Anthropology & Medicine Vol. 14, No. 1, April 2007, pp. 55–68
Living Positively: Narrative Strategies of Women Living with HIV in Cape Town, South Africa Jennifer M. Levy and Katerini T. Storeng
Therapeutic interventions to address HIV in Africa mean that individuals are increasingly diagnosed with HIV prior to severe health crisis. This paper contributes to the anthropological literature on living with HIV by focusing on the creation and use of narrative and practical strategies for addressing HIV in a setting where such experiences have to date received little attention. Specifically, focus is on the discursive strategy of ‘living positively’, a forceful and much propagated orientation to life following an HIV diagnosis. In this paper the authors examine how this strategy is embraced not only by individuals living with HIV, but also by activists, HIV support organizations and public health agencies. The paper is based on fieldwork in and around Cape Town, South Africa in 2002 and draws on open-ended interviews with 12 women living with HIV and observations from support groups, activist events and public health meetings. The research indicates that the living positively dictum is imbued with a multiplicity of meanings and that it is used in diverse ways. For women living with HIV the practical and philosophical elements of positive living have social and political force in transforming personal and social attitudes about HIV, especially about HIV testing and treatment access. At the same time, however, the dictum poorly addresses the structural constraints of living with HIV and places the responsibility for positive living squarely on the individual. Despite this, the political context that prevailed in Cape Town at the time of the research created a particularly fertile juncture for embracing the living positively philosophy.
Introduction ‘Living positively’ has become a maxim for people around the world living with HIV. The idea of ‘positive living’ is also used to address other illnesses and disabilities, but it is advocated with particular force for people living with HIV. Living positively Correspondence to: Jennifer M. Levy, Department of Anthropology, McMaster University, 1280 Main Street West, Hamilton, Ontario L8S 4L9, Canada. Tel.: 1-416-628-9882; Fax: 1-905-522-5993; Email: levyjm@ mcmaster.ca ISSN 1364–8470 (print)/ISSN 1469–2910 (online) ß 2007 Taylor & Francis DOI: 10.1080/13648470601106343
56
J. M. Levy and K. T. Storeng
involves adopting a particular narrative account of life with HIV, which aims to transform the devastation brought to life by an HIV diagnosis into a coherent story. This kind of narrative is not merely creative story making, but rather seeks to accommodate new realities within pre-existing expectations for the life course and focuses on the ability, through modified behaviours and attitudes labelled ‘positive living advice’, to enhance self-fulfilment in the face of the adversity accompanying diagnosis with a life-threatening illness. In the absence of access to adequate medical care and antiretroviral therapy, adhering to positive living advice emerges as one of the only possible avenues for individuals to affect the course of HIV. The assumption is that nutritious diet, adequate sleep, exercise, stress reduction, preventive behaviours—for instance the use of condoms to prevent HIV re-infection—and appropriate health-care seeking will improve immune functioning and delay the onset of opportunistic infections and AIDS. The capacity to engage in these behaviours are purported within the positive living discourse to be facilitated by individuals’ open and accepting attitude towards HIV, demonstrated through disclosure of one’s status to friends and family and participation in support groups where positive living ideals are communicated and psycho-social support is gained. The behavioural and philosophical elements of living positively aim to challenge, on the one hand, the image of the culpable AIDS sufferer and, on the other hand, the assumption that an HIV diagnosis leads to an inevitably rapid demise. In this paper we explore the meaning of living positively for HIV-positive women in Cape Town, in South Africa’s Western Cape Province in 2002. The strength of this strategy must be seen in the context of the dynamic political, activist, policy and prevention environment around HIV and AIDS that existed in the Western Cape Province. In 2002, the Western Cape Province was among the first places in subSaharan Africa to be able to boast near universal public provision of prevention of mother-to-child transmission (PMTCT) services. At the same time, the Treatment Action Campaign (TAC), a prominent AIDS activist group, was completing successful court action against the national Department of Health over the constitutional right to access nevirapine, an anti-retroviral medication, which was to be the bedrock of universal expansion of the PMTCT programme. The TAC drew much of its legal clout and inspirational force from the Western Cape, where the Provincial Department of Health had defied national level policy and implemented PMTCT services and explicitly supported the TAC’s claims in court. At this time, the Western Cape had the lowest HIV prevalence of any South African province, although some townships, like Khayelitsha, report antenatal prevalence rates approaching 23 per cent (Coetzee et al. 2005). Taken together, these events had created a sense of optimism about combating the HIV epidemic in the Western Cape and gave strength to the positive living discourse. In this paper, living positively is explored as a dynamic strategy co-created and transmitted in the public realm by activist organizations, support groups, and public health agencies with the leadership and involvement of their HIV positive constituencies. Our research indicates that living positively was embraced not only by women, activists and support groups, but even by the health authorities, because
Anthropology & Medicine
57
of the promise it held for women’s participation in broader movements for social change and the management of HIV. In focusing on the accounts of HIV-positive women living in and around Cape Town, we argue that for these women, the positive living dictum provided practical tools for rebuilding the self following an HIV diagnosis. Furthermore, the dictum provided guidelines for pragmatically overcoming some of the structural constraints of daily life with an HIV infection, particularly those relating to health-care access. The discourse of living positively, however, ignores some of the real structural, physical and financial constraints that women encountered in following its directives, and placed the responsibility for action directly on the individual and thereby articulated morally correct ways of being HIV positive. Methods The primary data contained in this paper are derived from anthropological fieldwork in Cape Town and the surrounding townships during June and July 2002. During the study we conducted formal, semi-structured, tape-recorded interviews; informal, semi-structured interviews; and engaged in participant observation. Interviews were developed thematically; when new themes emerged they were followed up with additional questions and incorporated into future interviews (see the Appendix for the thematic interview guide used with women living with HIV). Written or verbal informed consent was obtained from all participants. Individuals were recruited into the study through: (1) networks developed through AIDS Service Organizations (ASOs); (2) presentations at support group meetings; and (3) referrals by other study participants. In total, we spoke with 12 women living with HIV, including seven HIV-infected women who were also lay counsellors or mentors. The majority of these women lived in the townships surrounding Cape Town, and a majority had recently been through a prevention of mother-to-child transmission programme and given birth. In addition, we interviewed 11 lay or professional HIV counsellors; 12 public health researchers, policy makers, and people involved in ASOs; and two health-care providers. In many cases, the formal interviews were one component in on-going discussions that occurred over the course of the fieldwork at many sites as we attended support group meetings, conferences and policy meetings. Media and promotional materials produced by activist organizations and educational programmes in and around Cape Town also inform our understanding of the living positive dictum.
Narrative Strategy The proliferation of theoretical discussions about narrative within anthropology is not accompanied by any consensus regarding what narrative is or about narrative’s relationship to experience. Narrative can be understood as a fundamental process in the creation of self in that it is a primary mode of cognitive functioning and worldmaking (Bruner 1987; Ochs & Capps 1996). Becker (1997) describes how narrative contributes to meeting the universal, but culturally specific, human need for
58
J. M. Levy and K. T. Storeng
continuity through life (see also Becker 1994; Good 1994; Frank 1995). For a sense of continuity to be achieved, the life story must be re-structured in light of new circumstances and possibilities brought by illness, because illness happens in a life that already has a story. Maintaining a connection between the past, the present, and the future is an exercise in what psychoanalyst Donald Spence calls ‘narrative truth’ (Frank 1995). This is the process of emplotment, the creation of a story out of disparate elements and events (Becker 1997). As more than a mere recitation of what has been, narratives are seen as a form of action in the world, which work to create a life (Mattingly 1998). Narratives are not, however, solely individual phenomena. As Peacock & Holland (1993) illustrate, narratives are additionally important in the ‘formation and maintenance of social relationships and collective identity’ (p. 372). As a product of interaction between narrators and interlocutors, narratives are an outcome of cultural and collective dynamics. Thus, we understand narrative as the socially and culturally mediated way in which individuals come to understand their experiences in the world and share these with others. Several anthropologists have argued that narratives express the effect of illness, corporeal violence, social relations and political and economic structures on the body (Scheper-Hughes & Lock 1987; Csordas 1994). While expressing these structures, narratives may also resist dominant structures by challenging prevailing and inadequate cultural themes and enacting new ones (Hunt 2000; Migliore 2001). One site where dominant themes are challenged is in self-help groups (Janzen 1982). Such groups often have their own powerful alternative narratives that contradict prevailing constructions of specific illnesses and create new illness perceptions and practices (Cain 1991; Steffen 1997). Groups may create narratives in opposition to cultural norms; the group norms themselves may be equally powerful and may even oppress individuals’ alternative interpretations and story telling. For example, in construction of illness as quest (Frank 1995), common in autobiographies and self-help groups, story-tellers appear as moral agents who speak of the ability to transcend illness. The danger of such stories is their authority in constructing illness as transformation and growth, while often denying the embodied pain, suffering and degeneration that often characterize illness. This kind of story telling, which finds its manifestations in support groups and self-help literature, is described by Crossley (1999) as ‘just another of Foucault’s ‘‘technologies of the self’’’, because people are encouraged to seek out ‘positive’ and ‘good’ elements of their emotional, psychological and physical selves. One of the problems associated with such narratives is that they can become the ‘morally correct’ way of being ill.
