Ensnared by AIDS. David K. Beine
of approximate objective truth, while embedded in human culture, is at least attemptable.
There is also a danger, however, in minimizing the role of culture in the production of scientific fact. Farmer (1992), for instance, demonstrates that the construction of the biomedical model of AIDS in America in the early years of the epidemic was strongly influenced as much by the North American folk model of Haitians (which posited certain Haitian voodoo practices as the cause of AIDS) as it was by biomedical science.37 One must strive for reason in the balance between these two positions.
Whether or not one stands in the first camp (of epistemological doubters), or, as I do, the second (of methodological doubters), both groups acknowledge that culture shapes our perceptions of illness and disease. This is true of AIDS as well.
2.2.1 Various cultural models of AIDS
There are various socially constructed cultural models of AIDS around the world.38 Paul Farmer (1994), for instance, traces the development of a cultural model of AIDS in Haiti. Farmer’s research illustrates a widely shared representation of the new disorder that has developed over time. To the Haitian, AIDS (known as SIDA in Haiti) is conceptually understood as (1) a new disease; (2) strongly associated with skin infections, “drying up,” tuberculosis, and diarrhea; (3) can be caused “naturally” (via sex) or “unnaturally” (“sent” to another through a kind of witchcraft); (4) caused by a microbe; (5) transmitted by contact with “dirty blood;” and (6) is viewed as a product of a larger problem of North American imperialism, lack of class solidarity among the poor, and corruption among the ruling elite (Farmer 1994:805–806).
Although not explicitly identified as a cultural model of AIDS, various widely shared conceptions about AIDS have existed in America since the inception of the disease. Using several recent histories about AIDS, a cultural model can be posited which developed during the early years of the epidemic here in America. As mentioned previously, the first component of this cultural model was that AIDS was a “gay disease” (American Foundation for AIDS Research 1999:376; Flynn and Lound 1995:11; Giblin 1995:197). This concept soon widened to include other marginalized “bad people” such as intravenous drug users (Flynn and Lound 1995:14; Herdt 1999:3). This, coupled with the second element of the early model that AIDS is infectious, resulted in stigmatization toward the disease and anyone associated with it. The final, and perhaps most powerful element of the newly emerging cultural model, was that AIDS was fatal (Flynn and Lound 1995:55). This recognition often led to irrational fear. People feared touching HIV positive persons (Flynn and Lound 1995:55) or even sitting near them (Giblin 1995:135). We feared using utensils that AIDS infected persons might have used (Flynn and Lound 1995:56; Giblin 1995:135). We even feared getting AIDS by sitting on public toilet seats (American Foundation for AIDS Research 1999:376; Giblin 1995:134). These were all elements of the early cultural model, or what meaning people associated with AIDS during the early years of the epidemic in America.
While the average American (following the early cultural model) took refuge in AIDS only being a gay disease, the early cultural model developing in Britain focused on AIDS as a life-threatening heterosexual disease of epidemic proportion which was a “danger to the general population rather than a specific ‘risk’ group” (Berridge 1992:52). This is not to say that there were not some in Britain who associated AIDS with the gay community, but those who were involved in early education, and therefore the formulation of a wider cultural model, focused their efforts on the “need for public education to stress the heterosexual nature of the disease rather than the ‘gay plague’ angle of the popular press” (Berridge 1992:59). This had its impact upon the resultant cultural model of AIDS in Britain. Like in America, fear was a major early reaction to the newly emerging life-threatening disease, but the use of public policy to construct a cultural model that considered such fear as unwarranted “moral panic,” had a positive impact upon popular views in Britain. So, although the early British cultural model shared some features with the American model (fatal and infectious), it also differed in significant ways that lead to the formulation of a different cultural model of AIDS in the two countries.
If one were to analyze in the same way the countries of Africa, where the infection attacks men and women equally, other cultural models of AIDS would emerge. Cultural models are a unique combination of factors. There may be shared elements in the cultural models of AIDS in many cultures, but the unique situations specific to each culture may also affect the construction of various unique cultural models of AIDS, as has been demonstrated. Nepal has yet different cultural models of AIDS; cultural models based on her unique culture, history (including political structure), economy, geography, and religion. Having made the point that different cultures construct different cultural models of AIDS, however, we will see in the next section that one characteristic of a cultural model is its ability to change over time.
2.2.2 The changing face of AIDS
One major feature of cultural models is that they are dynamic. Farmer (1994) and Berridge (1992) have both traced the change of the dominant cultural model of AIDS through the years in Haiti and Britain, respectively. The “face of AIDS” in America has also changed through time. In the early years, AIDS was perceived to be a fatal, infectious disease. Then with the advent of the newly available ARTs in the mid to late 1990s, the image of AIDS in the USA, as in the rest of the developed world, began to be modified from understanding AIDS as an “acute” problem to more of a “chronic” condition (Herdt 1992:11). Even though the numbers of new HIV infections was on the rise in the USA at that time, the death rate for AIDS related deaths dropped in 1996 for the first time since the advent of the epidemic (The Register-Guard 1997:1). The American media then boasted that “AIDS has been contained.”39 Furthermore, it proclaimed that the once certain “death sentence” had then become a “chronic manageable condition” (Treichler 1992:88).
A National Public Radio story (NPR 1999) at the end of the century even featured HIV positive couples having children, an idea that was once taboo for HIV-infected persons. This trend illustrated the shifting cultural model of AIDS in America. With improved prospects for longevity provided by the new drugs—life expectancies had increased from months to decades— many couples with HIV wanted to start families. New technologies, such as a new method of in vitro fertilization that included “sperm washing,” were also reducing the risk of passing the virus to unborn children. The available new drug therapies began changing the cultural model of AIDS for those who were HIV positive. On the radio program, one HIV positive interviewee commenting on his improved health said, “For ten years we had been waiting for an illness that would be the final one. Now we say, dammit, let’s start living.” Another HIV-positive interviewee added:
If you asked me five years ago whether people with HIV should have children I would have said no. Medicine is so improved now that I’ve gone from close to death—very sick—to undetectable levels of the virus in my system. I am able to work and function normally. And that’s something I couldn’t do five years ago.
This man’s wife, also HIV positive, speaking about HIV in the past said, “It was definitely a death sentence then. You were given your diagnosis and out into the world you went. And you waited like a time bomb for the bomb to explode.” This couple’s nine-year-old daughter, also HIV positive from birth, commented that her friends at school considered her “lucky” to have HIV. She said that her friends didn’t make a big deal of her HIV status and that they even considered her lucky because she got to go to special camps and do other neat things that her friends didn’t get to do. In response to her comment, the commentator asked in surprise, “Do you feel lucky to have HIV?” The girl responded in the affirmative, echoing the response of her friends regarding the “neat opportunities” and also added that her trips to the doctor had been fun. She was also on the new medications and hadn’t yet been sick. It is clear that the cultural model of HIV and AIDS had begun to change dramatically for these people. The motif of the AIDS sufferer went from “dying from AIDS,” to “living with AIDS.”
Around this same time there was another interesting and dangerous phenomenon that began to take place in the American and other nations’ cultural models of AIDS. What some researchers refer to as “AIDS fatigue” had set in. Singer (1999) reported the words of one of Thailand’s leading AIDS workers: “We’ve become used to AIDS because someone is