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Stigma, identity and resistance among people living with HIV in South Africa

Stigma, identity and resistance among people living with HIV in South Africa AIDS-related stigma can cause delays in testing, poor treatment adherence, and greater numbers of new infections. Existing studies from low- and middle-income countries focus on the negative experiences of stigma, and few document resistance strategies. In this article we document the diverse journeys of people living with HIV in South Africa, through ill health, testing, disclosure, and treatment, and their responses to stigma. e Th research questions of focus are: Why are some able to resist stigma despite poverty and gendered oppression, whereas others are not? Why are some people able to reach closure, adapting to diagnosis, prognosis and finding a social context within which they resist stigma and can live with their illness? e Th illness narratives reported here show that the ability to resist stigma derives from a new role or identity with social value or meaning. Generation of a new role requires resources that are limited due to poverty, and exacerbated by unstable family relations. People who are socially marginalised have fewer opportunities to demonstrate their social value, face the greatest risk of transmission, re-infection and failure to adhere to medication, and require particular support from the health sector or community groups. Keywords: stigma, resistance, identity, HIV/AIDS, South Africa. Résumé La stigmatisation associée au SIDA peut entraîner des retards de dépistage, une mauvaise adhésion au traitement et un nombre accru de nouvelles infections. Les études disponibles des pays à faible revenu et à revenu moyen se concentrent sur les expériences négatives associées à la stigmatisation, et peu abordent les stratégies de résistance adoptées. Dans cet article, nous étudions les différentes expériences de personnes vivant avec le VIH en Afrique du Sud, dès le moment où celles-ci tombent malades, se font dépister, divulguent leur état sérologique, où elles se font traiter, et leur réponse à la stigmatisation. Les principales questions que pose cette étude sont les suivantes: Pourquoi certaines personnes sont-elles capables de résister à la stigmatisation en dépit de la pauvreté et de l’oppression basée sur le genre, alors que d’autres ne le sont pas ? Pourquoi certaines personnes sont-elles capables de tourner la page, de s’adapter au diagnostic, au pronostique et de trouver un contexte social dans lequel elles peuvent résister à la stigmatisation et vivre leur maladie ? Les récits de la maladie rapportés dans cet article montrent que la capacité à résister à la stigmatisation découle d’un nouveau rôle ou d’une nouvelle identité associée à une valeur sociale ou à une signification. La création d’un nouveau rôle nécessite des ressources limitées du fait de la pauvreté, exacerbée par des relations familiales instables. Les personnes marginalisées d’un point de vue social disposent de moins d’opportunités de démontrer leur valeur sociale, et sont confrontées aux risques les plus élevés de transmission, de réinfection, et d’incapacité à suivre le traitement, et ont besoin d’un suivi spécifique par le secteur médical ou les groupes communautaires. Mots clés: Stigmatisation, résistance, identité, VIH/SIDA, Afrique du Sud. Jane Goudge, PhD, is a Senior Research Officer at the Centre for Health Policy, School of Public Health at the University of the Witwatersrand, Johannesburg. She joined the Centre in 1998 and since then has conducted research on a range of health policy and system issues including access to health care and why people drop out of treatment, the ao ff rdability of care, social protection, and health care financing. Lenore Manderson, PhD, is Professor of Medical Anthropology in the Faculty of Medicine, Nursing and Health Sciences, and Faculty of Arts, Monash University, Australia, and an Honorary Professor in the School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, South Africa. Her research spans questions of social exclusion, inequality, diversity and chronic health problems in Australia, Southeast Asia and South Africa. She is a Fellow of the Academy of Social Sciences in Australia and Fellow of the World Academy of Art and Science. Bulelwa Ngoma (MA Psychology) is a researcher at the Centre for Health Policy. Her areas of research include: understanding why patients drop out of ART programmes, and improving the provision of chronic care for ART patients; self-management in chronic diseases – patient knowledge, perceptions and processes; operationalising health as a human right and implementation of the Patient’s Rights Charter in the health sector; non-governmental