I said, ‘[the doctor said,] do you know that if you, you are positive, you mustn’t kiss your child, mustn’t sleep with your child with you’. She said to me, ‘hau!’ Then I said, ‘the doctor said even if you give them food, you mustn’t taste anything’.
HIV transmission was a primary concern for many. The women I interviewed, including Pumla, were well informed about modes of transmission. Many kept newspaper clippings and voraciously watched television programmes in order to keep themselves informed. They understood that HIV can be transmitted during pregnancy and labour or through breast milk. Similarly, they knew that normal physical contact is perfectly safe. Many described the social prejudice that physical contact could be contagious. Pumla knew that kissing her baby or sharing food did not put her baby at risk, but doubted her knowledge in the face of medical opinion. It is unclear whether a doctor actually said this; and it is unlikely that the doctors at the treating hospital would have expressed this stigmatised view, but the doctor she described was at a local clinic. In a sense, it is immaterial whether this was actually said or not. For Pumla, this idea simultaneously expressed her anger at being stigmatised and her fears of infecting her baby.
She also described attempting to gain support from her church. Christianity was important to her, as to many participants, and so she spoke to the priest’s wife. Having experienced prejudice, she framed it carefully: ‘I didn’t say I’m positive to the lady. I say they think that I might be positive.’ In her view, her wariness was justified; she thought that the priest’s wife had betrayed her confidence:
Sunday, when I go to church, the priest was busy preaching about people who don’t respect their mothers and some of them they are HIV-positive; yes, you see, if you’re HIV-positive, you’ve done bad things to your body. God shows that you, you see [inaudible]. So this lady told him and that’s why he was preaching like that.
In a context where HIV awareness is visible on television, in newspapers, in schools and on billboards, the ostracism that circulates in the face of HIV is striking. Pumla described stigma in her social environment and also described how she cherished a television advertisement showing a white man who had lived with HIV for 19 years. Pumla felt particularly trapped by her status and described feeling self-anger and self-hatred for becoming HIV-positive. The contradiction that it wasn’t her fault, but that she was to blame, a contradiction shared by other women, was one that she was unable to resolve, and one that was echoed in the social environment.
Leleti
Leleti was diagnosed HIV-positive just before giving birth to her son. She attended a local clinic where no routine testing took place, but ‘luckily’, she says, her baby was in the breech position and she was sent to the clinic where my interview with her took place. She was unemployed and lived with her mother, with whom she had a close relationship. Her son, seven months old, was HIV-negative. Leleti conducted two interviews with me, deciding to participate on the suggestion of counsellors, because she was tearful and in mourning. Her boyfriend had recently died, probably of an AIDS-related illness. She had told him of her diagnosis when she was pregnant and he had been accepting and loving, had gone for a test himself, but had been too scared to return for the results. He had later become rapidly sicker within a week; his death had been unexpected. Since his death, his family had completely ostracised her and had left her financially destitute. She feels they may blame her for his death: ‘I don’t know, maybe they think I’m, I killed him, I don’t know. I don’t know what they are thinking, but it seems like, like it’s that.’
Leleti has not disclosed her status to anyone else. She is particularly reluctant to tell her mother, whom she feels is too old and fragile and may not cope with another loss: ‘I don’t know how it’s going to be [if I tell her,] because … she had her heart broken with my boyfriend.’ The implication in the interview was that Leleti knew about broken hearts. Leleti’s brother died many years previously from an unexplained illness and this loss was brought back to her when her boyfriend died: ‘it’s a double loss now, you know.’ She had also previously lost her first infant son, who had been sick since birth and would not get better. She did not explicitly say that this loss may have been AIDS related, almost as though it were too painful to voice, but she had clearly wondered whether it was. She thanked God, for example, for allowing her to save this new baby, and also said that if she had known her status with her first baby, ‘maybe he was going to be alive by now’.
Leleti’s HIV diagnosis, therefore, was not isolated in her body and mind, but was intimately connected with the AIDS-related deaths of others. In South Africa, where heterosexual contact is the primary mode of transmission and infection rates are high, HIV is not an exception and does not exist in the margins of society. Leleti’s contemplation of her own death took place in the context of having seen others die. This was common: almost everybody spoke about the experience of watching somebody – either a loved one or a neighbour – becoming sick and dying. Kuli and Nonyameko, for example, had lost babies to AIDS. Palesa’s brother had fullblown AIDS, but they were both too scared to tell one another their shared status. Amara bumped into her sister at an HIV clinic. Both pretended that they were not at an HIV clinic and that nothing had been disclosed. Neither spoke about it again. Joyce nursed her mother through an AIDS-related death a few years before being diagnosed herself. AIDS-related death is therefore powerfully present in the social domain, in everyday conversation and in observation. Its presence is, however, both explicitly known and explicitly hidden. People proudly wear HIV-positive t-shirts, but there are many funerals in which the cause of death is not stated. A counsellor joked to me about a funeral poster in the hospital that, like many others, was so silent about cause of death that it told everybody what was actually going on, and everybody understood.
Leleti felt herself caught in this social milieu of disclosure and silence. She was scared to disclose her status, but at the same time wanted to tell people about her status and about ‘the disease and all that … I feel like I can talk to people. Maybe I can be healed somewhere, somehow, you know, at least to live long.’ This desire was linked to her experience of encountering other HIV-positive women at the clinic. This often allowed comparisons that helped to disperse feelings of badness. Some women saw that others were healthy and felt they could be so too. Some saw others as moral women, some saw courage and others saw good mothers. Leleti, who was deeply religious, said that ‘I was not the only one who said that maybe God doesn’t love me, or all that. It’s just happened, you know, so I must accept it that I should live long or, you know.’
Leleti found strength in being known and seen as HIV-positive at the clinic. Her fear of being known and seen more publicly, however, was not only for herself. She was scared, like many women, that people would treat her son differently, even though he was HIV-negative. She felt that she could not ask her mother to care for her son after her death, because her mother was too old, or her sisters, because they had their own families. She worried about anybody else caring for her child, because of the implications if her status were known:
Because in our culture, sometimes they say if people are thinking about the baby, if they want the baby dead, they don’t want the baby, sometimes the baby can get sick and all that, you know those, uh, that stuff. But it’s true sometimes, you know. So I just want, I don’t want them near my baby.
Her fear, related to the cultural belief that malicious thoughts bring malicious consequences, was about her son being harmed because prejudice directed towards herself as HIV-positive would be carried over to him. She was thus caught between hoping that going public would heal her and fearing that the reactions of others would have harmful consequences for her baby. Leleti had experienced both loss and rejection – with very practical financial consequences – as a result of AIDS.
Nombeko
Nombeko is an unemployed single mother who was diagnosed