In 2002-3, when the accounts for the book ‘Long Life’ were being collected, the five women in question ranged in age between twenty-two and thirty-one years. Thandiswa summed up the similarities in their life experience: “[m]y story is similar to the other women in this book. Get pregnant young
, don’t finish school
, find out we are positive
, lucky to find work
, like that.”
] [p65]. They had all been diagnosed HIV-positive within the previous two years, two of them at routine antenatal visits and the others at the suggestion of medical professionals when their health deteriorated. The latter three were already on ART, the positive effects of which were described in miraculous terms [32
]. They were fortunate enough to obtain these life-giving drugs, not at that time available to the general population, at the Médicins sans Frontières (MSF) clinic in Khayelitsha. The book had a strong political rationale: to add the ‘voices’ of ordinary people to the campaign to force the state to ‘roll out’ universal access to ART in the public sector. None of these women had a history of activist involvement, but were recruited for the book initiative through attendance at MSF support groups. The women were thus drawn into a wider activist world involving organisations such as the Treatment Action Campaign (TAC), which were claiming entitlements to healthcare under the auspices of constitutional rights. At the conclusion of the book project they then received training through TAC to become ‘expert’ peer educators, and for a period of several years earned incomes doing HIV-related work. As a group they were thus well exposed to an international language of rights as pertaining to HIV that constituted the foundations of such organisations. Unfortunately, due to a variety of factors, the various pieces of HIV-related work ceased at different points in time for almost all the women. By the time of the follow-up interviews in 2008, only one of the women, Nonkosi, remained in full-time employment in a new but still HIV-related job.
Responding to a diagnosis of HIV
In their accounts in the book, the women reflected upon how they might have contracted HIV. Busisiwe recounted her relationship history in terms that emphasised a paucity of options. As a child in the rural Transkei she was shunted between the home of her stepfather and her grandmother, fending off the sexual advances of the former. When she entered high school she started seeing a boyfriend. Consequently her stepfather discontinued payment of her school fees. Her boyfriend gave her the money as he was working, and after a while she moved in with him. As her relationship with her stepfather had deteriorated, she felt she had no choice; there was nowhere else to go. This partner openly maintained concurrent sexual partners and thus they fought frequently. She finally left him and met her husband; by the age of twenty she was pregnant and then diagnosed with HIV. It is clear from her account that she assumed her husband to be negative at this time. She knew that her first boyfriend had become very thin and she linked his behaviour to her own infection. She had known of HIV but had not thought that there were people in South Africa with the condition.
Thokosizwe’s account focused heavily upon her abduction and rape by a group of men at the age of twenty. She was unsure as to whether she had contracted HIV from that encounter or from her most recent boyfriend. Nandipha remembered that she could not comprehend at the antenatal clinic how she could be HIV-positive, as she only had one boyfriend at a given time. The other women were also unmarried and linked their HIV infection back to a particular partner. In their assessments the predominant sense is of themselves as victims, let down by men to whom they had been faithful. Nonkosi alone reflected upon her own agency in contracting the virus. The man she suspected had passed on the virus was now very ill. She was unsure if he had infected her purposefully but felt she could not blame him, as she had not used a condom.
What is striking in these accounts in the book is the difficulty that these women experienced with disclosure upon learning of their status. Nandipha did not tell the father of her unborn child as she was concerned that he would leave her, even though she believed he ‘gave’ her the virus. Thokosizwe’s partner seemed to respond supportively to her news and agreed to go for testing himself; but she did not hear from him again and only saw him once more, when he was dying of AIDS in hospital. Busisiwe approached the issue by suggesting that both she and her husband should go for testing. He refused outright and warned her not to tell him her result if she tested, as he could not sleep with her if he knew she was positive. She remained silent and torn by her dilemma: he refused condoms and she felt she could not insist without disclosing; yet she risked giving him the virus. Nonkosi recounted that she had told a man who was showing interest in her of her status and that was the last she saw of him. Thandiswa was also single and joked that she told men of her status to get rid of them when they were giving her unwanted attention. However she commented wryly that it would not be amusing if she actually liked someone. In a discussion reported in the book, the women reflected upon the fact that men seemed unwilling to test but preferred to blame their female partners. They were sympathetic towards Busisiwe’s choice of silence, as the consequences of disclosure could be significant: abandonment, loss of financial support and indeed the very real risk of violence. They were also afraid of the stigma of becoming known as HIV-positive. Nandipha recounted that when she shared with a clinic counsellor her anxiety that her newborn might be positive, she was accused of causing the predicament by ‘playing with her body’. Thokosizwe noted that she heard people pointing and commenting that a woman with HIV must have been behaving ‘like a prostitute’. Indeed, she passed this judgement on her own mother who had died of AIDS, describing her as a woman who did not behave ‘responsibly’, who was too fond of men and liquor.
