Someone else's problem
Social and cultural aspects of the AIDS epidemic
May 10, 2005
iranian.com 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.
About
Maziar Shirazi is a junior at Rutgers University, New Brunswick,
New Jersey. Features in iranian.com
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