Expertise and Democracy
"If citizens ought to be empowered to participate in determining their society's basic structure," writes Richard Sclove, "and technologies are an important species of social structure, it follows that technological design and practice should be democratized." There is a growing, international body of literature suggesting means by which science and technology can be brought further under popular control—studies of "science shops" that bring researchers into collaboration with citizens, "science courts" that invite laypeople to pass judgment on political controversies with scientific dimensions, and citizen boards to assess technological risks. Yet there is also good cause to recognize the extraordinary difficulty of eradicating hierarchies founded on knowledge-possession—hierarchies that can cut across social movements just as easily as they can divide "laypeople" from "experts." This, too, is a dilemma that will confront future groups that seek to democratize biomedical knowledge-making or other domains of science and technology.
In the goals of democratizing science and building "lay expertise," at least three distinct difficulties are interwoven. First, the practices of science by their nature presuppose specialization: no one can know everything; everyone must therefore acknowledge that others speak with authority—at least some others, some of the time. To participate in science, then, means inevitably to cede authority over most of its domains at the same time that one constitutes expertise over a particular one. Even AIDS treatment activists tend to specialize among themselves and construct a division of expert labor: some study vaccine development, others follow immunology, still others "adopt" a particular
drug and track its development. In this way, activists become essential to one another, since all must trust that the others have done their homework and know what they're talking about. Understood in these terms, "democratization" of science is inevitably a partial and uneven process and one that, ironically, proceeds hand in hand with the consolidation of new relationships of trust and authority.
The second difficulty confronted by social movements that seek to democratize the practices of knowledge-making is that there may be tension between participation in the construction of scientific knowledge and the requirements of movement-building. While inarguably successful in important ways and according to various criteria, the shift "inward" and "backward" by key treatment activist groups has made it harder for them to frame issues for the media or a broader public, to recruit new members, and to maintain a broad-based and socially diverse movement. The ways of representing natural and social reality that activists develop in their role as "lay experts" may differ significantly from the representations that they elaborate in street demonstrations and other, more conventional, activist venues. And the tactics of "expertification" that have ensured the activists' credibility before the research establishment may be, at least to some degree, in conflict with the goal of ensuring movement leaders' credibility in the eyes of the communities that the movement seeks to represent.
Issues of professionalization and hierarchy—and risks of cooptation—are not, of course, unique to AIDS activism. Other movements, such as the environmental movement, have struggled over "insider" and "outsider" strategies and the relative merits of professionalized activism when interacting with credentialed experts. Few are the cases, however, of movements so fundamentally dependent on their adversaries as is the AIDS movement, and it is this binding of need and antagonism that has accentuated the complexities of the interaction and brought them into sharper relief. The experience of AIDS treatment activism suggests that confronting highly technical domains of science can have a wide range of effects upon the internal and external dynamics of a social movement. Even when activists deliberately erode the boundaries between "science" and "politics," they may find that the tactics and tools that facilitate their engagement with scientific elites are at variance with other movement goals and may distance them from some of their "lay" compatriots who perceive them then as "experts." Such developments can lead to profound
internal struggles to determine a movement's very identity, as well as how it communicates its messages and what it sets out to accomplish.
The third problem is that knowledge hierarchies are rarely "accidental" in their origins: They tend both to build upon and reinforce social cleavages based on other markers of difference—class, formal education, race, gender, sexuality, and nationality. When the power of expert knowledge within a social movement overlaps with other systems of hierarchy, the results can be problematic for the movement, even if the new experts work entirely in good faith for the benefit of all. The interweaving of expertise with diverse forms of power is evident to those who become positioned on the margins. It is apparent, in another way, to "border people"—as Garance Franke-Ruta (a white woman) refers to the position of herself and Moisés Agosto (a Puerto Rican gay man) inside TAG, an organization that is predominantly composed of white gay men. As an "outsider" who believed in the importance of treatment activism for communities of color, Agosto found he had to fight his way into a position of access and influence—to break into the tight circles that the first generation of treatment activists had constructed between themselves, government health officials, academic researchers, and pharmaceutical companies. Wearing two hats, Agosto took a staff position with the National Minority AIDS Council but remained active with TAG, becoming a member of its board. However, once he found himself appointed to the National Task Force on AIDS Drug Development, Agosto confronted an ironic challenge from the grassroots: "People have come to me and said, 'Well, we lost you. You're on the inside now with the Task Force.'"
Agosto rightly observes that his options have not been foreclosed: "I can [still] go and scream in the streets if I feel I have to." But he cannot entirely escape the metamorphosis of identity that follows from engagements with power and knowledge. The fact that various dimensions of social hierarchy, such as those constructed in relation to racial difference, crisscross and intertwine with the politics of expertise only complicates the story and imbues it with added poignancy. These considerations suggest the true dimensions of the problem: it is unlikely that knowledge-making practices can be substantially democratized, except when efforts to do so are carried out in conjunction with other social struggles that challenge other, entrenched systems of domination.
This broadening of perspectives would set heady goals for a movement more immediately concerned with the concrete business of saving
lives. But even the most "professionalized," "expert" activists pursuing "insider" strategies have seen precisely these deeper purposes as the motivation for their efforts. "If AIDS activists ever leave any legacy other than their own bodies," wrote Gregg Gonsalves and Mark Harrington in 1992, "it will be, among other things, a movement for national health care and the democratization of research." Certainly the genuine progress that has been made in the struggle to democratize biomedicine is not negated by the failure to realize it in full, any more than the medical advances in the fight to keep people with AIDS alive are belied by the failure to eradicate the epidemic. In the meantime, the struggle continues on multiple fronts, and AIDS activists' strategies for engaging with medical science continue to provoke controversy and provide inspiration.