The difficulties with negotiating disclosure in sexual relationships
In the follow-up interviews conducted in 2008, the fears of discrimination and the difficulties in negotiating disclosure and sustaining intimate sexual relationships remained substantial themes. The most tragic account was that of Nandipha. When she needed antiretrovirals she had struggled to get access to them in the newly initiated government programme, fighting to regain her health and maintain her employment as a peer educator. She married but the relationship was conflictual. He was a drug dealer and when she was found brutally murdered, the other women were convinced that he had killed her.
Busisiwe had separated from her husband but returned to him when he contracted TB. At this point she finally disclosed that she had HIV and encouraged him to go to the clinic, as she explained in the interview: “So, when I came back to stay with him again, I decide now that he is positive, I mean being sick; if he is positive he must not blame anything, but he must know that it has long ago been here in our home...”. As it turned out, the reconciliation was sustained despite her revelation. Nonetheless, she had to live with the knowledge that she had felt powerless to prevent what she had feared.
Thokosizwe reported that she had not been in a sexual relationship since being left by her partner at the time of her diagnosis. She explained in the interview that she was a born again Christian and her church did not condone dating, only marriage. She was looking for an HIV-positive husband, someone she felt would be more likely to understand her situation. However, as she put it, “I never experience a perfect relationship or a successful relationship. I used to have downfalls”. She also spoke movingly of the insecurity she felt living alone in an area prone to violence, a fear she believed to be exacerbated by her experience years before of being raped.
Both Thandiswa and Nonkosi spoke at length of wanting to initiate and sustain relationships with men but struggling to know how to handle the matter of their positive status. The difficulties manifested at several levels: negotiating safe sex prior to disclosure; knowing at what point to disclose; knowing how to do it. Thandiswa remarked poignantly of relationships that “I take them as if they are not serious things”, citing the difficulties with disclosure: “I made a mistake of disclosing to two partners. Yes, the difficulty is where I am going to start, what I am going to say. What is hard about this, is when do I disclose…”. In the case of one of the partners referred to she was staying with the man and he watched her taking medication. They were using a condom, but she felt he was waiting for her to tell him. She did so when they were watching a television programme on HIV. In both instances the men professed not to have a problem with her status, but then ended the relationships because of “outside influences”. Perhaps, she reflected, they only “pretended” to understand. As a result she had changed her strategy, as she explained: “I don’t disclose to everyone; I don’t talk I just offer a condom”. However, even disclosing by means of a condom had not proved successful, as men did not like to use them, favouring nyamanyama (isiXhosa for ‘flesh to flesh’). She concluded: “…but even there he is walking away because I have offered him a condom…I have not yet got someone who says he is staying”.
When she was first diagnosed with HIV, Nonkosi had not been in a sexual relationship for some time, and she reflected upon how the physical manifestations of her immuno-compromised state had severely affected her self-esteem. ART had restored her health and a sustained income in HIV-related work meant that in 2008 she was economically independent and felt she had gained considerable confidence. She was proud of herself for ending an abusive relationship but was struggling to find another partner. She reflected: “I thought my relationship was going to be easy because my partner is also HIV-positive…Now that I am a single woman, single mother I am looking again for a partner, and disclosure is my challenge. I know it has been hard for the other women because they have been rejected by men because of their status and I call that discrimination…”. These women, from the original group involved in the book project, had told her that men simply ‘disappeared’. They had subsequently decided that they were no longer going to disclose, but just use a condom, much like Thandiswa.
Nonkosi, however, was not completely at ease with this strategy, as she described: “I usually asked them, what if the person finds out, then what? Then they [the other women] will say that the person will probably be so in love with you and it will be hard for them to break up, so that is how they were defending themselves. So I was saying that, no it’s wrong, you must not do that. I mean it’s not fair on the other person”. Her concern lay partly in the fact that men in these circumstances seldom wanted to use a condom. She continued that the other women would still justify their decision not to disclose: “They will say that it is their [the men’s] own responsibility, why should I be responsible for them. If they are not responsible it is their problem”. In addition these women added that it was also the men’s responsibility to test, suggesting that the women suspect that some men just do not want to know that they also are positive. Nonkosi went on to describe two of her recent attempts at disclosure in new relationships. In the first instance, the man professed that she was his ideal partner but that he was ready to start a family. He felt that her HIV status made it impossible for him to do so and thus to continue in the relationship. In the second instance, the man concerned said that he was too afraid of becoming infected. She noted that these men did not suggest testing themselves, being either too scared or reassured by their apparent good health. The challenge, as she put it, was to pick herself up, move on and still disclose again the next time. She was the only one of the women still involved in HIV-related work and she knew well the prevailing advice encouraging disclosure and use of a condom. Her debate about the arguments used by the other HIV positive women to justify the solutions that they were working out, reveals the complex process of negotiating understandings regarding who is responsible for protecting against infection in intimate encounters.