Living Positively as a Narrative Strategy For individuals living with HIV, positive living represents a narrative strategy for creating coherence in a life story that has been disrupted because diagnosis challenges the taken-for-granted conceptions of self (Good 1994). An HIV diagnosis—in
Anthropology & Medicine
59
contrast with an AIDS diagnosis—is particular because it does not necessarily imply ill-health, but rather indicates that the onset of life-threatening disease is relatively imminent and inevitable without medication. Despite possible good health, the impact of an HIV diagnosis creates what Pierret (2000) has called a ‘watershed’ separating ‘before’ and ‘after’. One 35-year-old mother of three who had been diagnosed during her most recent pregnancy described her experience, The nurse said ‘you are positive’. No, I couldn’t even question her or ask her anything because my tears were just rolling. The first thing that went through my mind was my baby inside. Is he going to have it? And what am I going to say to my other kids, because they are still young? And now they are going to hear that I am positive and they are going to think that I am going to die now. What am I going to tell my family now? Are they going to accept me or what?
Whether presenting for voluntary counselling and testing (VCT) on its own or as part of the PMTCT programme, women who received HIV diagnoses were delivered a deliberately articulated discourse on positive living, comprising not only preventive health and nutrition advice aimed at slowing the onset of symptoms or decreasing the risk of vertical transmission from HIV-positive pregnant women to their foetus or baby, but also advice on how to cope with the diagnosis. Emphasis was placed on the importance of disclosure and the support of male partners and other family members. Support groups were an integral part of VCT services, which aimed to reinforce the positive living advice offered in individual counselling sessions. Living positively was effective not only because illness causes discontinuity in the embodied experience, but also because the strategy challenged the negative social constructions of the disease. HIV has become a polysemic concept, implying not just a gradual deterioration of the immune response. It has taken on a large number of meanings related to sexuality, race and class, leading Treichler (1988) to refer to AIDS as ‘an epidemic of signification’. Never benign, social constructions of disease have embedded within them moral judgements on right and wrong, good and bad, and responsibility and danger. To a large extent, social constructions of AIDS have drawn on scientific and public health classifications of ‘risk groups’ and ‘risk behaviours’. Infection with HIV is associated with misbehaving and promiscuity and other forms of demarcated ‘risky’ behaviour. In this view, AIDS is caused by a moral failure of the individual (Brandt & Rozin 1997). Schoepf (2001) argues that once placed in a risk category, individuals are separated from other sources of identity, and are, by definition, stigmatized and degraded. As one lay counsellor involved in delivering VCT explained, ‘When you tell someone that you are HIV positive they think about unsafe sex and sleeping around. People don’t want to be associated with people like that. It’s linked to morality.’ The construction of HIV as a disease that affects socially deviant groups has facilitated distancing and denial of personal risk by people who do not consider themselves to be members of these groups (Schiller et al. 1994). The HIV-positive women in our study described, retrospectively, that they had felt little personal vulnerability prior to diagnosis because HIV was something that happened to others. One woman explained, ‘Before I found out, HIV didn’t worry me because I wasn’t expecting me to have it. I didn’t know anybody who had HIV.
60
J. M. Levy and K. T. Storeng
I wasn’t interested in that. I never watched the news about it because I thought I didn’t have it. Why must I worry?’ Some self-ascribed ‘coloured’ informants relayed not feeling vulnerable because HIV is a ‘black disease’. Women dissociated themselves from the ‘ignorance’ and ‘promiscuity’ that places ‘other’ individuals at risk. One 26-year-old HIV-positive mother explained, ‘I don’t want to tell lies. I thought if a woman doesn’t like herself and sleeps anywhere she wants to sleep, then she’s got this virus. I didn’t know you could have the virus without sleeping around. I thought it was for the people who don’t care about themselves.’ The mass-scale testing of women in the context of the PMTCT programme contributed to dramatically changing the public face of HIV and AIDS in Cape Town. Prior to the PMTCT programme there had been no real incentives for individuals to be tested, since treatment was either unavailable or unaffordable. Despite the bleak prospects for infected individuals, activist groups such as the TAC and various support groups actively propagated reconstructions of prevailing attitudes and stereotypes of HIV, relying on testimonials of HIV-infected individuals looking healthy and living fulfilling lives to contradict the stereotypes associated with HIV and AIDS. With PMTCT the public face of HIV was transposed beyond exclusive activist circles to maternity clinics and neighbourhoods and came to be represented by the image of a seemingly healthy HIV-positive mother and her HIVnegative baby, de-stabilizing entrenched understandings of vulnerability to HIV. This normalization strategy relied not only on denying stereotypes, but also involved challenging visual representations of HIV and AIDS sufferers as emaciated, sick and dying. For HIV-positive women, showing a healthy face was intended not only to restore their individual sense of identity, but also to challenge societal impressions of what it means to be HIV positive. It was by dispelling their original assumptions about HIV and AIDS that women were able to reconstruct themselves as HIV-positive women who could, nevertheless, live positively. The living positively dictum is thus one attempt to overcome the disjuncture between how HIV-positive individuals view their pre-diagnosis selves and how they view ‘others’ affected by HIV. Women themselves insisted that increased knowledge amassed through participation in support groups and activist groups had placed them in a position to help not only themselves, but also other women in similar situations. They repeatedly emphasized the importance of disclosing their HIV infection in part to show that, contrary to their own expectations, individuals who look healthy and happy can also be HIV infected. One HIV-positive mentor relayed the experience of a first-time visitor to her support group, One patient told me, she was crying, she was expecting to see sick people, dying people, ugly people, ‘and when I see all these beautiful people, I can also look like this’. And I said ‘yes you can look beautiful. You can even look sexier than me’. When they come here they expect us to be sick and when they see us they take courage.
Living positively thus aims to challenge the expectation that HIV necessarily leads to rapid death, an assumption that contributes to fear and stigmatization. The women generally admitted to holding such conceptions before ‘becoming educated’
Anthropology & Medicine
61
about HIV. One woman said, ‘I didn’t have any information about HIV. I just knew that I was going to die and I knew that my daughter was also going to die very soon.’ She conveyed how her mother wanted to take her and her daughter back to the Eastern Cape when she found out about her and her daughter’s diagnosis: ‘She thought we would die soon so she didn’t want us to die here and spend the money to take us back.’ The expectation that being HIV positive meant that death was imminent was widespread and was perceived as a major impediment to coping by HIV-infected women. Denying that an HIV diagnosis inevitably leads to rapid death relies on the same kind of strategy as the revised narratives of risk mentioned above, which normalize the diagnosis by drawing on the uncertainty of all life: It’s like accepting the fact that one doesn’t know when she or he is going to die. And if you die it’s the time for you to die. Because I can have HIV and live for ten years and you cannot, but you can leave on the road with this car and have an accident and you can die.
