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Narrative Analysis and Social Movements: Conceptualizing and Mobilizing the ‘Fight’ Against
AIDS
Susan M. Chambré
Professor of Sociology
Baruch College, City University of New York
Susan.Chambré@baruch.cuny.edu
Social movement scholars have had a longstanding interest in the dynamics of
mobilizing citizens and sustaining their interest in collective action (Snow, Soule and Kriesi,
2004). Various theoretical perspectives have focused on different dimensions of mobilization: the
role of grievances in bringing citizens together; the importance of access to organizational
resources in mobilizing collective action and creating social movement and other types of
political organizations; the ways that social networks and social capital facilitate recruitment and
growth; and, more recently, the impact of emotions and the role of narrative in social movement
dynamics (Goodwin, Jasper and Polletta, 2001).
Recent work on the cultural and emotional dimensions of social movements points to the
importance of stories in promoting solidarity, especially during the formative period in a
movement’s history (Polletta, 1998). In “Public Narration and Group Culture: Discerning
Discourse in Social Movements,” Gary Alan Fine (1995:128) observes that a social movement is
a “bundle of narratives which when expressed within an interactional arena by participants
strengthens the commitment of members to shared organizational goals and status-based
identities…. Sometimes in the face of external opposition.”
Francesca Polletta (2006: 35) makes a similar point in her book, It Was Like a Fever
noting that “…narratives told by numerous actors more to make sense of surprising
developments than to recruit participants may nevertheless endow events with the moral purpose,
emotional telos, and engaging ambiguity that persuade others to participate.” Narratives and
personal testimonies are particularly important in the development of a social movement’s
cognitive framing of the issues it addresses and provides an important set of understandings about
motivations and the benefits of participation (Benford and Snow, 2000).
Narratives are important in a number of ways. For individuals, telling stories helps them
make sense of their situation especially when circumstances and strategies are baffling and
unclear. Individual narratives play a critical role in creating frames and ideologies which create a
sense of collective identity which has both a personal and political significance. On the
organizational level, narratives play a central role in bringing people together but also have a
major impact on a social movement’s success by enlisting institutional and elite allies that
broaden public support (Polletta, 2006). The tradition of public testimonies and personal stories
as a way to influence public opinion and enlist elite allies dates back at least to the early
nineteenth century when former slaves “told their stories” in published slave narratives and in
public speeches (Young, 2006). Similarly, early nineteenth century health reformers, most of
whom overcame debilitating illnesses through the use of alternative cures and often controversial
remedies, spoke and wrote about their experiences often telling remarkable stories of their
resurrection and path to healing and recovery (Whorton, 2002)
In the course of studying the development of the AIDS community in New York, I was
struck by the storytelling of early People Living with AIDS (PWAs) and the creation of an AIDS
culture (Chambré, 1995). The telling of personal stories and illness narratives was an important
strategy used by people living with AIDS as a way to cope with the uncertainty and the trauma of
being young people with an incurable and initially baffling illness. They played an important role
in mobilizing people to ‘fight AIDS,’ a metaphor which itself is fraught with meaning.
This paper has two objectives. It describes several central narratives in the early history
of New York’s AIDS community. This community developed in the last two decades of the
twentieth century, people infected with and affected by AIDS. Its members formed myriad formal
and informal organizations and groups in response to the epidemic. They raised money, formed
organizations, volunteered, lobbied and demonstrated to care for the sick, ease the pain of the
dying and pressured the state to increase resources. These activities – which were ways to ‘fight’
the disease both individually and collectively – were based on widely shared cultural schema of
what it meant to live, fight and die of AIDS. The early narratives were highly personal: the stories
people told and the stories they wrote in community publications were examples of ‘life politics’
(Young, 2002) where personal stories, which encode ‘embodied knowledge,’ serve as examplars
that promote collective action.
A second objective is to explain and to explore the utility of studying narratives as a way
to both understand the social response to AIDS and a way to think about the early years of the
AIDS community.
During the formative years of the AIDS community, between 1981 and 1987, the stories
that people told led to the creation of a powerful rhetoric that influenced a variety of social
institutions. Two central themes in these stories and narratives had a particularly important
impact: the idea that people could ‘fight’ the disease individually and collectively by becoming
empowered, and that more money, especially government money, would save lives and end the
epidemic. The emphasis on individual and communal self determination and empowerment
promoted a sense of shared identity and also served as a blueprint for collective action. They also
illustrate another important social fact: that self help groups, rather than depoliticizing people by
having them focus on their personal troubles, can serve as an important context for communal
mobilization. Support groups in the AIDS community were an important site where personal
growth was combined with individual empowerment that, in turn, led to advocacy and social
movement activities. Thus, the personal concerns that brought people into the support groups and
other organizations in the AIDS community led to political action which support’s Paul
Lichterman’s (1996) observation that the search for individual fulfillment does not preclude
communal and political action.
