This piece incorporates experiences from working with AIDS prevention/awareness NGO in Brazil, as well as my research into the social and cultural aspects of illness in the context of the AIDS pandemic. I hope all will enjoy reading this. For those who are unaquainted with the social side of the virus, hopefully you will find this an interesting lesson.
AIDS is the pandemic of my generation and the first of its kind, both on the geographical and the social scale. There is not a single region of the world where the effects of HIV/AIDS have not been felt, and while the well-documented death toll is monumental and continues to climb, there is another damage inflicted by the virus which is immeasurable. Its wake can be seen in packed orphanages, alleyways echoing with coughs and cries, and abandoned and broken homes. It is a caricature of the virus and not the virus itself that perpetuates the very conditions that have been statistically shown to create high risk environments for HIV infection, and the biomedical establishment simply has no effective way to deal with it.
Since its arrival in the public arena, HIV/AIDS has undergone a dramatic transformation. It is not simply a dangerous but treatable virus. To many people across the world, it is a threat to their values, morals, their very identity; people who sense this threat seek to protect themselves from the same monster that has been created from their own fears and biases. It is understandable, then, that the social consequences that persons with AIDS (PWAs) are subjected to often far surpass the corporeal damage that the disease itself inflicts.
The dilemma lies in the fact that a purely biomedical approach does not adequately tackle the deconstruction of the illness experience itself, which, in the case of AIDS, is integral to effectively treating and preventing the spread of the virus. This piece is an attempt to shed light on the social construction of AIDS and to show that incorporating a more culturally informed and compassionate approach towards afflicted persons is a necessary part of treatment and prevention.
The role of culture in shaping approaches and attitudes toward diseases cannot be understated, since our cultural ideas and biases shape what we come to consider as common knowledge. Lupton argues that “what is asserted to be 'truth' should be considered the product of power relations, and as such, is never neutral, but always acting in the interests of someone”, and that “knowledge is seen not as a universal, independent reality but as a participant in the construction of reality”.
In the case of AIDS, this is well illustrated in the disease's early reputation as “the gay plague”. The disease was thought of (by many in the scientific and political community as well) as a 'gay' disease; this assumption had no real scientific basis, but at one point was accepted as truth. Later, when it became apparent that the disease could affect heterosexuals as well, it became associated with marginalized ethnic groups, as well as with drug users.
It has been pointed out that each of the groups that were associated with AIDS were already actively stigmatized in the United States (Devine et al), and that even the professional community played a part in stereotyping AIDS victims: “Researchers were often expected to 'discover' homogenous 'cultures' and 'communities' of gay men and drug users, and by so doing change their behaviour… implicit in this notion was the belief that the 'culture' or 'sub-culture' itself creates risk” (Abdulrahim). This seems very strange when put into the context of our prevailing views on disease today in the era of biomedicine. The inevitable question is: why such a strong tendency by people, including a number of healthcare professionals, to put a cultural label on a disease, something that the biomedical community had reduced to a matter of pure science?
A closer look at social identity theory yields some insight: it holds that “several psychological processes operating in the service of promoting self-esteem result from the act of categorizing oneself and others into groups” (Devine et al). People establish and maintain positive social identities through comparison with “outgroups” of society. In the case of AIDS, as well as with other social phenomenons such as racism and classism, these comparisons have evolved into prejudices and systematic discrimination on part of a large segment of the population.
Within this framework, we can better understand why the AIDS stereotypes that we have all been exposed to tend to be directed towards various marginalized groups, such as homosexuals, immigrants, sex workers, and drug users. Devine and her colleagues hold that “AIDS stigma is inextricably intertwined with social identities and the motivation to maintain positive social identities” and “a great deal of negativity toward PWAs arises out of uninfected people's need to protect their identity as healthy and non-deviant”. Whether among majority or minority populations, the need to protect core values and identity play a key role in defining HIV/AIDS as a foreign disease that the unaffected population is somehow (morally) immune to.
Casework centered on interviewing people on their culture's attitude about HIV infection and those who were at risk for infection reflected these feelings. What was taken from several interviews with Cypriot drug users in London was that most of their cultural brethren felt safe from infection because of the moral and superior upbringing that their culture afforded them (Abdulrahim). The general consensus was that “as high-risk HIV behaviours are generally constructed as the behaviours of the 'Other', HIV is turned into a signifier of the potential 'corruption' of young people and women by the dominant society and culture and of the moral disorder resulting from migration and contact with the host culture and society.”