Living Positively—An Imperfect Strategy Despite their general commitment to the living positively narrative strategy, women were not always able to adhere to its insistence on a positive outlook and prescribed lifestyle. This was because the highly rational and individualistic behaviour implied by the model is not always a possibility in real life. Schoepf (2001) argues that the currently dominant biomedical model of health, which incorporates capitalist assumptions about health resulting from individually chosen lifestyles, neglects how behaviours are related to social conditions and the manners in which communities shape the lives of their members. Like similar psychologized models of health behaviour (see Auerbach et al. 1994), the positive living dictum implicitly assumes that individuals carry out some sort of cost–benefit calculation in order to maximize their gains from various health-related behaviours, without taking into account the structural and social constraints that operate to shape these behaviours. The women supported the openness rhetoric of disclosure, but in practice, disclosure—even to sexual partners—was far from universal. The reluctance to disclose was based on the real risk of social exclusion that could accompany the act of disclosure—several of the women described being ‘abandoned’ by their male partner after receiving an HIV diagnosis, and one expressed regret, saying that she no longer expected ‘to get married and do the normal things in life’ because she had been open about her HIV diagnosis. In many cases, women were economically dependent on men for their own and their children’s survival, and disclosure, if it led to rejection, could push them into destitution. Several HIV-positive lay counsellors admitted that they were hiding their own diagnoses out of fear that they would be rejected, even though they encouraged women that they encountered through their work to disclose to their partners. That women embrace the benefit of disclosure before they have actually disclosed their own diagnosis demonstrates that women learn what it means to live positively and develop strategies on how to do so through their own and others’ narratives of positive living (Cain 1991).
62
J. M. Levy and K. T. Storeng
Maintaining the positive outlook promoted by the positive living dictum was challenged by the reality of having received a life-threatening diagnosis, and especially by having few resources with which to follow the lifestyle directives of the strategy. Good nutrition is often heralded as one effective way of preserving adequate immune functioning, yet women explained how they struggled to eat healthily because they could not afford to buy the required fruits, vegetables and protein. In the townships where the women lived, an HIV diagnosis exacerbated pre-existing concerns about daily survival in the face of rampant unemployment, poverty and limited access to health care. Receiving an HIV diagnosis rendered the women’s already precarious work lives even more uncertain; both because HIV-positive individuals were often discriminated against in the workforce and because being diagnosed made it difficult to find motivation to continue working. One woman, who became a mentor for HIV-positive pregnant women following her own diagnosis during pregnancy, described some women’s inability to cope with diagnosis, ‘Some of the women give up, you know, they think that it is the end of their life, so they don’t get jobs anymore’. Negotiating work demands was perhaps particularly difficult for those women who were symptomatic or who had sick children, as one counsellor and home-based carer, explained, Most of the time the babies are sick, they are sickly. And then if the mother is employed the employer will get angry, ‘I need somebody who is going to be here everyday, not somebody who will come twice or three times a week. So it means now you should stop working, go and look after your baby. I’ll get somebody else’. Now there is no income at all. So, the mother has to see how she is going to feed the baby because she cannot get work. She has got to look after the baby, she’s got to feed the baby, and she’s got to feed the other children that she’s got.
Additionally, geography, poverty, stigma, denial, old age and sickness create further barriers to women’s ability to access support services and follow the advice advocated in the positive living dictum. Daily life, even for those who were living positively, was precarious. Loss of a job, illness, change in family or living situation, could easily tip the balance away from positive living. Despite these difficulties, the transformation of the self through the kinds of regulatory practices espoused by the living positively dictum was one of very few recourses open to women in Cape Town, who lacked access to medications or individualized treatment and support.
Living Positively and the Broader Mobilization of Political Claims Support groups and activist groups represent the site of communication and empowerment in the living positively dictum, and in Cape Town these arenas also became the base for wider social change. Support groups provided women with the opportunity to meet people who were in the same position, forming groups of what Alonzo & Reynolds (1995) describe as ‘a community of ‘‘own’’’. In this new ‘community’, women discovered that despite the adversity they were experiencing, they were able to provide other newly diagnosed women with valuable support and newfound expertise. This made the women, as de Jager & Kirk (1998) elaborate, more
Anthropology & Medicine
63
inclined to see themselves as individuals with strengths and resources than as victims. An HIV-positive lay counsellor described the strength she was able to give to other women, I always tell people that it is never the end of the world to be HIV positive and that they must never give up. It doesn’t mean you just have to sit around and wait for your day to come. Because your day might never come while you are waiting for it. Maybe it can come after twenty years and you would have done so much. So just carry on and live your life to the fullest. I am strong and they draw some strength from me. It also gives me strength knowing that other people draw some strength from me.
Within support groups, HIV-positive women challenged prevailing notions about what it means to be HIV positive, but these women also saw their role as extending into their home communities. All of the women emphasized the importance of openness about HIV as a prerequisite to dispelling negative stereotypes about people living with HIV. Those who had disclosed their diagnosis to family members, partners, friends or neighbours described themselves as community agents for change by publicly opposing the silence surrounding HIV, by educating others and thereby contributing to the dissemination of positive messages about HIV testing. One woman described her hope, ‘I wish my family can understand and carry the message. So that the information I give can also be passed to someone else and from someone else they can also send the message to other people and make them understand.’ A common theme emerging from discussions with women, activist, counsellors, public health practitioners and policy-makers was that the women’s experiences and life stories could be deployed to change attitudes and practices relating to HIV. They could be used to show that ‘normal’ women and mothers can be infected by HIV, and that this will affect both prevention efforts and societal reactions to those affected. An HIV-positive mother and AIDS activist described this transition: Because now I believe that by hating HIV positive people you are stigmatizing yourself. You are the first person who stigmatizes yourself. But by sharing your experience with other people it means that there is nothing wrong with you. Anyone can be HIV positive. Speaking out, it means that the stigma is going away.
Another HIV-positive woman was presented with the opportunity to become a mentor for women going through the PMTCT programme. As part of the dissemination of an innovative approach relying on unskilled HIV-positive mothers as mentors, this woman and three of her fellow mentors were sent to the 2002 International AIDS conference in Barcelona to describe their involvement in the programme. Right before departing for Spain, this woman decided to disclose her HIV-positive status to her family and neighbours. When she returned one week later, her situation had been transformed as she and the other mentors had been featured in local media. She described her experience of disclosing to members of her community, So I went to them and we sat and chatted and I said ‘Do you know I am HIV positive? You know that conference in Barcelona? I’m going to that conference’. Just like that.
64
J. M. Levy and K. T. Storeng Then they sit and they think ‘Maybe if you have it maybe I have it also’. ‘You didn’t move around. Maybe I should also go for testing.’
Being asked to represent HIV-positive mothers who had used their illness to espouse social change and offer support, this woman had effectively been given legitimacy as an expert in her local community. Her strategy of education was based on dispelling the impression that some women are exempt from risk, by showing that ‘normal’, non-promiscuous mothers such as her could be affected. The potential of HIV-positive women to affect broader social change was recognized and capitalized upon by the Western Cape Province’s Department of Health. The power of mobilizing women relied very much on the fact that these women were mother figures who, despite being infected with HIV, showed few or any signs of disease. One Department of Health policy-maker explained that prior to the PMTCT programme, ‘We didn’t really have a pool of well HIV positive people that we knew about.’ Being able to identify patients who have not yet become sick opened up possibilities for spreading messages about positive living, including the importance of HIV testing: We are able to give them a whole lot of information about positive living, about healthy diets and exercise and all those kinds of things, teaching her to recognise opportunistic infections early so that she can come to the clinic to be treated. Then of course as that individual knows her positivity, we encourage her to speak to her partner, which then brings another person to be tested. And then the whole family becomes affected by the infected couple and therefore a whole wider kind of educational thing of grandparents and siblings and so on.
