My HIV status was occasionally commented on in interviews. One woman told me to be sure to use condoms and stay HIV-negative. Another, assuming that white people do not get HIV, asked me why this was the case. When I was in the clinic, however, it seemed that women sometimes tested me. For example, I was requested to share food, cups or lipstick while frequently being told in interviews about those who refused to share such things because they were afraid of HIV-positive people. Few people asked whether I was a mother or not. Interestingly, this became more prevalent towards the end of the research for some women who had conducted several interviews with me. One, for example, felt that I should not delay motherhood, because ‘it’s nice’, while another said I probably wanted to be a mother, but that it would be better for me to remain childless. The fact that I am a clinical psychologist was perhaps most commented on: participants often asked me for answers and a number of women described wanting to study further and being unable to afford to do so. One woman said she had wanted to be a social worker or psychologist like me, but had no money to do so. This was a comment on her lack of education compared to mine, but also on my affluence compared to hers. It was thus the difference of socioeconomic status that was most visible in interviews (but, of course, not in all interviews). For example, a number of women asked me to help them find employment. A few who were relatively economically secure took pains to describe how they had grown up in poverty. In a number of interviews, women described their poverty in ways that suggested that they thought I would be least able to understand this aspect of their lives. My whiteness, socioeconomic status and presence in the hospital frequently led to assumptions that I was a doctor, and the expectation that I would be helpful seemed to mitigate markers of difference. Further, many women made comments implying that they felt I could identify with them because I was a woman: it seemed that, in talking about HIV-positive motherhood, gender was more important than race.
The research setting, both within clinics and interviews, was a very specific context strongly influenced by the medical institution in which it was positioned, as well as, of course, by the ever-presence of HIV and motherhood that defined its very existence. It was a complex environment that allowed sharing and connection, but was also marked by remembrance and alienation – the clinic and the interviews reminded women of their HIV-positive status and were defined not only by the inclusion of acceptance, but by the alienation that separated HIV-positive mothers (who belonged in these clinics) from everybody else (who did not). It was an environment that allowed or disallowed different things for different women and to which a range of experiences, backgrounds and emotions were brought. While most women were black, they came from a variety of different places and spoke a number of different languages. While they were generally poor, the women’s socioeconomic environment varied. Some held culture and tradition to be important, while others considered themselves ‘modern’ urban women. Some women had conservative approaches to gender relations, while others felt themselves to be more liberal. Some lived their lives independently; others held deep and valued connections to their extended family, religion or other institutions. At the same time, the social environment held similarities for many women.
The remainder of this chapter focuses on introducing four of the women I interviewed. The different aspects of their stories are gathered together here to introduce the complexity of their situations. Many of the themes that arise in these stories are echoed across the narratives of the other women. These particular cases, which are abundant with disparities, serve to offer a sense of the wide-ranging experiences of HIV-positive mothers in the broader context of their lives, and to foreground for the reader, before some of the theoretical issues of motherhood are introduced, the realities of everyday life and the centrality of the women’s stories to this book.
Hlengiwe
Hlengiwe, eight months pregnant with her first child, was diagnosed HIV-positive two months previously. She is employed and, like many women with or without partners, lives with family members, in this case her cousins. On the day of the interview, she was wearing a short, bright sundress and was vibrantly attractive. She has been together with her boyfriend for the past three years, and has told him, but no-one else, of her status. She is not sure who brought HIV into the relationship. She describes her boyfriend as supportive, but she worries that he has continued drinking excessively. She worries about his health, but also suspects he is drinking in order to avoid talking to her: ‘to the person always drunk … maybe you cannot hear those things maybe she wants to say to you and all. I don’t know.’ When she told him of her status, she shared the concern of many women that he would leave her:
Mm, in terms of the HIV, I think he’s done better compared to other men, because if you tell them that you are HIV, they run away, but he didn’t. … But I said to him, ‘But the way you are acting, eh, for me, I do understand that it’s difficult, but you make me suspicious; I cannot rest. But I have to be prepared; I know I’m stronger. I have to be prepared and you know what, you’ll deal with this alone; maybe you’ll deal with it alone.’ Then he said, ‘no, I’ll never do that.’ But you never know.
She remains unconvinced that he will not leave her.
Like many others, Hlengiwe was brought up by grandparents – in this case both her paternal and maternal grandmothers. Her father has a wife and three children, including herself. She feels that her mother may blame her for the fact that she is not together with Hlengiwe’s father, and imagines her mother thinking, ‘my life is a mess because of [Hlengiwe]; if I was not pregnant [with Hlengiwe], maybe I would still be going out with her father’. Hlengiwe understands that her mother could not support her financially, but feels rejected by her:
I understand that she’s not working and there’s nothing maybe she can do for me, but as a mother, even if, according to me, you are not working doesn’t mean you have to shut your whole world. The love it’s there and the love makes another person grow. Somewhere, somehow I resent my mother; I don’t like her so much. Ja.
Her mother has not seen her since she became pregnant. She feels isolated from her family, alone both emotionally and financially and forced to rely on her boyfriend. For example, she explained that she started a tertiary qualification after she finished school, but did not complete the first year, because she was unable to pay her fees.
So [my family] know nothing about me, they just brought me, in our culture when you are 21, you have to see for yourself, but how can you see for yourself if you are not working, if you do not have an education? … How can I work a professional job, yet I’m not educated? You see, Carol, such things?
It should be noted that it is not necessarily culturally the case that adults are left to fend for themselves; it was expected that family members would look after one another, and more specifically that participants had obligations to financially support siblings and parents. Hlengiwe, however, felt she could rely on nobody.
This, combined with the powerful social stigma associated with HIV, prevented her from disclosing her status to others:
Yes, maybe they can blame you: ‘Ja, you, because you live alone, that’s why you are like this today. You hang around men.’ All these things because they don’t understand; they live where they live; their life, it’s fine, but if you start disclosing this information – because they take HIV/AIDS, I’m sorry to say that, a bitch or what, you know, such things, not knowing how did you get that, but because you are HIV, it means you have been sleeping around and sleeping, sleeping around.
Hlengiwe’s fears of being labelled echo statements made throughout interviews, but are specifically framed by her own story, particularly her independence and isolation from her family: ‘because you live alone.’
Just before Hlengiwe participated in the interview, she discovered at the clinic that the Nevirapine treatment offered does not guarantee that her baby will be negative. She was shocked, as she had presumed her baby would automatically be safe. She had also not been aware that she would have to wait a considerable period of time before she knew her baby’s test