Freddie Mercury, lead singer of Queen, sings “Who wants to live forever… Who dares to love forever… when love must die,” in a song written in response to his AIDS diagnosis, in 1986. Despite that it took Mercury several years to finally disclose his diagnosis to the public, these lyrics seem to ring true throughout his experience with the disease. While suffering immensely, losing his sight and strength from AIDS, he stopped taking his medications and decided to let AIDS run its course and end his life. “Most people with HIV can more or less ignore the fact that they are infected with a fatal virus for many years. But when they have to start taking drugs, death casts its shadow over their consciousness at least twice a day. It becomes harder to hide their infection from family or friends once they start popping pills on a regular schedule.” (Pisani 184) The day before he died, in 1991, is the day he publicly announced that he had AIDS, then becoming one of the first major rock stars to die of the disease. Many thought that if he would have spoke about his disease sooner that he could have greatly helped AIDS awareness, but Mercury made his own decision as an individual to continue to keep his personal life to himself and those close to him. (Wikipedia)
One’s individuality may be compromised when contracting a possibly fatal infectious disease, such as HIV and AIDS. It is understood that you must not only inform family and friends, but any person that you come into sexual contact with. You must inform doctors, nurses, and dentists that you have this disease. You must receive counseling before and after your test and again with your diagnosis. You may have voluntarily taken the test and signed a consent form for your diagnosis to be reported, but contracting AIDS takes away a certain amount of your privacy through obligation to those around you. For the safety of your community, it is important to lose this level of privacy, but how do you keep some amount of individuality and how do you keep what individuality you have left sacred?
The stigma of having AIDS have been examined thoroughly by Susan Sontag in her essay, “AIDS and Its’ Metaphors,” exemplifying how society has come to look down on those with the disease. AIDS is even sometimes viewed as a punishment for immoral acts or due to being in a lower class of society. This stigma removes the idea of the individual and puts people in categories, similar to herding cows into one area so that they are easier to control. Elizabeth Pisani deals with the idea of sacred cows in her chapter of “The Wisdom of Whores,” titled just that- ‘Sacred Cows,’ which point out the key factors that activists hold sacred in the world of AIDS. It also touches on the stigma of AIDS, which relates back to the metaphors that Sontag wrote about. Pisani like Sontag notices the differences between AIDS and other viruses, such as the flu or cancer, by explaining that she has been described as an AIDS activist. She comments that there are no activists for flu or cancer or other viruses, but there are AIDS activists. (Pisani 161) This then leads to a connection to Joshua Gamson’s essay, “Silence, Death, and the Invisible Enemy,” which focused on social movements and the activism of AIDS. The stigma surrounding AIDS is what lead to the necessity of AIDS activism. No one is judging those that have the flu or cancer, but everyone seems to be judging people with AIDS. Despite that the activism is trying to overcome the stigma, there are still problems that our government, the World Health Organization, and even groups focused on fighting to end AIDS are not acknowledging.
“We’ve inherited a lot of sacred cows from the admirable godfathers of activism, and we have rarely dared to question whether we really want or need them. Once, as we’ve just seen, is that HIV testing exposes people to stigma.” (Pisani 161) However, it was thought that activism should be helping to fight the stigma of AIDS, but as we have seen ACT UP, AIDS Coalition to Unleash Power, fighting to end AIDS, in such writing as Gamson’s essay, the stigma still exists worldwide. Sontag dates the use of stigma of epidemics back as far as 1529 and follows it to what was the present when she wrote her essay in 1988. Her essay left readers with the question of how do we stop the stigma, in which we found a possible answer in Gamson’s essay with social movements and activism of AIDS. Pisani then examines the problems that may exist within the activism of AIDS in her writing. This shows a cycle that is created where a group is judging another group and may think they know best. Another group is trying to save the second group from the first because they think they know best and while maybe repairing some problems, also creating more problems for both groups. The individual gets lost in this cycle and what is best for everyone gets lost within it also.
In Pisani’s writing, she describes that “In Indonesia some compare the HIV epidemic to a water-buffalo slowly pulling itself out of the mud to reveal its true size.” (Pisani 169) The AIDS epidemic started to show it’s face slowly, as if poking it’s nose and then head out of the mud. The disease began to be acknowledged, but only on a small scale with people thinking that only certain groups were infected, such as homosexuals, intravenous drug users, and the poor. As the water buffalo’s neck, chest, and even front two feet began to appear, the disease started to show itself more. The world began to realize that AIDS could affect anyone, and even if it was most prominent in those communities they first thought it belonged to, those communities could spread the disease to other communities. And as the entire body of the water buffalo and the AIDS epidemic showed itself, the disease was spreading world wide and not discriminating. This is when the world of AIDS and the concern for the disease and those infected shifted from focusing on the individual or even small groups to large communities, populations, and the entire world.
Governments and health organizations began to realize the need for an answer, if not a cure, that medication to help this epidemic. Focus on treatment began to take hold of the world of AIDS and the antiretroviral drugs used to treat the disease became more accessible. But the world became “so focused on trying to increase the number of HIV-infected people on antiretroviral treatment that we ten to let people who test negative go away with nothing more than a handful of condoms and a little lecture about staying safe.” (Pisani 173) Treatment was the way to help heal the water buffalo that was stuck in the mud, but the world may have begun to dismiss how the water buffalo got stuck in the mud in the first place. Focusing on treatment is focusing on the larger group, while prevention seems to focus on the individual. Thinking that treating as many people infected with AIDS as possible will make the epidemic go away is a lack of acknowledgement for where the epidemic began, with the individual. Having each person, with a negative or positive diagnosis of HIV, choosing to use condoms every time they have sex could stop many more people from possibly contracting the disease. “More treatment means more people with HIV, potentially taking more risk and exposing more other people to the virus. We need to make sure that we have the money and the staff to bump up prevention services as more people get treated.” (Pisani 165) If someone who contracts AIDS is not educated on prevention, they are more likely to spread it. It is a cycle that must be stopped somewhere and treatment is not a cure. Prevention may be the closest thing the world has to a cure for AIDS, therefore activism and education need to start with the individual and then take on the larger ‘water buffalo’ of AIDS.
Individuality is something of value to everyone and having your individuality unnoticed is hurtful to everyone, and the world. Every larger group is comprised of smaller groups and individuals make up those groups. A person with a positive diagnosis of AIDS may seem to lose your individuality through becoming part of a larger group. A larger group that is stigmatized, a larger group whose rights are fought for, a larger group who people are trying to treat. Some people are trying to help make this group not become any larger. How AIDS is dealt with is the responsibility of the world, but how we view it is up to the individual. Those infected with HIV must find ways to keep their individuality sacred, even when they seem to be losing their privacy amoung many other things. As some people choose to continue to fight to end AIDS through activism, others like Freddy Mercury will choose to maintain their individuality and keep their cow hidden within themselves until they are ready to face it and let it come out of the mud to show the world.
Gamson, Joshua. Silence, Death, and the Invisible Enemy: AIDS Activism and Social
Pisani, Elizabeth. The Wisdom of Whores: Bureaucrats, Brothels, and the Business of
AIDS. W.W. Norton & Company. 2008. pg 161 -187.
Sontag, Susan. AIDS and Its Metaphors. The New York Review of Books. 1988.