The emphasis on positive living, this policy-maker explained, indicated a shift from ineffective prevention programmes that were intended to prevent a predominantly HIV-negative population from becoming positive to VCT and PMTCT, a ‘golden opportunity of captive audience of well women who have come and been given this opportunity. And in being negative, have also been educated about keeping negative and what their risks might or might not be.’ The impression was that these largely asymptomatic HIV-positive mothers constituted a ‘critical mass’ that could be instrumental in creating social change towards increasing the acceptance of HIV testing, mobilizing demands for treatments and other public health action and eventually promoting acceptance and inclusion of HIV-affected individuals. Positive living was one of few directives offered by the public health authorities to individuals who have been diagnosed with HIV, and it is not surprising that the state’s obligation to provide the conditions to enable such positive living took on political significance. The discursive link between poverty and disease was politically compelling in this setting, and obvious to HIV-positive women. One woman shared her observation: ‘What I have noticed is if people are impoverished they die quicker, the immune system can very easily break down if the person is not having food on their table because some people may be worried about where they will get a slice of bread.’ Picking up on this relationship between poverty, poor nutrition and immuno-suppression, groups like the TAC coupled their struggle for universal access
Anthropology & Medicine
65
to drugs with more broad-based demands for improved access to food, employment and government grants. Conclusion The living-positively dictum, communicated to newly infected women through counselling, support group meetings and activist organizations, provides women with a compelling alternative narrative in the face of HIV diagnosis. The South African women who participated in this study revealed that they accommodated their new identities as HIV-positive women into their life narratives, creating congruence and continuity where such identity and life continuity had been threatened following diagnosis. Life with HIV was not diametrically opposed to their pre-diagnosis lives, and some of the women expressed that they had found renewed meaning and purpose following diagnosis. When considering the meaning and effect of the living positively dictum in a resource-constrained setting, it is important to consider the factors that may contribute to the appeal and possibility of such a strategy. These HIV-positive women were in a particularly good position from which to embrace the living positively dictum. They were largely healthy with few if any symptoms of HIV infection. Some of them were HIV-infected mothers who had recently experienced what was seen as a miracle of delivering a healthy baby. The women had access to good support networks consisting of fellow HIV-positive mothers and shared a hope—given credence to by on-going activist demands and political-legal struggles—that treatment might become available before they would succumb to AIDS. In this paper, we have aimed to show that living positively represents a powerful and effective narrative strategy for women who have been diagnosed with HIV, and that this is in part attributable to the context in which the women were living. Cape Town in 2002 was at a particularly hopeful juncture, and the political and social enthusiasm created in part by activist success and expansion of testing and treatment initiatives created particularly fertile ground for positive living.
Acknowledgements We thank the individuals who gave freely of their time during our stay in Cape Town and consented to participate in this research. We also thank Murray Last and Roland Littlewood, our MSc supervisors at University College London. This study was funded by the Department of Anthropology, University of London Master’s Research Awards (Levy and Storeng), and Tom Wilhelmsen Foundation Research Scholarship, the Norwegian Government Educational Fund Scholarship and Save the Children Norway Research Fund (Storeng). We thank the anonymous reviewers and editors of Anthropology & Medicine for their helpful comments.
66
J. M. Levy and K. T. Storeng
References Alonzo, A. & Reynolds, N. (1995) ‘Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory’, Social Science and Medicine, vol. 41, pp. 303–315. Auerbach, J., Wypijewska, C. & Brodie, H. (eds) (1994) AIDS and Behaviour: An Integrated Approach, National Academy Press, Washington, DC. Becker, G. (1994) ‘Metaphors in disrupted lives: Infertility and cultural constructions of continuity’, Medical Anthropology Quarterly, vol. 8, no. 4, pp. 383–410. Becker, G. (1997) Disrupted Lives: How People Create Meaning in a Chaotic World, University of California Press, Berkeley. Brandt, A. & Rozin, R. (1997) ‘Introduction’ in Morality and Health, eds A. Brandt & P. Rozin, Routledge, New York, pp. 1–11. Bruner, J. (1987) ‘Life as narrative’, Social Research, vol. 54, no. 1, pp. 11–32. Cain, C. (1991) ‘Personal stories: Identity acquisition and self-understanding in Alcoholics Anonymous’, Ethos, vol. 19, no. 1, pp. 210–253. Coetzee, D., Hilderbrand, K., Boulle, A., Draper, B., Abdullah, F. & Goemaere, E. (2005) ‘Effectiveness of the first district-wide programme for the prevention of mother-to-child transmission of HIV in South Africa’, Bulletin of the World Health Organization, vol. 83, no. 7, pp. 489–493. Crossley, M. (1999) ‘Stories of illness and trauma survival: Liberation or repression’, Social Science and Medicine, vol. 48, pp. 1685–1695. Csordas, T. (1994) ‘Introduction: The body as representation and being-in-the-world’ in Embodiment and Experience: The Existential Ground of Culture and Self, ed. T. Csordas, Cambridge University Press, Cambridge, pp. 1–25. De Jager, W. & Kirk, J. (1998) ‘Using groups to help people’ in Psychiatry and Primary Health Care: A Practical Guide for Health Care Workers in Southern Africa, ed. S. Baumann, Juta, Cape Town, pp. 423–432. Frank, A. (1995) The Wounded Storyteller: Body, Illness, and Ethics, University of Chicago Press, Chicago. Good, B. (1994) Medicine, Rationality, and Experience, Cambridge University Press, Cambridge. Hunt, L. (2000) ‘Strategic suffering: Illness narratives as social empowerment among Mexican cancer patients’ in Narrative and the Cultural Construction of Illness and Healing, eds C. Mattingly & L. Garro, University of California Press, Berkeley, pp. 88–107. Janzen, J. (1982) ‘Drums anonymous: Towards an understanding of structures of therapeutic maintenance’ in The Use and Abuse of Medicine, eds M. De Vries, R. Berg & M. Lipkin, Praeger, New York, pp. 154–165. Mattingly, C. (1998) Healing Dramas and Clinical Plots: The Narrative Structure of Experience, Cambridge University Press, Cambridge. Migliore, S. (2001) ‘From illness narratives to social commentary: A Pirandellian approach to ‘‘nerves’’’, Medical Anthropology Quarterly, vol. 15, no. 1, pp. 100–125. Ochs, E. & Capps, L. (1996) ‘Narrating the self’, Annual Review of Anthropology, vol. 25, pp. 19–43. Peacock, J. & Holland, D. (1993) ‘The narrated self: Life stories in process’, Ethos, vol. 21, no. 4, pp. 367–383. Pierret, J. (2000) ‘Everyday life with AIDS/HIV: Surveys in the social sciences’, Social Science and Medicine, vol. 50, pp. 1589–1598. Scheper-Hughes, N. & Lock, M. (1987) ‘The mindful body: A prolegomenon to future work in medical anthropology’, Medical Anthropology Quarterly, vol. 1, no. 1, pp. 6–41. Schiller, N., Crystal, S. & Lewellen, D. (1994) ‘Risk business: The cultural construction of AIDS risk groups’, Social Sciences and Medicine, vol. 38, pp. 1337–1346. Schoepf, B. (2001) ‘International AIDS research in anthropology: Taking a critical perspective on the crisis’, Annual Review of Anthropology, vol. 30, pp. 335–361. Steffen, V. (1997) ‘Life stories and shared experience’, Social Science and Medicine, vol. 45, pp. 99–111.
Anthropology & Medicine
67
Treichler, P. (1988) ‘AIDS, gender, & biomedical discourse: Current contests for meaning’ in AIDS: The Burdens of History, eds E. Fee & D. Fox, University of California Press, Berkeley, pp. 190–266.
Appendix: Thematic Interview Guide for Interviews with Women Living with HIV Introduction
Could you tell us a little bit about your life?
Background
How old are you? Where are you from? What is your religion? What is your first language? What is your ethnic group? Are you married/have a partner? Do you have children? If so, how many? HIV
When did you discover that you were HIV positive? How did you discover this? Why did you decide to be tested? What were the most difficult problems you faced in finding out that you are HIV positive? Have you disclosed your status to others? If so, how did you do this? Why did you do this? What were the reactions of others? If not, why have you chosen not to disclose? How do you find support? How does HIV affect your day-to-day life? Have you experienced illnesses? What do they feel are the key/significant problems for women with HIV? Where do you believe resources should be focused so that they might make a significant difference to everyday life? HIV Groups
Are you involved in any groups that deal with issues around HIV? When and how did you decide to get involved in his group? What do you feel is your role in addressing HIV issues? Are you involved in activism? What is your role as an activist? Has activism/involvement in HIV opened up opportunities for you?
68
J. M. Levy and K. T. Storeng
Understanding HIV
What do you think the causes are of the high rates of HIV in South Africa? Do you think poverty perpetuates HIV? How do politics play into HIV?
Conclusion
What are your hopes for the future for yourself? Family? Friends? Community? Country? Is there anything else you think we should know about your experiences of HIV in South Africa?
