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10 Lessons for the World

Anna Aulette-Root Indiana University Press ePub

Five Discourses Emerged in our analysis of the interview transcripts: (1) being normal through work and men; (2) disclosure for better or worse; (3) taking care of children; (4) caring for violent men; and (5) women’s bodies. Sometimes these mirror the dominant discourse about HIV, sometimes they pose alternative discourses, and always they reveal the tensions and links between oppression and resistance.

Our discussions of these five topics shows the women we interviewed drawing upon common ways of talking about femininity and normalcy as a means to reconstruct themselves as humans in the face of dominant discourses, which present HIV-positive women as something less than human. All five topics share an overarching core feature of wrestling with the problem of stigma and using notions and practices of femininity to attempt to overcome stigma and appear as normal and acceptable. Within each discourse, however, we also found ambiguity, contradiction, and resistance. At the same time the women attempt to appear “normal,” they also question and sometimes even challenge these constructs of what it means to be real women.

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1 Women Living with HIV

Anna Aulette-Root Indiana University Press ePub

This Book is about women living on the margins. Already pushed to the edges by systems of inequality and oppression through global politics, social class, racism, and gender injustice, they are forced even further from the center by their HIV-positive status. This book is also about women who have devised strategies to bring themselves back to “normal” and to challenge what is considered normal. The women whose voices we hear in the text are living with HIV in Cape Town, South Africa, an area hard hit by the HIV pandemic. By listening to their stories we are made aware of new ways to think about HIV, and, most importantly, we learn lessons that are essential for understanding HIV and determining effective routes to its demise.

At the February 2010 annual meeting of the American Association for the Advancement of Science (AAAS) in San Diego, research fellow Dr. Brian Williams, of the South African Centre for Epidemiological Modeling and Analysis in Cape Town, announced that if we could aggressively distribute antiretroviral medicines (ARVs) to everyone who is HIV positive, we could stop the virus from spreading and eventually eliminate it from the globe. ARVs reduce the viral load, the amount of HIV detectable in blood, so dramatically that those who are HIV positive become nearly noninfectious (BBC, 2010). This is a bold and apparently valid idea, but it is a goal that cannot be met if we do not take into consideration the social and political character of the human community, perhaps especially the factor of gender injustice.

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4 Marginalizing the Marginalized through Multiple Stigmas

Anna Aulette-Root Indiana University Press ePub

AIDS is a war against humanity. We need to break the silence, banish the stigma and discrimination and ensure total inclusiveness within the struggle against AIDS. If we discard the people living with HIV/AIDS, we can no longer call ourselves human.

Nelson Mandela

Most Scholars and activists now recognize stigma as one of the most important factors in the lives of people living with HIV (Mahajan et al., 2008). There is no escaping the stigma that is attached to HIV. Everyone who is living with HIV is stigmatized to some extent. The experiences of that stigma, however, fluctuate across many variables, including gender. Women and men are stigmatized differently—for example, there are differences in regard to the extent to which men and women are blamed for their actions that supposedly led to their HIV-positive status. The blaming that occurs in HIV stigma is linked to gender and reproductive roles that define “good” and “bad” behavior and “wrongdoings,” especially sexual “misbehaviors,” which are different for men and women. Most women are still held to a double standard that expects them to be less interested in sex and more responsible for controlling both their own sexual behavior and that of their men partners (Lorber & Moore, 2002).

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6 Staking a Claim as Normal through Work and Relationships with Men

Anna Aulette-Root Indiana University Press ePub

Stigmatization Appears to be a major barrier for women to overcome in order to disclose their HIV status. While stigmatization is a critical factor for everyone living with HIV, the force of stigmatization may be intensified in specific ways for women, since they must make their way through the multiple layers of challenges of particularly gendered forms of HIV stigmatization. Gendered HIV stigma may be internalized, causing psychological pain, or it may manifest itself in more concrete ways, such as preventing women from working or going to school and thus making them feel they are not valued members of society and unable to realize their full potential as human beings. Nevertheless, women find ways of shielding or “disguising” themselves from the full force of gendered HIV stigma and othering that takes place in their lives. One way women respond is to find ways to normalize themselves. Discourses about men and about work emerged in our interviews as normalizing processes to counter stigma.

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5 Disclosure for Better or Worse

Anna Aulette-Root Indiana University Press ePub

For those who are HIV positive, disclosure is an essential step. If nothing else, they must at least disclose their status to health-care providers in order to obtain care and medicine. Disclosure also contributes to a person’s ability to take care of themselves and to plan ahead for their care and treatment. However, disclosure is not easy. Telling others that one is HIV positive is always difficult and sometimes impossible. The stigma associated with the virus creates a monumental problem. Not surprisingly, in our interviews with HIV-positive women, a significant discourse emerged around the issue of disclosure.

The decision to disclose one’s HIV status and the process of then doing so are constant worries for the women we interviewed, and their conversations with us revealed their dilemmas and decisions regarding disclosure in myriad ways. Three main areas seemed most salient: (1) disclosing at work and the favorable and unfavorable consequences of doing so; (2) disclosing to children and mothers of the women, particularly the issue of fearing their reactions; and (3) disclosing to acquaintances who are not well known or even complete strangers as a way of seeking acknowledgment for being a survivor and activist and as a way of following the advice of medical and psychological authorities.

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