the basis of these more delimited issues as well as on the basis of identity or region (the Chicago Lesbian Community Cancer Project, or the Atlanta-based National Black Women's Health Project). What are the implications of using the terms identity and community to refer to groups that coalesce around illness and/or disability? There are important discontinuities between health status as a category of identity or community and the more familiar identity categories of ethnicity, race, nationality, gender, class and sexuality. Akhil Gupta and James Ferguson present a version of current thinking on community formation that helps me to access this issue. They state:
something like a transnational public sphere has rendered any strictly bounded sense of community or locality obsolete. At the same time, it has enabled the creation of forms of solidarity and identity that do not rest on an appropriation of space where contiguity and face-to-face contact are paramount.
(Ferguson and Gupta, 1992: 9)
In the fragmented world of postmodernity, Gupta and Ferguson argue, space has been reorganized in a way that forces us fundamentally to rethink the politics of community, solidarity and cultural difference. They make this point with regard to an issue wherein space — its occupation and its ownership — is essential in a particular way: they are concerned with the establishment of groups such as displaced and stateless peoples, ethnic groups, exiles, refugees and migrants. But what are the implications of this idea of the obsolescence of bounded community and locality when we consider collective identity as it forms, provisionally, on the basis of illness, disability and the fight for access to treatment? Do reterritorialized space and transcultural formations become metaphors, or is there a parallel reconfiguration and dispersal of collective identity in the postmodern experience of breast cancer? For example, would it be accurate to describe survivors of breast cancer as a transcultural or transnational community because breast cancer strikes women of all classes, ethnicities and nationalities?
'Community' formation on the basis of health and illness is always highly provisional and unstable, in part because group formation takes place on the basis of a condition or experience that is always strongly determined by more conventional identity categories. Illness is not necessarily attached to, but must always be lived through, other categories of identity and community — categories that come into play at every level of the construction of publics and cultures around disease. In short, illness may take on the trappings of an identity category; it may be the basis for the formation of a (highly conditional) community, and it may be the grounds for the formation of a public sphere. But the experiences and cultures of illnesses none the less are always lived through identity positions and arenas of public and professional discourse that exceed the frameworks and cultures of disease. This is further complicated by the fact that 'illness communities' are comprised of people whose respective identities as ill or disabled shift throughout the course of a disease. Within breast cancer communities, one might occupy the position of caregiver, patient and survivor at different points in time, or even simultaneously.
While distinctions among these positions are fairly well acknowledged within groups formed around health issues, differentials of class, cultural identity, ethnicity and sexuality are quite often bracketed in order to underscore the unifying factor of disease. The online breast cancer listserv, for example, is comprised of women with breast cancer, survivors and their caregivers (doctors, health professionals, hospice workers, friends and family). The individuals who participate in this forum forge conditional bonds on the basis of their day-to-day experiences. But this kind of transcultural alliance sometimes problematically fulfils the conditions of Habermas's concept of a liberal public sphere, rather than becoming an increasingly more interactive, less rigidly class-, race- and nation-based model of a public. In broad-based groups like the breast cancer listserv or the NBCC, participants from disparate backgrounds bracket cultural differences on the basis of a common experience with breast cancer. This approach is to be lauded for its emphasis on the pervasive scope of the disease, but it provides limited means for addressing the class and cultural specificity of the experience, diagnosis and treatment of breast cancer among women of different ages, economic groups, regions and designated races. Following the model of white middle-class women's organizations in the 1970s and earlier, broad-based support groups tacitly uphold the liberal fantasy of a quasi-universal discourse among women.
What I am arguing against here is the idea that disease is the great leveller, or that coalition politics can or should smooth over differences as they impact on experiences of disease and disability. Much of mainstream breast cancer media so far has elided these differences. For this reason, I have chosen to focus on media texts that emphasize the specificity of different women's experiences with breast cancer. The work I have singled out for attention falls into the categories of alternative or activist media. Rather than looking at material like public service advertisements, Primetime feature stories and Lifetime television specials, I will be considering activist and art photography and video. Before turning to this work, however, I want to look more closely at some presuppositions that often accompany the analysis of non-mainstream media.

Health care and alternative media

The analysis of activist media often relies on a binary model that sets off local, oppositional, community-based groups against the globalizing force of mainstream medicine and media institutions. Much recent health care activism, however, crosses the boundaries between these two spheres. Groups like ACT UP (AIDS Coalition to Unleash Power) and the NBCC include among their members media and medical professionals with entrenchcd institutional practices as well as patients and lay advocates. In many areas of political organizing, alliances, however uneasy, have been forged across genders, classes, professions and cultures. What is new here is not what counts as community or coalition, but the fact that the crisis of illness, and not an aspect of shared identity in the conventional sense, is the basis for alliance. In the past decade we have seen an unprecedented degree of influence over medical policy brought to bear by medical countercultures composed of patients, activists and nonprofessional caregivers. The very idea of a counterculture as an extra-institutional force becomes complicated when we consider this traffic between the medical professions and activist groups and the role of laypersons in policy making.
Some of the more significant media activity shaping US health culture is taking place through advocacy, activist and community health groups using visual media as a prime form of public intervention. It is essential to consider how agents within these arenas gain a public voice; how they acquire access to decision making at the level of the institution or the state; and what the relationship is between media productions that originate from a position of activism or community politics (AIDS videos, breast cancer awareness pamphlets) and those that originate within 'minor' public spheres whose position at the margins of public culture does not necessarily stem from oppression, or from a stance of opposition. Progressive work in medicine is not necessarily coming only from practices identified as countercultural or as oppositional, as I will try to demonstrate below in the case of the work of photographer Matuschka. When we look at the interaction among various media forms (political cinema, mainstream photojournalism) and various public constituencies, it becomes difficult to theorize 'media activism' as a unitary sphere situated outside institutional medicine, or outside a mass public culture.
Viewed in this light, the binaries of a public and a counterpublic, mainstream and activist politics become less than productive analytic models. These formulations parallel the media studies binaries of broadcasting and narrowcasting, mainstream media and alternative media. The terms counterpublic or countercultures suggest oppositionality, when in fact many alternative publics are forged around the increasingly fr...

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