Living Positively: Narrative Strategies of Women Living with HIV in Cape Town, South Africa Jennifer M. Levy and Katerini T. Storeng
Therapeutic interventions to address HIV in Africa mean that individuals are increasingly diagnosed with HIV prior to severe health crisis. This paper contributes to the anthropological literature on living with HIV by focusing on the creation and use of narrative and practical strategies for addressing HIV in a setting where such experiences have to date received little attention. Specifically, focus is on the discursive strategy of ‘living positively’, a forceful and much propagated orientation to life following an HIV diagnosis. In this paper the authors examine how this strategy is embraced not only by individuals living with HIV, but also by activists, HIV support organizations and public health agencies. The paper is based on fieldwork in and around Cape Town, South Africa in 2002 and draws on open-ended interviews with 12 women living with HIV and observations from support groups, activist events and public health meetings. The research indicates that the living positively dictum is imbued with a multiplicity of meanings and that it is used in diverse ways. For women living with HIV the practical and philosophical elements of positive living have social and political force in transforming personal and social attitudes about HIV, especially about HIV testing and treatment access. At the same time, however, the dictum poorly addresses the structural constraints of living with HIV and places the responsibility for positive living squarely on the individual. Despite this, the political context that prevailed in Cape Town at the time of the research created a particularly fertile juncture for embracing the living positively philosophy.
Introduction ‘Living positively’ has become a maxim for people around the world living with HIV. The idea of ‘positive living’ is also used to address other illnesses and disabilities, but it is advocated with particular force for people living with HIV. Living positively Correspondence to: Jennifer M. Levy, Department of Anthropology, McMaster University, 1280 Main Street West, Hamilton, Ontario L8S 4L9, Canada. Tel.: 1-416-628-9882; Fax: 1-905-522-5993; Email: levyjm@ mcmaster.ca ISSN 1364–8470 (print)/ISSN 1469–2910 (online) ß 2007 Taylor & Francis DOI: 10.1080/13648470601106343
56
J. M. Levy and K. T. Storeng
involves adopting a particular narrative account of life with HIV, which aims to transform the devastation brought to life by an HIV diagnosis into a coherent story. This kind of narrative is not merely creative story making, but rather seeks to accommodate new realities within pre-existing expectations for the life course and focuses on the ability, through modified behaviours and attitudes labelled ‘positive living advice’, to enhance self-fulfilment in the face of the adversity accompanying diagnosis with a life-threatening illness. In the absence of access to adequate medical care and antiretroviral therapy, adhering to positive living advice emerges as one of the only possible avenues for individuals to affect the course of HIV. The assumption is that nutritious diet, adequate sleep, exercise, stress reduction, preventive behaviours—for instance the use of condoms to prevent HIV re-infection—and appropriate health-care seeking will improve immune functioning and delay the onset of opportunistic infections and AIDS. The capacity to engage in these behaviours are purported within the positive living discourse to be facilitated by individuals’ open and accepting attitude towards HIV, demonstrated through disclosure of one’s status to friends and family and participation in support groups where positive living ideals are communicated and psycho-social support is gained. The behavioural and philosophical elements of living positively aim to challenge, on the one hand, the image of the culpable AIDS sufferer and, on the other hand, the assumption that an HIV diagnosis leads to an inevitably rapid demise. In this paper we explore the meaning of living positively for HIV-positive women in Cape Town, in South Africa’s Western Cape Province in 2002. The strength of this strategy must be seen in the context of the dynamic political, activist, policy and prevention environment around HIV and AIDS that existed in the Western Cape Province. In 2002, the Western Cape Province was among the first places in subSaharan Africa to be able to boast near universal public provision of prevention of mother-to-child transmission (PMTCT) services. At the same time, the Treatment Action Campaign (TAC), a prominent AIDS activist group, was completing successful court action against the national Department of Health over the constitutional right to access nevirapine, an anti-retroviral medication, which was to be the bedrock of universal expansion of the PMTCT programme. The TAC drew much of its legal clout and inspirational force from the Western Cape, where the Provincial Department of Health had defied national level policy and implemented PMTCT services and explicitly supported the TAC’s claims in court. At this time, the Western Cape had the lowest HIV prevalence of any South African province, although some townships, like Khayelitsha, report antenatal prevalence rates approaching 23 per cent (Coetzee et al. 2005). Taken together, these events had created a sense of optimism about combating the HIV epidemic in the Western Cape and gave strength to the positive living discourse. In this paper, living positively is explored as a dynamic strategy co-created and transmitted in the public realm by activist organizations, support groups, and public health agencies with the leadership and involvement of their HIV positive constituencies. Our research indicates that living positively was embraced not only by women, activists and support groups, but even by the health authorities, because
Anthropology & Medicine
57
of the promise it held for women’s participation in broader movements for social change and the management of HIV. In focusing on the accounts of HIV-positive women living in and around Cape Town, we argue that for these women, the positive living dictum provided practical tools for rebuilding the self following an HIV diagnosis. Furthermore, the dictum provided guidelines for pragmatically overcoming some of the structural constraints of daily life with an HIV infection, particularly those relating to health-care access. The discourse of living positively, however, ignores some of the real structural, physical and financial constraints that women encountered in following its directives, and placed the responsibility for action directly on the individual and thereby articulated morally correct ways of being HIV positive. Methods The primary data contained in this paper are derived from anthropological fieldwork in Cape Town and the surrounding townships during June and July 2002. During the study we conducted formal, semi-structured, tape-recorded interviews; informal, semi-structured interviews; and engaged in participant observation. Interviews were developed thematically; when new themes emerged they were followed up with additional questions and incorporated into future interviews (see the Appendix for the thematic interview guide used with women living with HIV). Written or verbal informed consent was obtained from all participants. Individuals were recruited into the study through: (1) networks developed through AIDS Service Organizations (ASOs); (2) presentations at support group meetings; and (3) referrals by other study participants. In total, we spoke with 12 women living with HIV, including seven HIV-infected women who were also lay counsellors or mentors. The majority of these women lived in the townships surrounding Cape Town, and a majority had recently been through a prevention of mother-to-child transmission programme and given birth. In addition, we interviewed 11 lay or professional HIV counsellors; 12 public health researchers, policy makers, and people involved in ASOs; and two health-care providers. In many cases, the formal interviews were one component in on-going discussions that occurred over the course of the fieldwork at many sites as we attended support group meetings, conferences and policy meetings. Media and promotional materials produced by activist organizations and educational programmes in and around Cape Town also inform our understanding of the living positive dictum.
Narrative Strategy The proliferation of theoretical discussions about narrative within anthropology is not accompanied by any consensus regarding what narrative is or about narrative’s relationship to experience. Narrative can be understood as a fundamental process in the creation of self in that it is a primary mode of cognitive functioning and worldmaking (Bruner 1987; Ochs & Capps 1996). Becker (1997) describes how narrative contributes to meeting the universal, but culturally specific, human need for
58
J. M. Levy and K. T. Storeng
continuity through life (see also Becker 1994; Good 1994; Frank 1995). For a sense of continuity to be achieved, the life story must be re-structured in light of new circumstances and possibilities brought by illness, because illness happens in a life that already has a story. Maintaining a connection between the past, the present, and the future is an exercise in what psychoanalyst Donald Spence calls ‘narrative truth’ (Frank 1995). This is the process of emplotment, the creation of a story out of disparate elements and events (Becker 1997). As more than a mere recitation of what has been, narratives are seen as a form of action in the world, which work to create a life (Mattingly 1998). Narratives are not, however, solely individual phenomena. As Peacock & Holland (1993) illustrate, narratives are additionally important in the ‘formation and maintenance of social relationships and collective identity’ (p. 372). As a product of interaction between narrators and interlocutors, narratives are an outcome of cultural and collective dynamics. Thus, we understand narrative as the socially and culturally mediated way in which individuals come to understand their experiences in the world and share these with others. Several anthropologists have argued that narratives express the effect of illness, corporeal violence, social relations and political and economic structures on the body (Scheper-Hughes & Lock 1987; Csordas 1994). While expressing these structures, narratives may also resist dominant structures by challenging prevailing and inadequate cultural themes and enacting new ones (Hunt 2000; Migliore 2001). One site where dominant themes are challenged is in self-help groups (Janzen 1982). Such groups often have their own powerful alternative narratives that contradict prevailing constructions of specific illnesses and create new illness perceptions and practices (Cain 1991; Steffen 1997). Groups may create narratives in opposition to cultural norms; the group norms themselves may be equally powerful and may even oppress individuals’ alternative interpretations and story telling. For example, in construction of illness as quest (Frank 1995), common in autobiographies and self-help groups, story-tellers appear as moral agents who speak of the ability to transcend illness. The danger of such stories is their authority in constructing illness as transformation and growth, while often denying the embodied pain, suffering and degeneration that often characterize illness. This kind of story telling, which finds its manifestations in support groups and self-help literature, is described by Crossley (1999) as ‘just another of Foucault’s ‘‘technologies of the self’’’, because people are encouraged to seek out ‘positive’ and ‘good’ elements of their emotional, psychological and physical selves. One of the problems associated with such narratives is that they can become the ‘morally correct’ way of being ill.