organisations working with people living with HIV/AIDS in Gauteng province; the social diagnostics of stroke-like symptoms and healers, doctors and prophets in Agincourt. Helen Schneider (MB ChB, MMEd) is Associate Professor at the Centre for Health Policy and Professor Extraordinarius, University of the Free State. She leads a programme of research health policy and systems with a particular focus on HIV/AIDS. Correspondence to: jane.goudge@gmail.com 94 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Letter by Nokuzola Mk fi i: ‘ I can no longer continue with life. In this article, drawing on research conducted in Gauteng i Th s community is laughing at me, humiliating me and my Province, South Africa, we document the diverse journeys children because they say I have AIDS.’ e Th bodies of Mk fi i and of people living with HIV aer ft the national roll-out of ARV her four children were discovered in a e fi ld near her home. treatment, through ill health, testing, disclosure, and treatment, and their responses to stigma. Using the illness narratives of Daily Dispatch, Eastern Cape, South Africa 8 Aug 2008 v fi e participants as an heuristic device, we explore why some people are better able than others to develop new positive She was always saying bad things about people with HIV, but self-identity, and why some are able to resist stigma, despite I told her it would be nice if all the people who talked badly poverty and gendered oppression, while others are not. We also about HIV showed us their HIV-negative results. explore why stigmatised individuals choose a particular mode Paulinah, aged 33 of engagement with others, and the effects of this on their ability to resist stigma. Why are some people better able than others to adapt to diagnosis and prognosis? Introduction AIDS-related stigma has highly damaging consequences, limiting the impact of public health interventions through delays Methods in testing and poor treatment adherence. e Th result is a greater e Th data derive from a study on the health system constraints number of new infections, poorer health and, occasionally, as and opportunities to scale up the ARV programme in South with Nokuzola Mfiki, suicide (Mawar, Saha, Pandit & Mahajan, Africa. One component of this study was to explore the 2005; Skinner & Mfecane, 2004). A considerable literature relationship between patient factors, health system factors, documents the experience of stigma (Duffy, 2005; Reidpath, and adherence outcomes. Structured exit interviews (N=713) Brinjnath & Chan, 2005; Simbayi, Kalichman, Strebel, Cloete, were conducted with randomly selected patients at four public Henda & Mqeketo, 2007; Varas-Diaz, Serrano-Garcia & Toro- facilities in Gauteng Province. es Th e participants were asked Alfonso, 2005), measuring levels of stigma and resulting health whether they were willing to be interviewed again as part of an outcomes (Kalichman, Simbayi, Jooste et al., 2005; Mills, 2006; in-depth study, reported here. os Th e who agreed were grouped Nyblade, 2006). However, there is insufficient understanding according to gender and self-reported adherence. Sixteen of the complex pathways of experience that generate differing participants for the in-depth interviews were then selected responses including resistance to stigma (Garcia & Crocker, on a random basis from these groups. Although the original 2008; Rohleder & Gibson, 2006; Soskolne, 2003; Squire, 1999; intention was to include equal numbers of fully adherent and Whittaker, 1992). We need to understand better the social and poorly adherent participants, due to the difficulty of tracing economic circumstances and resources, in different settings, patients, only two were poorly adherent, both women. People to help people with HIV to neutralise stigma and develop new diagnosed with HIV, but who were not taking treatment or who identities (Cornish, 2006; Jewkes, 2006; Reidpath, Chan & had refused treatment, were not included in the study. (We have Gifford, 2005). since initiated a second study with patients who have withdrawn from an ARV treatment programme.) As is true for studies in industrialised settings, existing studies from low- and middle-income countries predominately focus Study participants were interviewed twice over 6 months. e Th on the experience of HIV-related stigma, with less attention to first interview elicited an illness narrative, an open-ended people’s resistance strategies (Dageid & Duckert, 2008; Makoae, self-determined account of their illness. Each participant Greeff, Phetlhu, et al., 2008; Poindexter, 2005; Rohleder & described the history of their illness, testing, adjustment to Gibson, 2006; Soskolne, 2003). In sub-Saharan Africa, studies diagnosis, experience of disclosure, interaction