Social Movements & Illness

The function of education is to teach one to think intensively and to think critically. Intelligence plus character – that is the goal of true education.” – Martin Luther King, Jr.

As today is MLK day, I thought this might be a good moment to talk about social movements. Social movements are in many ways the “true” form of education in that they teach one to think “intensively and critically.” In honor of Martin Luther King Jr’s efforts in the Civil Rights Movement, today’s post will talk about the power of social movements in shifting public perception. We see this currently in movements like “Black Lives Matter” and “#MeToo.” I would like to focus on a social and political movement tied to a particular illness: HIV/AIDS.

HIV/AIDS, in many ways, began as a social and political movement. Initially a campaign that alienated gays and then drug addicts and prostitutes, AIDS was recognized as a virus that targeted particular groups; in particular, ones that were socially marginalized and misunderstood. In reality, however, AIDS, like many diseases, does not discriminate. As much as the discriminators wanted the physical manifestation of a disease to validate their reasons for discriminating against certain groups, they too succumbed to AIDS. John Hubbard’s documentary United in Anger and Steven Epstein’s “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials,” highlight the important role activists played in shifting the ways in which American society perceived the virus.

United in Anger was especially powerful in showing to what extent AIDS became a social movement, one very similar to other civil rights movements. Indeed, Act Up’s efforts to “Act Up, Fight Back, Fight AIDS” also served as an outlet for gays and women to “fight back” against social labels and categorizations (Hubbard, 2012). The protests of the Act Up activists illustrated that “civil disobedience as a safe tactic” was  “way of getting media attention” (Hubbard, 2012). Act Up powerfully united multi-generational groups across the country. While there was a sense of entitlement among the members of the group in that they predominantly came from families that could afford healthcare without much problem, this entitlement, and then its absence in the presence of AIDS served as a fuel for the fire of activism. As one activist member said, “[there was a] sense of entitlement that was really good for the group,” she went on to explain that there is nothing worse than realizing one’s entitlement has been taken because of the label associated with AIDS. Furthermore, this “entitlement” compelled activist members to seek out AIDS victims from background different from their own, that is, the homeless, black women, more women, straight men and women. As the movement grew in size and its protests grew in passion, the Act Up media campaign further solidified the group’s growing presence in the country spotlight. In taking a personal and relatable stance, Act Up made AIDS more of a real presence to those who had previously thought the virus had nothing to do with them. An Act Up member put in concisely, “what AIDS revealed was the problems of our society, this fissure through which all the ways our society isn’t working became clear” (Hubbard, 2012); Act Up sought to bring about social change as much as it wanted to find an answer to AIDS.

Steven Epstein echoes many of the sentiments expressed by the activists in Hubbard’s documentary. Epstein examines the role of credibility in instilling change. The Act Up teach-ins , or sessions designed to educate activists about the issues, were important for maintaining and strengthening the credibility echoes by Epstein. Epstein writes “but to engage fully with the project of biomedical research, treatment activists needed to undergo a metamorphosis, to become a new species of expert that could speak credibly in the language of the researchers” (Epstein, 1995). Protests against the FDA, the CDC, or the NIH were taken more seriously when activists had an intense knowledge of the biological underpinnings of their illness, and researchers were more receptive to activists who possessed such credibility. This credibility made the fight against AIDS campaign more of a credible and respected one, and in this way was able to illicit change more rapidly (Epstein, 1995). Many activists used the very fact that they were AIDS victims, and therefore had a perspective on the disease that no researcher could claim to posses, in their campaigning strategy; this was highly effective. The emotionally charged, physically straining, and psychologically draining impact of a disease like AIDS, though painful, was itself a form of credibility. Indeed, even death by AIDS served as a form of credibility. In united In Anger, activists brought the dead bodies of their loved ones up to Washington to try and underscore the very realness of the illness. The deceased reflected one activists’s words, that “when the living can longer speak, the dead speak for them” (Hubbard, 2012).

However, it is important to note, as Epstein does, that many activists “have been more interested in participating in science- or asserting the simultaneous importance of values other than the pursuit of science- than they have been in transforming the practices by which science constitutes knowledge” (Epstein, 1995). I understood this to mean that activists seek to establish credibility by inserting themselves in the field of science and also by arguing that what they have to offer (the non-science elements) are equally as valuable to understanding an illness like AIDS. Science, however, often constitutes knowledge in a very cool and calculating way; one that tries to remain objective in situations that are frequently inherently subjective. Indeed, science, in its claim of objectivity, represents itself as the ultimate truth. The issue arises when this “objectivity,” is, in fact, the opposite. When AIDS was first called the Gay-Related Immune Deficiency, or GRID, science presented the name under the guise of objectivity; AIDS was a disease specific to gays, an indisputable truth, so indisputable, in fact, that its very name contained it. Perhaps, Epstein is suggesting, that activists should also address the root of the problem; they should invest energy in changing the way science deals with knowledge, or the ways in which science regards itself as the only truth. Potentially, this is another social movement in the making, thought it will take time for such a large-scale reform to establish its own credibility and actually introduce change.

Steven Epstein and John Hubbard illustrate the power of civil disobedience and social movements to affect change in our country. AIDS is a deadly disease. The social labels, stereotypes, and assumptions about the disease only furthered the lethal impact of the virus. Social activists sought to fracture these social stigmas in an attempt to weaken the barrier built up by years of marginalizing gays and women, among other groups. Act Up was particularly powerful in compelling government institutions like the Food and Drug Administration and the National Institute of Health to change their approaches to AIDS and to look at the virus with a sense of urgency. AIDS, after-all, is a non-discriminatory disease. Unlike the American society into which it entered, AIDS was blind to race, gender, and socio-economic status; it accepted anyone and everyone as its victims. Act Up tried to send this very message to American society, and to an extent it succeeded. Today, the social stigmas surrounding HIV/AIDS, and other diseases, remains. However, AIDS is now a war to be fought, rather than an illness to be forgotten. It was due to the passionate efforts of thousands, who worked hard to establish their credibility, that AIDS became a legitimate medical illness rather than a plague that had befallen the sinners of society.

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