Living Positively as a Narrative Strategy For individuals living with HIV, positive living represents a narrative strategy for creating coherence in a life story that has been disrupted because diagnosis challenges the taken-for-granted conceptions of self (Good 1994). An HIV diagnosis—in
Anthropology & Medicine
59
contrast with an AIDS diagnosis—is particular because it does not necessarily imply ill-health, but rather indicates that the onset of life-threatening disease is relatively imminent and inevitable without medication. Despite possible good health, the impact of an HIV diagnosis creates what Pierret (2000) has called a ‘watershed’ separating ‘before’ and ‘after’. One 35-year-old mother of three who had been diagnosed during her most recent pregnancy described her experience, The nurse said ‘you are positive’. No, I couldn’t even question her or ask her anything because my tears were just rolling. The first thing that went through my mind was my baby inside. Is he going to have it? And what am I going to say to my other kids, because they are still young? And now they are going to hear that I am positive and they are going to think that I am going to die now. What am I going to tell my family now? Are they going to accept me or what?
Whether presenting for voluntary counselling and testing (VCT) on its own or as part of the PMTCT programme, women who received HIV diagnoses were delivered a deliberately articulated discourse on positive living, comprising not only preventive health and nutrition advice aimed at slowing the onset of symptoms or decreasing the risk of vertical transmission from HIV-positive pregnant women to their foetus or baby, but also advice on how to cope with the diagnosis. Emphasis was placed on the importance of disclosure and the support of male partners and other family members. Support groups were an integral part of VCT services, which aimed to reinforce the positive living advice offered in individual counselling sessions. Living positively was effective not only because illness causes discontinuity in the embodied experience, but also because the strategy challenged the negative social constructions of the disease. HIV has become a polysemic concept, implying not just a gradual deterioration of the immune response. It has taken on a large number of meanings related to sexuality, race and class, leading Treichler (1988) to refer to AIDS as ‘an epidemic of signification’. Never benign, social constructions of disease have embedded within them moral judgements on right and wrong, good and bad, and responsibility and danger. To a large extent, social constructions of AIDS have drawn on scientific and public health classifications of ‘risk groups’ and ‘risk behaviours’. Infection with HIV is associated with misbehaving and promiscuity and other forms of demarcated ‘risky’ behaviour. In this view, AIDS is caused by a moral failure of the individual (Brandt & Rozin 1997). Schoepf (2001) argues that once placed in a risk category, individuals are separated from other sources of identity, and are, by definition, stigmatized and degraded. As one lay counsellor involved in delivering VCT explained, ‘When you tell someone that you are HIV positive they think about unsafe sex and sleeping around. People don’t want to be associated with people like that. It’s linked to morality.’ The construction of HIV as a disease that affects socially deviant groups has facilitated distancing and denial of personal risk by people who do not consider themselves to be members of these groups (Schiller et al. 1994). The HIV-positive women in our study described, retrospectively, that they had felt little personal vulnerability prior to diagnosis because HIV was something that happened to others. One woman explained, ‘Before I found out, HIV didn’t worry me because I wasn’t expecting me to have it. I didn’t know anybody who had HIV.
60
J. M. Levy and K. T. Storeng
I wasn’t interested in that. I never watched the news about it because I thought I didn’t have it. Why must I worry?’ Some self-ascribed ‘coloured’ informants relayed not feeling vulnerable because HIV is a ‘black disease’. Women dissociated themselves from the ‘ignorance’ and ‘promiscuity’ that places ‘other’ individuals at risk. One 26-year-old HIV-positive mother explained, ‘I don’t want to tell lies. I thought if a woman doesn’t like herself and sleeps anywhere she wants to sleep, then she’s got this virus. I didn’t know you could have the virus without sleeping around. I thought it was for the people who don’t care about themselves.’ The mass-scale testing of women in the context of the PMTCT programme contributed to dramatically changing the public face of HIV and AIDS in Cape Town. Prior to the PMTCT programme there had been no real incentives for individuals to be tested, since treatment was either unavailable or unaffordable. Despite the bleak prospects for infected individuals, activist groups such as the TAC and various support groups actively propagated reconstructions of prevailing attitudes and stereotypes of HIV, relying on testimonials of HIV-infected individuals looking healthy and living fulfilling lives to contradict the stereotypes associated with HIV and AIDS. With PMTCT the public face of HIV was transposed beyond exclusive activist circles to maternity clinics and neighbourhoods and came to be represented by the image of a seemingly healthy HIV-positive mother and her HIVnegative baby, de-stabilizing entrenched understandings of vulnerability to HIV. This normalization strategy relied not only on denying stereotypes, but also involved challenging visual representations of HIV and AIDS sufferers as emaciated, sick and dying. For HIV-positive women, showing a healthy face was intended not only to restore their individual sense of identity, but also to challenge societal impressions of what it means to be HIV positive. It was by dispelling their original assumptions about HIV and AIDS that women were able to reconstruct themselves as HIV-positive women who could, nevertheless, live positively. The living positively dictum is thus one attempt to overcome the disjuncture between how HIV-positive individuals view their pre-diagnosis selves and how they view ‘others’ affected by HIV. Women themselves insisted that increased knowledge amassed through participation in support groups and activist groups had placed them in a position to help not only themselves, but also other women in similar situations. They repeatedly emphasized the importance of disclosing their HIV infection in part to show that, contrary to their own expectations, individuals who look healthy and happy can also be HIV infected. One HIV-positive mentor relayed the experience of a first-time visitor to her support group, One patient told me, she was crying, she was expecting to see sick people, dying people, ugly people, ‘and when I see all these beautiful people, I can also look like this’. And I said ‘yes you can look beautiful. You can even look sexier than me’. When they come here they expect us to be sick and when they see us they take courage.
Living positively thus aims to challenge the expectation that HIV necessarily leads to rapid death, an assumption that contributes to fear and stigmatization. The women generally admitted to holding such conceptions before ‘becoming educated’
Anthropology & Medicine
61
about HIV. One woman said, ‘I didn’t have any information about HIV. I just knew that I was going to die and I knew that my daughter was also going to die very soon.’ She conveyed how her mother wanted to take her and her daughter back to the Eastern Cape when she found out about her and her daughter’s diagnosis: ‘She thought we would die soon so she didn’t want us to die here and spend the money to take us back.’ The expectation that being HIV positive meant that death was imminent was widespread and was perceived as a major impediment to coping by HIV-infected women. Denying that an HIV diagnosis inevitably leads to rapid death relies on the same kind of strategy as the revised narratives of risk mentioned above, which normalize the diagnosis by drawing on the uncertainty of all life: It’s like accepting the fact that one doesn’t know when she or he is going to die. And if you die it’s the time for you to die. Because I can have HIV and live for ten years and you cannot, but you can leave on the road with this car and have an accident and you can die.