with existing of HIV-related stigma are predominately among populations social networks, the development of new ones, impact of HIV where ARV treatment is not easily or freely available (Campbell, on their livelihood, and interaction with health workers. e Th Foulis, Maimane & Sibiya, 2005; Kahn, 2004; Lindsey, Hirschfeld second interview explored these issues further, with the 6- & Tlou, 2003; Olenja, 1999; Pool, Nyanzi & Whitworth, 2001; month interval allowing documentation of further adjustment. Rohleder & Gibson, 2006). Although control of symptoms All interviews were conducted in the participant’s preferred will not remove stigmatising processes (Parker & Aggleton, language, either by Bulelwa Ngoma (isiXulu), or by both Harry 2003), stigma may lessen where treatment is available (Castro Nyathela and Bulelwa Ngoma if the participant’s preferred local & Farmer, 2005), and strategies to resist stigma may be more language was Sesotho. Harry Nyathela, publicly open about his possible as a person regains his/her physical health. own HIV-positive status, is an experienced HIV counsellor. All interviews were recorded, translated and transcribed verbatim. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 95 Original Article e Th narrative approach allowed us to explore how participants We have used pseudonyms in this article, as in all publications, made sense, retrospectively, of the diagnosis and prognosis of to protect the anonymity of participants. HIV and the events that followed (Kleinman 1988; Mason 2006; Mohatt, Plaetke, Klejka et al., 2007; Riessman 1993). Narratives Results of illness and other dramatic events are oen ft structured around Illness narratives a familiar trajectory, characterised by narrative closure. e Th Julius shared cultural framework of narrator and interviewer allows On leaving school, Julius (33 years) trained and practised as a for exposition, analysis, confirmation and concordance in spiritual healer within the Church of Saint John (pseudonym interpretation. Given the chronicity of conditions such as HIV, – Christian fundamentalist). Through this church, he joined a like other lifelong diseases, closure refers not to the resolution traditional healers’ organisation, participating in a programme (or cure) of the illness, but to adaptation to diagnosis, prognosis in which nurses taught its members how to look aer ft people and social meaning. Frank (1995) differentiates the strategies who have HIV/AIDS and TB. Aer ft a long period of illness, of chronic conditions in terms of quest (the search for cure), Julius tested and was diagnosed as seropositive, with a CD4 chaos (in which there is no medical or personal resolution), and count of 16. At this point, he started ARV treatment. His family, restitution, wherein the narrator finds a personal logic to their who had cared for him during his illness, were very supportive illness and its trajectory. when they learnt of his diagnosis: e Th in-depth interviews were analysed with the assistance of My mother and younger sister would wash my clothes, cook ATLAS.ti (version 5.0), with passages coded using both a priori me food, clean where I slept, and did everything for me. Being and emergent codes. e Th a priori codes were determined by the accepted by my family has meant a lot to me. I don’t think I research questions, and referred mostly to different points in would have made it without them in my life. the participant’s journey aer ft diagnosis. e Th emergent codes mostly referred to different types of experience and responses Since recovering his health, with the support of his family and reported by participants. e Th a priori code ‘identity’ refers members of the church, Julius has been able to continue actively to the notion of finding a meaningful role, i.e. a role that has to provide practical and spiritual support to others. His HIV- social value. ‘Adherence’ refers to self-reported adherence to positive status has strengthened this role: medication, including consistency of timing of medication. Three researchers read the transcripts: one coded each narrative, Some people at church come to me to seek for advice. I disclose the others reviewed and validated the emerging themes through to them so that they know that they are not on their own and discussion. Given the analytical importance of the journey I encourage them to do things correctly. i Th s also makes the through the experience of illness and stigma, from quest, chaos, discussion flow because we are all on the same platform. through to restitution (Frank 1995), the narratives needed to be From this base, Julius has the confidence to engage with health presented as whole stories. Unable to include all the narratives, workers as equals, reprimanding