Thus, for many ethnic Cypriots in London, staying away from mainstream culture was a way to protect oneself from AIDS, as if high-risk behavior itself was foreign to their culture. On the other hand, it seems ironic that among the mainstream white population in London, “HIV continues to be associated with homosexual men, injecting drug users and sub-Saharan Africans, and these continue to define HIV as a metaphor for 'Otherness'”. Thus it follows that among the majority, minorities and so-called subcultures represent risk groups, while minorities believe that the majority culture is the real risk factor for HIV infection.
Common to both perspectives is the social construction of AIDS as a “threat to core social values” (Devine et al); it is then no surprise that PWAs across the world are often blamed for what others see as a moral deficiency implicated in their infection. Echoing Kleinman's argument, this highlights the inability of biomedical medicine and insight alone to effectively deal with AIDS treatment and prevention, as it is clearly not just a medical phenomenon. PWAs not only have to deal with a very real and dangerous disease as well as its strenuous treatment regimen, but also subtle as well as systematic discrimination: “they have been fired from jobs, driven from their homes, and socially isolated”.
Effective HIV/AIDS care and prevention requires the integration of a compassionate, anthropologically and culturally informed framework that will call into question the discriminatory categorizations of PWAs by general society and subgroups therein.
My personal experience with GAPA Bahia, a Brasil-based non-governmental organization dedicated to AIDS prevention and awareness, strongly supports this conclusion. In working with infected persons in our Adesão group (a support group to educate about HIV/AIDS, encourage PWAs to take their medicine, share thoughts and feelings, and learn to lead a happy life after HIV) over the course of a month, GAPA workers encouraged discussion of life with the virus as a way of sharing perspectives and finding common ground. Furthermore, they used many culturally relevant and frank examples when discussing issues and spoke in a way that everyone could relate and respond to.
People in the group were of all classes, colors, and genders, and some were HIV-negative family or friends; it was stressed repeatedly that anyone could be infected by HIV, in many different ways. This put the issue of cultural categorization on the table, which was discussed with constructive results among the PWAs and GAPA workers; at the end of these sessions (in which most would stay the whole time), people would leave with smiles, discussing their doubts and worries more openly, and would return to subsequent sessions. These positive results stood in stark contrast to Adesão sessions run by hospital staff, a prime example of what can happen when “HIV/AIDS intervention programmes… are flying blind and culturally rudderless” (Singhal).
The doctor directing the support group would make clear distinctions between uninfected and infected persons, referring to the PWAs as “voces, os portadores” (you, the carriers). She dryly lectured the group, and did not once stop to allow anyone to voice his/her opinions or concerns. Patients were told to take their medication and abstain from unprotected sex and needle sharing. Never once was the taxing physical and mental process of taking medication acknowledged, nor the various high risk behaviors known and practiced within the local culture.
Worse, many people were unable to follow the doctor's discussion because of the excessive amount of jargon she used and did not bother to define or explain. As a result, many people left the meeting early, without the same results produced by the engaging and comprehensive GAPA-directed sessions. Several HIV carriers that were regulars at these meetings commented after the session that this was precisely the kind of intervention that drove people away from seeking help and made the experience of living with HIV/AIDS ever lonelier.
What this case study demonstrates, among other things is that the damage done by AIDS stigmatization can be mitigated by a reevaluation of who can contract AIDS and what it means for those who get infected; both HIV positive and negative persons require exposure to this reevaluation, as both groups are influenced by prevailing views about getting infected. The study also strongly suggests that an impersonal biomedical approach is by itself insufficient for prevention and combating discrimination, and that personal engagement, as well as an appreciation of cultural mores and context, are vital for long term results. Thus, “a broader conception in terms of social identities and the nature of the threat to social identities created by AIDS may ultimately prove more productive in reducing the ill effects of AIDS stigma” (Devine et al).
There is no quick fix to the AIDS pandemic, as ignorance, fear, and silence continue to spread the virus and burn bridges between . With no cure or vaccine, the only way to fight the disease is to focus on prevention and treatment. If we do not reach out to the people already infected by HIV, we are further isolating the very people that need to feel like they are still a positive part of society, essentially leaving them to die and potentially infect others in the process. The myths about HIV/AIDS can overpower a person's will to fight it, acknowledge it, and thus prevent its transmission. The only real way to disprove the myth is to deconstruct it.