Living Positively—An Imperfect Strategy Despite their general commitment to the living positively narrative strategy, women were not always able to adhere to its insistence on a positive outlook and prescribed lifestyle. This was because the highly rational and individualistic behaviour implied by the model is not always a possibility in real life. Schoepf (2001) argues that the currently dominant biomedical model of health, which incorporates capitalist assumptions about health resulting from individually chosen lifestyles, neglects how behaviours are related to social conditions and the manners in which communities shape the lives of their members. Like similar psychologized models of health behaviour (see Auerbach et al. 1994), the positive living dictum implicitly assumes that individuals carry out some sort of cost–benefit calculation in order to maximize their gains from various health-related behaviours, without taking into account the structural and social constraints that operate to shape these behaviours. The women supported the openness rhetoric of disclosure, but in practice, disclosure—even to sexual partners—was far from universal. The reluctance to disclose was based on the real risk of social exclusion that could accompany the act of disclosure—several of the women described being ‘abandoned’ by their male partner after receiving an HIV diagnosis, and one expressed regret, saying that she no longer expected ‘to get married and do the normal things in life’ because she had been open about her HIV diagnosis. In many cases, women were economically dependent on men for their own and their children’s survival, and disclosure, if it led to rejection, could push them into destitution. Several HIV-positive lay counsellors admitted that they were hiding their own diagnoses out of fear that they would be rejected, even though they encouraged women that they encountered through their work to disclose to their partners. That women embrace the benefit of disclosure before they have actually disclosed their own diagnosis demonstrates that women learn what it means to live positively and develop strategies on how to do so through their own and others’ narratives of positive living (Cain 1991).
62
J. M. Levy and K. T. Storeng
Maintaining the positive outlook promoted by the positive living dictum was challenged by the reality of having received a life-threatening diagnosis, and especially by having few resources with which to follow the lifestyle directives of the strategy. Good nutrition is often heralded as one effective way of preserving adequate immune functioning, yet women explained how they struggled to eat healthily because they could not afford to buy the required fruits, vegetables and protein. In the townships where the women lived, an HIV diagnosis exacerbated pre-existing concerns about daily survival in the face of rampant unemployment, poverty and limited access to health care. Receiving an HIV diagnosis rendered the women’s already precarious work lives even more uncertain; both because HIV-positive individuals were often discriminated against in the workforce and because being diagnosed made it difficult to find motivation to continue working. One woman, who became a mentor for HIV-positive pregnant women following her own diagnosis during pregnancy, described some women’s inability to cope with diagnosis, ‘Some of the women give up, you know, they think that it is the end of their life, so they don’t get jobs anymore’. Negotiating work demands was perhaps particularly difficult for those women who were symptomatic or who had sick children, as one counsellor and home-based carer, explained, Most of the time the babies are sick, they are sickly. And then if the mother is employed the employer will get angry, ‘I need somebody who is going to be here everyday, not somebody who will come twice or three times a week. So it means now you should stop working, go and look after your baby. I’ll get somebody else’. Now there is no income at all. So, the mother has to see how she is going to feed the baby because she cannot get work. She has got to look after the baby, she’s got to feed the baby, and she’s got to feed the other children that she’s got.
Additionally, geography, poverty, stigma, denial, old age and sickness create further barriers to women’s ability to access support services and follow the advice advocated in the positive living dictum. Daily life, even for those who were living positively, was precarious. Loss of a job, illness, change in family or living situation, could easily tip the balance away from positive living. Despite these difficulties, the transformation of the self through the kinds of regulatory practices espoused by the living positively dictum was one of very few recourses open to women in Cape Town, who lacked access to medications or individualized treatment and support.
Living Positively and the Broader Mobilization of Political Claims Support groups and activist groups represent the site of communication and empowerment in the living positively dictum, and in Cape Town these arenas also became the base for wider social change. Support groups provided women with the opportunity to meet people who were in the same position, forming groups of what Alonzo & Reynolds (1995) describe as ‘a community of ‘‘own’’’. In this new ‘community’, women discovered that despite the adversity they were experiencing, they were able to provide other newly diagnosed women with valuable support and newfound expertise. This made the women, as de Jager & Kirk (1998) elaborate, more
Anthropology & Medicine
63
inclined to see themselves as individuals with strengths and resources than as victims. An HIV-positive lay counsellor described the strength she was able to give to other women, I always tell people that it is never the end of the world to be HIV positive and that they must never give up. It doesn’t mean you just have to sit around and wait for your day to come. Because your day might never come while you are waiting for it. Maybe it can come after twenty years and you would have done so much. So just carry on and live your life to the fullest. I am strong and they draw some strength from me. It also gives me strength knowing that other people draw some strength from me.
Within support groups, HIV-positive women challenged prevailing notions about what it means to be HIV positive, but these women also saw their role as extending into their home communities. All of the women emphasized the importance of openness about HIV as a prerequisite to dispelling negative stereotypes about people living with HIV. Those who had disclosed their diagnosis to family members, partners, friends or neighbours described themselves as community agents for change by publicly opposing the silence surrounding HIV, by educating others and thereby contributing to the dissemination of positive messages about HIV testing. One woman described her hope, ‘I wish my family can understand and carry the message. So that the information I give can also be passed to someone else and from someone else they can also send the message to other people and make them understand.’ A common theme emerging from discussions with women, activist, counsellors, public health practitioners and policy-makers was that the women’s experiences and life stories could be deployed to change attitudes and practices relating to HIV. They could be used to show that ‘normal’ women and mothers can be infected by HIV, and that this will affect both prevention efforts and societal reactions to those affected. An HIV-positive mother and AIDS activist described this transition: Because now I believe that by hating HIV positive people you are stigmatizing yourself. You are the first person who stigmatizes yourself. But by sharing your experience with other people it means that there is nothing wrong with you. Anyone can be HIV positive. Speaking out, it means that the stigma is going away.
Another HIV-positive woman was presented with the opportunity to become a mentor for women going through the PMTCT programme. As part of the dissemination of an innovative approach relying on unskilled HIV-positive mothers as mentors, this woman and three of her fellow mentors were sent to the 2002 International AIDS conference in Barcelona to describe their involvement in the programme. Right before departing for Spain, this woman decided to disclose her HIV-positive status to her family and neighbours. When she returned one week later, her situation had been transformed as she and the other mentors had been featured in local media. She described her experience of disclosing to members of her community, So I went to them and we sat and chatted and I said ‘Do you know I am HIV positive? You know that conference in Barcelona? I’m going to that conference’. Just like that.
64
J. M. Levy and K. T. Storeng Then they sit and they think ‘Maybe if you have it maybe I have it also’. ‘You didn’t move around. Maybe I should also go for testing.’
Being asked to represent HIV-positive mothers who had used their illness to espouse social change and offer support, this woman had effectively been given legitimacy as an expert in her local community. Her strategy of education was based on dispelling the impression that some women are exempt from risk, by showing that ‘normal’, non-promiscuous mothers such as her could be affected. The potential of HIV-positive women to affect broader social change was recognized and capitalized upon by the Western Cape Province’s Department of Health. The power of mobilizing women relied very much on the fact that these women were mother figures who, despite being infected with HIV, showed few or any signs of disease. One Department of Health policy-maker explained that prior to the PMTCT programme, ‘We didn’t really have a pool of well HIV positive people that we knew about.’ Being able to identify patients who have not yet become sick opened up possibilities for spreading messages about positive living, including the importance of HIV testing: We are able to give them a whole lot of information about positive living, about healthy diets and exercise and all those kinds of things, teaching her to recognise opportunistic infections early so that she can come to the clinic to be treated. Then of course as that individual knows her positivity, we encourage her to speak to her partner, which then brings another person to be tested. And then the whole family becomes affected by the infected couple and therefore a whole wider kind of educational thing of grandparents and siblings and so on.
