AIDS activism and the rejuvenation of the public sphere.

• Author: Fabj, Valeria

On April 23, 1984, Health and Human Services Secretary Margaret Heckler held a press conference announcing the discovery of the virus believed to cause AIDS.(1) Her announcement expressed both pride in the research effort that led to the discovery, and optimism that further research would quickly bring a blood test for the virus, to be followed by a vaccine within two years. "Today," she said, "we add another miracle to the long honor roll of American medicine and science. day's discovery represents the triumph of science over a dreaded disease. Those who have disparaged this scientific search . . . have not understood how sound, solid, significant medical research proceeds" (Shilts, And the Band 450). Unfortunately, Heckler's optimism proved unfounded. While researchers did discover a blood test for HIV, the virus believed to cause AIDS, few are optimistic about the chances of developing a vaccine, even ten years later. In fact, Dr. William Paul, the Director of the Office of AIDS Research at the National Institutes of Health, argues that much of the research undertaken over the last ten years has been misdirected, and calls for a "back-to-the-basics" approach for research into HIV and AIDS.

Because contemporary medicine has been unable to produce quick results in the fight against AIDS, many people in the communities most affected by the disease have argued for changes in the way AIDS research is conducted. Initially, people with AIDS sought to increase their access to experimental treatments and to speed up the process by which drugs that might treat AIDS were brought to the market. As the epidemic has progressed, however, AIDS activists have broadened the scope of their critique to address more basic issues about research and treatment. As they move from arguing against the specific policies of government agencies, research institutions, and pharmaceutical companies, to a broader critique of the medical research establishment, AIDS activists have created a larger role in the debate for those most affected by the epidemic. In this process, they have found themselves arguing against doctors and researchers, pharmaceutical manufacturers, government officials, and increasingly, among themselves, over the nature and direction of AIDS research.(2)

This essay focuses on the controversy generated by disagreements over the nature and direction of AIDS research. Specifically, we identify two argumentative strategies AIDS activists use to claim the authority and ability to speak to issues surrounding AIDS research. The first strategy, which we label redefinition strips away the mystique that surrounds science, and enables others to participate in the discourse surrounding AIDS research. Activists challenge public images of medicine and science, by arguing that doctors' and researchers' efforts are driven by private political concerns in addition to medical and scientific issues. The second strategy, which we call translation, enables people with AIDS, doctors, and researchers to meet in the public sphere to discuss issues surrounding AIDS research and treatment. Activists explain scientific information to people with AIDS, and present the needs of people with AIDS to doctors and researchers. We also argue that activists' use of these arguments place them within the context of a larger movement in society, in which citizens reject the notion of control by experts, and reclaim for themselves control over larger aspects of their lives.

Texts for this study are drawn from literature published by AIDS service organizations and other activist groups. One of our major sources is Treatment Issues, a monthly newsletter published by the Gay Men's Health Crisis (GMHC), a New York City AIDS advocacy and service organization. Treatment Issues, with a monthly circulation of over 20,000, is dedicated to experimental AIDS therapies. According to the publishers, most readers are people with AIDS, but researchers, medical schools, libraries, other AIDS organizations, social service organizations, and politicians also subscribe. Another important source is AIDS Treatment News, a bi-monthly newsletter about AIDS treatment strategies, published in San Francisco. The first seven years of AIDS Treatment News have also been republished in three volumes, allowing them to reach a broader audience. Other sources examined include pamphlets, newspapers, newsletters, and other published material. In most instances, texts have been drawn from the last five years, to provide a contemporary view of the movement. At the same time, we have also included some material from the earlier stages of AIDS activism, to show the continuity of the movement.

This study is important for three reasons. First, it is important theoretically. The debate about AIDS research expands our understanding of how issues develop in different spheres of argument. We argue that AIDS activism shows how arguments about the same controversy can develop in all three spheres of argument, the personal, the public, and the technical. As Goodnight explains, arguments in the personal sphere "require only the most informal demands for evidence, proof sequences, claim establishment, and language use." Alternatively, arguments in the technical sphere require "more limited rules of evidence, presentation, and judgment . . . in order to identify arguers of the field and facilitate the pursuit of their interests." Arguments in the public sphere, however, require more fixed standards than do arguments in the personal, yet may (and often do) cross the boundaries of professional communities, and so cannot be reduced to the standards of any particular group ("Personal, Technical, and Public" 220).

An important focus of AIDS activism, we argue, consists in translating the arguments that surround AIDS as they move among all three spheres of argument. In a 1991 study of the group ACT UP, Brashers and Jackson argued that ACT UP succeeded in influencing AIDS research by penetrating the technical sphere of argument. They conclude that "it is not the fact of organized protest, but the nature of ACT UP's engagement with the experts that accounts for their success" (287). We argue that activists' success is also linked to their determination to publicize arguments about AIDS. In this conception, the public sphere acts as a meeting place, where experts and people with AIDS can meet on common ground. This view differs from that offered by Brashers and Jackson, who see doctors and researchers reluctantly accepting the arguments of people who have become experts on AIDS research, despite their frequent lack of technical credentials. Rather, this study suggests, activists seek to make research "publically accountable to the communities most affected" by AIDS (in Gamson 354). Thus, the shape of this controversy contributes to our understanding of how the public sphere operates between the private and technical constraints.

Second, the study raises important ethical issues. At the heart of the current interest in the public sphere of argument is a belief that vital and active publics are important to a democratic society (Calhoun, "Introduction"). Further, scholars note that the public sphere suffers as more issues are discussed and resolved on personal or technical grounds.(3) This is particularly true of AIDS. AIDS is often addressed as a personal issue, as individuals debate, for example, the morality of sexual practices through which the disease is transmitted, or as potential sex partners negotiate the difficult terrain of safer sex, or as people infected with HIV or AIDS decide whether and how to remain sexually active. AIDS is also addressed as a technical issue, as scientists and doctors review the latest findings in medical journals and at conferences and decide what impact these findings will have on their patients. AIDS activists, however, seek to make AIDS policy a topic for public deliberation, albeit in unusual ways. AIDS activists provide an especially interesting case study from an ethical point of view, because they are frequently criticized for the strident, uncompromising tone of their advocacy. At the same time, they offer "lively experiments with human communication" (Olson and Goodnight 273) that hold the potential for stimulating authentic citizen participation in arguments about public policy.

Finally, this study extends our knowledge of AIDS activism generally. Several previous studies have drawn attention to the phenomenon of AIDS activism and the rhetorical issues it raises. As we noted earlier, Brashers and Jackson focused on the group ACT UP and its attempts to influence the drug approval process. That study, however, focused exclusively on ACT UP's attempts to enter the technical sphere, without exploring the implications of activism for the public sphere. In another study, Gilder examines the importance of gaining control of public discourse about AIDS, but does not provide an explanation of how AIDS activists pursue this goal. We identify how activists gain both the authority and the tools to enter the public discourse about AIDS. In an earlier study, we provided an overview of the rhetoric of ACT UP (Fabj and Sobnosky). In this study, we focus more specifically on the relationship between AIDS activists and the medical community by highlighting the activists' ability to translate technical and private issues into public ones, and we expand our analysis to include other activist groups, providing a more comprehensive view of the movement. In addition, previous studies of AIDS activism end in the early 1990s. We provide a more contemporary view of activism which reflects the continued evolution of activist groups.

Additionally, the study of AIDS activism sheds light on other controversies in contemporary society. Conflict generated by public response to AIDS intersects with a variety of important social issues. Advocates and activists for people suffering from...