those who do not treat him the research team decided to include contrasting narratives, with respect: thereby illuminating a greater range of experience. Once a network of the conceptual categories had been generated, one Some shout at us without waiting for any explanation. I don’t researcher identified particular narratives that illustrated the key like to argue, but if it carries on, I tell her if she doesn’t wait categories. Where possible, the selection of the cases favoured for my explanation I will report her to the sister in charge. those narratives that provided the richest and most illuminating descriptions of the individual’s journey. Several participants, His confidence, derived from his social support, also helps him less skilled story tellers, provided briefer descriptions of events to view his treatment positively and to adhere to the regimen: and their own emotions, with less explanation as to why they I always take my treatment on time because I know the responded or acted as they did, making interpretation more consequences of not doing so. If it were to happen that I miss difficult. One researcher made the initial selection of cases; taking the tablets, I think it would be easy for me to tell the this decision was reviewed by others in the research team and nurses and doctors, so that they can help me not to repeat differences of opinion were resolved through discussion. Five this in future. stories are presented below. Julius’s only source of income is a social grant from the Ethical clearance was obtained from the University of the government, provided to those disabled by chronic illness. He Witwatersrand. All participants gave their informed consent. 96 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Article Original depends on this to meet his basic needs, including the cost of Both Phanuel and Paulinah have spoken out during stigmatising transport to hospital to collect his medication: conversations: e Th disability grant helps me to look ae ft r myself, allowing me Phanuel: When my friends talked negatively about HIV, I’d to do things like buying clothes, assisting around the house, tell them it didn’t seem right when they haven’t been tested getting transport to the hospital. If they cut mine [grant], it themselves. We would then start a huge argument and they’d would really be a huge problem. I am not working. I really turn nasty. I decided not to tell my friends about my status. don’t know how I would survive without it. Phanuel has lost friends as a result of this decision: e Th signic fi ance of the grant for Julius becomes clear when he I decided to do away with them and to focus on my family, criticises HIV support associations: to look ae ft r my wife, child and HIV. I don’t have friends I was very ill. I went to a support group and asked them to anymore. come to my house to talk about issues related to this illness. In contrast, Paulinah was open about her own status, as a way of I waited and waited but they never came, so I stopped going resisting stigma: there. I also went there to ask for a food parcel. e Th y told me that because I was getting a disability grant, I couldn’t get it. I decided to be open about my status with my neighbour. She i Th s didn’t go down well with me because I knew that others was always saying bad things about people with HIV, but I told received food parcels even though they were getting a grant. her it would be nice if all the people who talked badly about HIV showed us their HIV-negative results. But none of those Julius now has no links with HIV support organisations and, as a who talk badly have been tested. Ae ft r this, it was n fi e, she further means of self-protection, he limits his social engagement doesn’t judge (me). to the safe environment of the church: By being open about her status, Paulinah established friendships I don’t have friends. e Th people that I regard as my friends are with other HIV-positive people: my elders at church. My neighbour now has other friends who are also HIV positive, Phanuel and Paulinah so when they come to visit her I sometimes go there. It is very healing to talk with other people who are in the same situation. Phanuel (35 years) le ft school at 16 years of age, and worked as You feel accepted and you realise that you’re not on your own. a petrol garage attendant. He and Paulinah, his wife (33 years), have three children. Ae ft r one child was repeatedly ill, Phanuel Even so, the attitudes of others in their community have forced and Paulinah tested for HIV. Both were positive. Phanuel was also Phanuel and his family to move to another area where they are diagnosed with TB and stopped work. His initial response to his unknown: HIV-positive status was one of denial and anger: I could see