The emphasis on positive living, this policy-maker explained, indicated a shift from ineffective prevention programmes that were intended to prevent a predominantly HIV-negative population from becoming positive to VCT and PMTCT, a ‘golden opportunity of captive audience of well women who have come and been given this opportunity. And in being negative, have also been educated about keeping negative and what their risks might or might not be.’ The impression was that these largely asymptomatic HIV-positive mothers constituted a ‘critical mass’ that could be instrumental in creating social change towards increasing the acceptance of HIV testing, mobilizing demands for treatments and other public health action and eventually promoting acceptance and inclusion of HIV-affected individuals. Positive living was one of few directives offered by the public health authorities to individuals who have been diagnosed with HIV, and it is not surprising that the state’s obligation to provide the conditions to enable such positive living took on political significance. The discursive link between poverty and disease was politically compelling in this setting, and obvious to HIV-positive women. One woman shared her observation: ‘What I have noticed is if people are impoverished they die quicker, the immune system can very easily break down if the person is not having food on their table because some people may be worried about where they will get a slice of bread.’ Picking up on this relationship between poverty, poor nutrition and immuno-suppression, groups like the TAC coupled their struggle for universal access
Anthropology & Medicine
65
to drugs with more broad-based demands for improved access to food, employment and government grants. Conclusion The living-positively dictum, communicated to newly infected women through counselling, support group meetings and activist organizations, provides women with a compelling alternative narrative in the face of HIV diagnosis. The South African women who participated in this study revealed that they accommodated their new identities as HIV-positive women into their life narratives, creating congruence and continuity where such identity and life continuity had been threatened following diagnosis. Life with HIV was not diametrically opposed to their pre-diagnosis lives, and some of the women expressed that they had found renewed meaning and purpose following diagnosis. When considering the meaning and effect of the living positively dictum in a resource-constrained setting, it is important to consider the factors that may contribute to the appeal and possibility of such a strategy. These HIV-positive women were in a particularly good position from which to embrace the living positively dictum. They were largely healthy with few if any symptoms of HIV infection. Some of them were HIV-infected mothers who had recently experienced what was seen as a miracle of delivering a healthy baby. The women had access to good support networks consisting of fellow HIV-positive mothers and shared a hope—given credence to by on-going activist demands and political-legal struggles—that treatment might become available before they would succumb to AIDS. In this paper, we have aimed to show that living positively represents a powerful and effective narrative strategy for women who have been diagnosed with HIV, and that this is in part attributable to the context in which the women were living. Cape Town in 2002 was at a particularly hopeful juncture, and the political and social enthusiasm created in part by activist success and expansion of testing and treatment initiatives created particularly fertile ground for positive living.
Acknowledgements We thank the individuals who gave freely of their time during our stay in Cape Town and consented to participate in this research. We also thank Murray Last and Roland Littlewood, our MSc supervisors at University College London. This study was funded by the Department of Anthropology, University of London Master’s Research Awards (Levy and Storeng), and Tom Wilhelmsen Foundation Research Scholarship, the Norwegian Government Educational Fund Scholarship and Save the Children Norway Research Fund (Storeng). We thank the anonymous reviewers and editors of Anthropology & Medicine for their helpful comments.
66
J. M. Levy and K. T. Storeng
References Alonzo, A. & Reynolds, N. (1995) ‘Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory’, Social Science and Medicine, vol. 41, pp. 303–315. Auerbach, J., Wypijewska, C. & Brodie, H. (eds) (1994) AIDS and Behaviour: An Integrated Approach, National Academy Press, Washington, DC. Becker, G. (1994) ‘Metaphors in disrupted lives: Infertility and cultural constructions of continuity’, Medical Anthropology Quarterly, vol. 8, no. 4, pp. 383–410. Becker, G. (1997) Disrupted Lives: How People Create Meaning in a Chaotic World, University of California Press, Berkeley. Brandt, A. & Rozin, R. (1997) ‘Introduction’ in Morality and Health, eds A. Brandt & P. Rozin, Routledge, New York, pp. 1–11. Bruner, J. (1987) ‘Life as narrative’, Social Research, vol. 54, no. 1, pp. 11–32. Cain, C. (1991) ‘Personal stories: Identity acquisition and self-understanding in Alcoholics Anonymous’, Ethos, vol. 19, no. 1, pp. 210–253. Coetzee, D., Hilderbrand, K., Boulle, A., Draper, B., Abdullah, F. & Goemaere, E. (2005) ‘Effectiveness of the first district-wide programme for the prevention of mother-to-child transmission of HIV in South Africa’, Bulletin of the World Health Organization, vol. 83, no. 7, pp. 489–493. Crossley, M. (1999) ‘Stories of illness and trauma survival: Liberation or repression’, Social Science and Medicine, vol. 48, pp. 1685–1695. Csordas, T. (1994) ‘Introduction: The body as representation and being-in-the-world’ in Embodiment and Experience: The Existential Ground of Culture and Self, ed. T. Csordas, Cambridge University Press, Cambridge, pp. 1–25. De Jager, W. & Kirk, J. (1998) ‘Using groups to help people’ in Psychiatry and Primary Health Care: A Practical Guide for Health Care Workers in Southern Africa, ed. S. Baumann, Juta, Cape Town, pp. 423–432. Frank, A. (1995) The Wounded Storyteller: Body, Illness, and Ethics, University of Chicago Press, Chicago. Good, B. (1994) Medicine, Rationality, and Experience, Cambridge University Press, Cambridge. Hunt, L. (2000) ‘Strategic suffering: Illness narratives as social empowerment among Mexican cancer patients’ in Narrative and the Cultural Construction of Illness and Healing, eds C. Mattingly & L. Garro, University of California Press, Berkeley, pp. 88–107. Janzen, J. (1982) ‘Drums anonymous: Towards an understanding of structures of therapeutic maintenance’ in The Use and Abuse of Medicine, eds M. De Vries, R. Berg & M. Lipkin, Praeger, New York, pp. 154–165. Mattingly, C. (1998) Healing Dramas and Clinical Plots: The Narrative Structure of Experience, Cambridge University Press, Cambridge. Migliore, S. (2001) ‘From illness narratives to social commentary: A Pirandellian approach to ‘‘nerves’’’, Medical Anthropology Quarterly, vol. 15, no. 1, pp. 100–125. Ochs, E. & Capps, L. (1996) ‘Narrating the self’, Annual Review of Anthropology, vol. 25, pp. 19–43. Peacock, J. & Holland, D. (1993) ‘The narrated self: Life stories in process’, Ethos, vol. 21, no. 4, pp. 367–383. Pierret, J. (2000) ‘Everyday life with AIDS/HIV: Surveys in the social sciences’, Social Science and Medicine, vol. 50, pp. 1589–1598. Scheper-Hughes, N. & Lock, M. (1987) ‘The mindful body: A prolegomenon to future work in medical anthropology’, Medical Anthropology Quarterly, vol. 1, no. 1, pp. 6–41. Schiller, N., Crystal, S. & Lewellen, D. (1994) ‘Risk business: The cultural construction of AIDS risk groups’, Social Sciences and Medicine, vol. 38, pp. 1337–1346. Schoepf, B. (2001) ‘International AIDS research in anthropology: Taking a critical perspective on the crisis’, Annual Review of Anthropology, vol. 30, pp. 335–361. Steffen, V. (1997) ‘Life stories and shared experience’, Social Science and Medicine, vol. 45, pp. 99–111.
Anthropology & Medicine
67
Treichler, P. (1988) ‘AIDS, gender, & biomedical discourse: Current contests for meaning’ in AIDS: The Burdens of History, eds E. Fee & D. Fox, University of California Press, Berkeley, pp. 190–266.
Appendix: Thematic Interview Guide for Interviews with Women Living with HIV Introduction
Could you tell us a little bit about your life?
Background
How old are you? Where are you from? What is your religion? What is your first language? What is your ethnic group? Are you married/have a partner? Do you have children? If so, how many? HIV
When did you discover that you were HIV positive? How did you discover this? Why did you decide to be tested? What were the most difficult problems you faced in finding out that you are HIV positive? Have you disclosed your status to others? If so, how did you do this? Why did you do this? What were the reactions of others? If not, why have you chosen not to disclose? How do you find support? How does HIV affect your day-to-day life? Have you experienced illnesses? What do they feel are the key/significant problems for women with HIV? Where do you believe resources should be focused so that they might make a significant difference to everyday life? HIV Groups
Are you involved in any groups that deal with issues around HIV? When and how did you decide to get involved in his group? What do you feel is your role in addressing HIV issues? Are you involved in activism? What is your role as an activist? Has activism/involvement in HIV opened up opportunities for you?
68
J. M. Levy and K. T. Storeng
Understanding HIV
What do you think the causes are of the high rates of HIV in South Africa? Do you think poverty perpetuates HIV? How do politics play into HIV?
Conclusion
What are your hopes for the future for yourself? Family? Friends? Community? Country? Is there anything else you think we should know about your experiences of HIV in South Africa?
