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South African Women Living with HIV: Global Lessons from Local Voices

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Based on interviews with women who are HIV positive, this sobering pandemic brings to light the deeply rooted and complex problems of living with HIV. Already pushed to the edges of society by poverty, racial politics, and gender injustice, women with HIV in South Africa have found ways to cope with work and men, disclosure of their HIV status, and care for families and children to create a sense of normalcy in their lives. As women take control of their treatment, they help to determine effective routes to ending the spread of the disease.

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1 Women Living with HIV

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.

 

2 The Cape Coloured Community

ePub

This Book is about women who face stigma, discrimination, poverty, and violence. It is about women who do care work for children and men, and whose responsibilities sometimes force them to make choices between their own needs and those for whom they are caring. And it is about women who must contend with all of these challenges at the same time they fear for the deterioration of their own physical selves and their lost beauty as a result of HIV. Women all over the world face similar challenges, and in that sense the women in our study represent the experience of women across many borders. The women in this case, however, also represent one particular community on the globe with its own unique history and its own particular expectations about women. This case study is about Coloured women in Cape Town, South Africa. Who are these women?

In the United States the word “colored” is an offensive holdover from the period in American history when apartheid was legal under Jim Crow laws. In South Africa, however, while there is controversy surrounding the language used to describe various groups of people in the country, the term “Coloured” is generally not perceived as a derogatory term. In fact, it is widely used by people who identify themselves as Coloured. The identity of Coloured and the character and experience of the Coloured community is an important feature of South Africa to be explored. And as our research unfolded it became an essential issue for discussion in order to understand the lives of women in the Western Cape who identify themselves as Coloured. This chapter describes a little of the history of Coloured people through slavery, colonialism, apartheid, and the struggle that finally toppled a racially defined government in the 1990s. It also provides some context for understanding contemporary issues in the Coloured community as South Africans continue the fight to depose the deeply entrenched social, economic, and political remnants of that history and as Coloured women face all of these issues in addition to gender injustice.

 

3 A Support Group for HIV-Positive Women in Cape Town

ePub

The First Cases of HIV were identified in South Africa in the early 1980s. The numbers affected by the epidemic grew fairly slowly in the 1980s and early 1990s but exploded in the late 1990s and the first decade of the twenty-first century. At first the government was unprepared to deal with the problem. Then in 1998, AZT (azidothymidine), an antiretroviral drug especially useful for inhibiting mother-to-child infection, became available to those who could afford to buy the medicine. Initial distribution of AZT faltered when the South African government decided it was too expensive, and the health minister said the state’s primary focus would be on prevention rather than treatment. The government continued to drag its feet in making the drug available, claiming it was concerned about the efficacy and potential dangers of antiretroviral medicines. As recently as 2005, government officials continued to issue controversial and scientifically unsubstantiated justifications for not providing ARVs to HIV-positive people in South Africa. Some HIV activists in South Africa, as well as people in government, were vocal about their skepticism regarding the efficacy and safety of ARVs. A few went so far as to question whether the new drugs were yet another deadly experiment the West was conducting in Africa. This view, however, is unquestionably a minority one, although it has been articulated by some of the most powerful people in the country. Former South African health minister Manto Tshabalala-Msimang, for example, endorsed foods such as garlic, beetroot, and lemon juice as valid alternatives to ARVs for the treatment of HIV. She argued her position in national discussions and before the world in a speech at the International AIDS Conference in Toronto in 2006 (Lewis, 2006), but her speeches were immediately condemned around the globe, most vehemently from within South Africa. More recently, skepticism about ARVs has waned as people in countries who previously did not have access to them are finally able to use at least some of the medicines and see the real and positive effects of the drugs.

 

4 Marginalizing the Marginalized through Multiple Stigmas

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).

 

5 Disclosure for Better or Worse

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.

 

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

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.

 

7 Care Work

ePub

The Women we interviewed spoke frequently of work in general and about care work in particular. Many of the women in our study fear for their own day-to-day survival in terms of just finding enough food to eat and not suddenly dropping dead of HIV (several women expressed this as their greatest fear). Despite these real concerns about themselves, they also talked about taking care of their men partners and their children and worrying about the care work that remains undone. In the next chapter we will look at the care work women do for their partners and how that work oft en takes place in the context of violent relationships. This chapter focuses on the general issue of care work as it relates to people living with HIV and care work that the women in our study do for their children.

Care work is a central feature of nearly all women’s lives, and it is a core component of the dominant versions of the social construction of femininity: emphasized femininities. In most societies, including South Africa, to be a woman is to be expected to do care work—in fact, to spend a lot of time providing care for others. The issue of care, not surprisingly, emerged as a significant discourse in our interviews. Care work was discussed in two related forms. First, the need for care is critical among people living with HIV; the women in our study reflected that need and the difficulties they face in finding, or, more oft en, not finding, adequate care. Second, the care work that women provide for their families is an important part of their lives and an essential aspect of how they construct themselves as women. For these women, constructing oneself as feminine and normal ideally includes living in an intimate relationship with a man and working for a living. Another feature of femininity that is central to the experience of the participants is taking care of others, especially the children and men in their lives. The issue of care work is one that emerged as a key factor in the discourse of women as they described their experience of HIV, the challenges they face, and their efforts to normalize themselves in spite of these challenges.

 

8 Care Work and Violent Men

ePub

Chapter 7 Described the problems with care work that women do, especially for their children, but problems also exist in the care work they do for the men in their lives. Ironically, the discussion of care work for men in our interviews with the women was mostly talk about men within a context of abuse. The women are caring for men partners, despite their own HIV-related problems and, even more surprisingly, despite the abuse inflicted upon them by the men for whom they are caring. Women drew on discourses of femininity in describing how men need their care, even in abusive situations. Some of the women acknowledged that being a “proper wife,” which includes caring for men’s sexual needs, has taken a toll on their physical health, yet they continue not only to live with their male partners but also to take care of them. The following excerpts illustrate the women’s struggles to take care of men, many times in the midst of an abusive relationship.

Shareen’s trouble started when she got married, two years before we interviewed her. A short time into the marriage she found out about her husband’s positive HIV status when she visited him in the hospital. She had taken the liberty of reading his medical chart at the foot of his bed, which listed him as being HIV positive. Once she learned that he had tested positive, she believed it was necessary to have herself tested for the virus. She explained to us how painful it was to get tested secretly and alone while he was in the hospital.

 

9 Women’s Bodies

ePub

Throughout history, ideas about the nature of women’s bodies have played a dramatic role in either challenging or reinforcing power relationships between women and men. As such, we can regard these ideas as political tools and can regard the struggle over these ideas as a political struggle.

Rose Weitz, The Politics of Women’s Bodies

Clashes over what women’s bodies should do and what they should look like continue. Despite strides forward in women’s rights on many fronts, bodies remain a persistent battleground. Some feminists even argue that as the feminist movement has grown, we are moving backward on issues related to women’s bodies, asserting that a backlash has developed that seeks to reinforce ever more policing and regulation, including increasingly restrictive ideas and actions determined to keep women’s bodies and women in “their place” (Faludi, 2006). Today this backlash takes many forms, “including 1) increasing pressure on women to control the shape of their bodies; 2) attempts to define premenstrual and post-menopausal women as ill, and; 3) the rise of the anti-abortion and ‘fetal rights’ movements” (Weitz, 2010, p. 9).

 

10 Lessons for the World

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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