The challenges of bearing a child
The women in this study largely shared the sentiments of a prevailing social discourse that values motherhood very highly for African women. When these women originally documented their experiences in the book ‘Long Life’, they displayed a considerable focus on the position of children, for example by advocating for ART on the grounds of ‘the rights of children to grow up with mothers’, and for PMTCT programmes based on ‘the rights of the child to be born negative’. In the follow-up interviews, the comments about childbearing reveal the complexity of the livelihood challenges facing these women, some related to being HIV positive, others held in common with women living in circumstances of economic fragility. The difficulties faced in providing for a child featured prominently.
Thandiswa had an unplanned pregnancy as an adolescent and at times had relied heavily on her mother to care for her daughter. During the period when she had a full-time AIDS-related income, she had turned this situation around. However in 2008 she only had part-time work and confessed in her written narrative: “About the hope of educating my child, I have fear that I will not be able to because of money…”. In 2003 Thokosizwe had written that she would not consider having a child because she was HIV-positive. However, in 2008 her position had shifted: she said that she would like a child if she could find a husband. Yet she was unemployed and in quite desperate poverty and her personal survival under these circumstances and in a crime-ridden neighbourhood appeared to be foremost in her mind.
Busisiwe and her husband only had one child, a son, whom she photographed in 2008, writing: “[h]e is very important in my life because I got him while living with this HIV”. She revelled in the fact that he had not contracted her HIV. Yet she also photographed her own abdomen, pregnant now for the second time, with the annotation: “After a hard road I made a mistake of getting pregnant...I have a fear of getting sick and I am always thinking about this coming baby”. In the interview she expressed her feeling that this recently conceived child was “bad luck”, explaining that she did not want another child when she was unemployed. Moreover, in addition to concerns about finding money to support the children, she reiterated her fear of becoming ill: “I pray that the cure would be found by the time I get sick, so that I can raise my children”. Busisiwe had been a close friend of Nandipha and reflected upon the precarious position of the latter’s two children since her death. In addition, the father of the second child had died of AIDS.
Nonkosi was the only woman who had actively sought to have a child since her diagnosis. She was delighted with her son and that he was negative “because of ARVs”. What is noteworthy about her experience is the motivating role played by information and support from a doctor with whom she had a longstanding therapeutic relationship. She explained: “I did not make the decision on my own at all, I wanted a child but he made me decide”. He enquired if she desired a child and then confirmed that her biological markers were such as to make it safe. As mentioned before, she had been rejected by a man who believed he was negative and thus could not have a family with her. She then ended up with a partner who was also HIV-positive but insisted that this had not been the deciding factor for her in trying to conceive at that time. She was also aware that sex with him held health risks of reinfection but she decided to go ahead with a pregnancy despite the concerns: “I wouldn’t put that I wanted to have a child just because he is HIV-positive, because there was also a risk of me having an unprotected sex [with him]. I just said OK, let me just do it”.
From rights activism to regimes of responsibility
In 2002-3 these five women were involved in AIDS activism for the ‘right to health’. The right to HIV treatment was granted and the women went on to do AIDS-related work. By 2008 this was only the case for Nonkosi. The loss of this income had affected the other women’s general wellbeing significantly. In addition, they had lost their entitlement to state disability grants in an exercise of rationalisation of benefits, in particular for chronic illness. There was a strong sense that they had returned to facing the same struggles of poverty and unemployment that they recognised from prior to their HIV diagnosis, a predicament shared with many other women living in low-income areas in Cape Town. At the same time ART had restored their physical health, making their illness less visible. As Thandiswa commented: “...now I know it’s still present but I didn’t see myself as having it”. The availability of treatment had reduced having HIV to a more private, individualised experience. None of the women attended support groups any longer; they were “living their own lives, with their own HIV”, as Nonkosi put it. However, she acknowledged that the appearance of being like other people was only possible if one maintained strict adherence to a drug regimen, a paradox she captured as follows: “[s]ometimes I forget that I have HIV anyway, I am just taking this medication”. The women expressed a strong sense of personal responsibility to remember the pills, to live healthily, to attend appointments and collect medication.
The interviews indicate that they were now inclined to interpret their bodily states in terms of biological markers, so central to managing HIV as a chronic illness. Indeed it was these markers that enabled clinic staff to check if they were conforming. The descriptions of interactions in the clinic indicate a concern not to end up in a situation of being “punished” for non-adherence, by having to endure more frequent appointments and home visits. In addition, the women emphasised a personal commitment to heeding the warnings of health professionals not to end up on second-line therapy, or contract drug-resistant infections. As the language of rights was so central to the book, the language of personal responsibility had become prominent in their lives. Behaving responsibly was seen by them as key to staying well, and their memories of illness easily summoned a motivating fear. Busisiwe acknowledged that there were still HIV-positive people who became very ill, yet added: “[b]ut I also think that people who are like that are people who choose to be like that…because people mix alcohol and ARVs or a person forgets to take them or spits them when they are sick…”. Thus the women could also judge those not conforming to the rules of the regime, as much as they were still defining for themselves where the boundaries of personal responsibility lay in their own private lives.