The paper is based on seventeen years of ethnographic and archival research detailed in
Fighting for Our Lives: New York’s AIDS Community and the Politics of Disease (Chambré,
2006). The data collection began in 1988 as a study of the mobilization of volunteers in response
to AIDS (Chambré, 1991a, 1991b). The project then focused on the development of the
organizational field in the AIDS community with a particular focus on 15 major organizations
(Chambré, 1997) and the development of an AIDS culture (Chambré, 1995). Subsequent data
collection involved detailed study of two policy domains: various aspects of prevention policy,
including safe sex, HIV testing, access to sterile injection equipment, and mainstreaming HIV
prevention into medical encounters; and finding a cure which includes the development of
innovative and more rapid methods of testing and approving new medications.
Between 1988, when the study began and 2005, when data collection ended, I conducted
255 in person and telephone interviews; observed 210 presentations at community and
professional meetings; and watched 25 videos and oral history interviews. A broad array of
published, unpublished and archival material were consulted including articles from the gay
press, recollections, letters and memoirs of people living with HIV/AIDS, articles from the
Persons with AIDS Coalition Newsline, the first monthly magazine written by and for people
living with AIDS, and from Body Positive magazine.
In contrast to many scholars who focus on the AIDS Coalition to Unleash Power or ACTUP (Epstein, 1996; Gould, 2002; Gamson, 1989), I looked at a broader range of organizations in
this social movement community including informal groups and ‘early riser’ organizations
(Tarrow, 1998) that were formed in the early nineteen eighties. These groups, especially the
People with AIDS Coalition, played a formative role laying the foundation for the activism that
became prominent in the later part of the eighties, most importantly in the work of ACT-UP.
Looking at a broader range of organizations, not just the most well known activist groups,
enabled me to profile the work of the AIDS community as a whole, a perspective that captures the
fact that a broad range of organizations -- civic, community, self help and social movement
organizations -- together play a critical role in episodes of contention (McAdam, Sampson, et.al.,
2005).
The personal stories, narratives and rhetoric that mobilized the AIDS community are an
important part in the evolution of collective action and the creation of social movement culture.
This paper builds on Polletta’s observations about the centrality of narratives in the early years of
a social movement and suggests that the stories of PWAs and the rhetorical understandings in the
AIDS community played a central role in mobilizing people to ‘fight’ AIDS. In contrast to
previous researchers who emphasize the distinct features of the AIDS movement (cf. Arno,
Epstein), I find that there are important historical parallels not only for social movements
generally but for health-related social movements. A majority of members of the Tuberculosis
movement in the early twentieth century were themselves survivors of the disease. They told their
stories of treatment and survival, just like PWAs, and constructed a public health effort to reduce
TB transmission that had a major impact on the incidence of the disease (Teller, 1988). Similarly,
polio survivors in the mid-twentieth century – particularly President Roosevelt – played a central
role in raising money to treat and the find a cure; later, they had an important influence on
disability policy. Cancer advocates also, relatively few of them survivors in the early years,
successfully used the personal testimonies of ‘victims’ and survivors to promote increased federal
funding for cancer research, a pattern that predates AIDS activism (Patterson, 1987). Perhaps the
most striking example of disease advocacy was the work of the National Kidney foundation
whose efforts led to the categorical coverage of end-stage renal disease patients under Medicare.
This was the first disease given this designation. Organizational representatives successfully
collaborated with journalists to tell their stories to the public. One patient had himself dialyzed in
front of a Congressional Committee, “a demonstration which apparently contributed to the
willingness of Representative Wilbur Mills to support a kidney disease amendment to Medicare.”
(Rettig, 1976). Like AIDS advocates, people with kidney disease successfully utilized a
rhetorical idea that resonated with a central premise in U.S. health policy: that spending money
will save lives.
This discussion also illustrates how the personal becomes political. Individuals often
come together with common concerns and grievances and develop a sense of communitas which,
in turn, empowers and certainly emboldens them to challenge social practices and social
institutions. The central part of this process are the personal stories that get shared and are passed
along which in turn become part of a collective understanding. In sum, the narratives in the
AIDS community served myriad functions: they helped people to cope, provided them with
information, and led to the collective action which, while often thought to be distinctive, has
strong parallels to past health-related social movement work.