Science Studies and Social Movement Research
The relation between activism and science has been considered from a variety of directions by scholars working within the sociology of social movements, the sociology of science, and other fields. Analysts have investigated such topics as the reliance of some activist movements on outside, credentialed expertise,[77] the antipathy of groups such as the animal rights movement toward the scientific enterprise,[78] the formation of activist groups or advocacy movements by scientists or professionals themselves,[79] and even the tendency of delegitimated clusters of scientists to work in ways that resemble social movements.[80]
Few studies, however, have explored the role of movements in the construction of credible knowledge, and few sociologists of scientific knowledge have engaged significantly with the sociological literature on social movements.[81] To understand the complex dynamics of the field of AIDS research and in particular to conceptualize the interventions of organized groups of laypeople in scientific practice, it makes sense to borrow generously from this literature. On one hand, attention to the means by which social movements engage in claims-making—how they mobilize,[82] how they construct collective identities,[83] how they "frame" social issues and represent reality[84] —can shed light on their capacity to engage with medical and scientific
expertise. On the other hand, it is worth asking how the encounter with science affects the social movement in turn: in what ways does this engagement transform the movement's collective identity, mobilization potential, framing practices, and representational strategies?
James Petersen and Gerald Markle apply the "resource mobilization" perspective (a dominant approach within the study of social movements) to the cancer treatment movement, analyzing how activists "try to form coalitions, seek sponsorship, and appeal to a wider audience … as a means of increasing their movement resources."[85] And Debbie Indyk and David Rier likewise emphasize resource mobilization in their useful analysis of the particular case of alternative knowledge-production in the AIDS epidemic.[86] But analysts of science have paid little attention to the extensive theoretical and empirical literature on "new social movements"—works describing the ecology movement, the women's movement, the antinuclear movement, racial and ethnic movements, the gay and lesbian movement, and so on—a literature with obvious relevance to the study of the AIDS movement.[87]
Theorists of new social movements differ greatly in their approaches to the topic, though most tend to agree that the actors within the new movements are drawn primarily from the "new middle class" or "new class" of culture producers, particularly that strand of it that Alvin Gouldner calls the humanistic intelligentsia.[88] But unlike in working class politics, the class character of these movements is not emphasized by the activists. They are involved not (or at least not only) in a distributive struggle, where a quantity of resources is being parceled out to competing groups, but in a struggle over cultural forms—what Jürgen Habermas calls the "grammar of forms of life,"[89] Their emphases tend to be on "personal and intimate aspects of human life," their organizations tend to be "segmented, diffuse, and decentralized," and their theatrical protest tactics emphasize civil disobedience and a politics of representation.[90]
An epidemic whose social definition lies at the intersection of cultural discourses about sexuality, the body, and identity is, arguably, the ideal staging ground for the emergence of a new social movement. Perhaps most significantly, the politics of AIDS are interwoven at the deepest level with the explosive politics of sexuality in contemporary Western societies. "It would be difficult to imagine a more powerful or urgent demonstration than the AIDS crisis of the need to conceptualize sexuality, after the manner of Foucault, as 'an especially concentrated point of transversal … for relations of power,'" writes David Halperin.[91]
AIDS activists have sought to challenge the ideological linkages between sex and death and put forward "sex-positive" programs of AIDS prevention that assert the right to sexual pleasure and sexual freedom.
The body, another key site for the elaboration of AIDS activism, is "the tangible form of selfhood," the "symbolic frame through which [the] paradoxes of existence are most powerfully mediated."[92] But as Alberto Melucci notes, in the contemporary period the body has also "become a field of action on which social and cultural contradictions are delineated."[93] This is perhaps most obviously true when the body is confronted by the physical threat of annihilation through disease: it can itself become the most potent signifier of crisis and resistance.[94] "We in the communities most touched by AIDS have learned that the ultimate site of this struggle is the body," commented ACT UP/New York activist Jim Eigo in a presentation at a scientific conference: "So here I am, my own and my only audiovisual aid. There will be no `next slide.'"[95]
Central to the self-understanding of new social movements is the focus on the values of autonomy and identity. Yet the salient feature of the new social movements is not so much that they assert identities as the fact that the actors within them are conscious of their own active involvement in a public and contested process of identity construction.[96] While the constitution of identity may sometimes become an end in itself, William Gamson argues that it also serves an instrumental function in the mobilization process, influencing not only people's willingness to "invest emotionally" in the fate of the movement and "take personal risks on its behalf" but also their choices of strategies and organizational forms.[97]
These are exactly the characteristics one finds in ACT UP, which was, in the late 1980s and early 1990s, the premier social movement organization within the broader AIDS movement. ACT UP "operates largely by staging events and by carefully constructing and publicizing symbols"; its theatrics "are part of a continuing process of actively forging a gay identity while challenging the process through which it is formed for gay people at a time when the stigma of disease has been linked with the stigma of deviant sexuality."[98] This emphasis on identity politics has, in certain crucial respects, facilitated AIDS activists in their capacity to engage with scientific knowledge-production. Because identity politics are preoccupied with nonmaterial issues— with questions of representation and meaning—these activists are
inclined to wage struggles over the definition of reality. And because identity politics stand in opposition to what Foucault calls "normalization," these defenders of identity are highly sensitive to the imposition of norms, categories, and labels by outside authorities.[99] Drawn often from the ranks of those with significant cultural capital, AIDS activists have both a greater inclination and capacity to participate in the construction of social meanings and challenge the purveyors of "symbolic violence."[100]