our neighbours knew about our status because of Phanuel: I became angry with my wife, and started g fi hting the car from the support group that used to drop food parcels with her. She also blamed me for sleeping around. at our house …we decided to move from that community to start a new life (Phanuel). Paulinah: He was beating me. Phanuel is also not able to talk about HIV with his extended Phanuel: I drank alcohol a lot during that time, trying to forget family – his mother, he explained, was ‘not comfortable’ – nor at about the situation. e Th only thing I kept thinking about was his church. He and Paulinah decided to tell their pastor about death. I was losing hope in life because my child had passed their status, but because people at church ‘talk negatively about away. i Th s carried on for a long time. HIV’, they decided to tell no-one else. e Th hospital waiting room, A counsellor was close enough to the couple to be able to however, is a social space where Phanuel can talk freely: intervene: I have met people in the hospital, but we don’t keep in touch as e Th re was a nurse at the clinic who knew our situation. She friends would. We don’t judge each other. We talk a lot about made me realise there is still life, and I must focus on getting AIDS and this is a very huge relief. better, and on my family. She used to come to our house to talk. Phanuel is working again, attends church regularly, and sees his Ae ft r the sessions with her I came to be at peace with my wife immediate family, but no longer sees his friends. and our situation. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 97 Original Article When he is drunk, he talks about HIV and insists that he Phosiwe isn’t HIV-positive. He makes me angry. He doesn’t want to go Phosiwe is 52 years old and was a factory employee. She had and have the test, but two of his girlfriends have passed away. two children, but both died in the 1980s. For medical reasons, When he is drunk he wants to sleep with me without using a she had a hysterectomy in 1990. Her husband, who was not condom and I don’t allow that to happen. the father of her children, started an affair with another woman, who came to live with Phosiwe and her husband. Soon Phosiwe is open about her status. She does not hide her need to aer ft wards, her husband insisted Phosiwe leave. Forced from take medication, and actively resists stigmatisation: her home, Phosiwe stayed intermittently with her sister and an I am not scared of talking about HIV. I tell anybody who aunt, until she felt overwhelmed by their disrespect and insults, wants to listen, at church, in the train, anywhere. I don’t and decided to rent her own room. In 2001 she was admitted to want this to have a negative effect on my soul. er Th e are hospital with TB of the spine: those who still stigmatise. Last week a lady who I know saw I suer ff ed a lot because I was worrying about where I was me drinking my treatment. She gave a funny look, and I going to stay [crying]. My boyfriend asked a lady who we was, like, I don’t care about you; as long as I am taking my know to come and stay with me, so she could help me with treatment on time. the things that needed to be done. He couldn’t do all the things Phosiwe adheres to her treatment, and as a result benefits from himself as he was in and out of jail. He was a shoplier ft and a good relationship with the health workers: he was caught. He was trying to get money for us to survive. I have never missed my pills. Once I took my evening pills Phosiwe was diagnosed with HIV in 2005. Aer ft her diagnosis, late. e Th train was delayed and when I got home it was past she withdrew and experienced a period of extreme grief: 7 already but I took them anyway. I went to the clinic to tell I stayed (inside) for about a week, not saying anything to them what happened. e Th y said it was not bad, because it anyone. I kept on crying. My partner didn’t see me crying was only 20 minutes late. I get on well with the nurses, but because he was always out or was drunk. when people don’t take their treatment properly, they get angry and shout at them. As she recovered from depression, she began to resist internalising the stigma associated with HIV, and to ask for e Th social grant Phosiwe receives because of her HIV status assistance: supports both her and her partner. She also receives financial support from her niece, and has gained a purpose to her life by I was feeling stressed for two months because my partner caring for her niece’s child: didn’t care about me. But I could feel that it was eating me inside. I asked myself why I should worry about him. We My niece plays a huge part in my life. She has asked me all know that HIV is [a sickness] not for animals but for to come and help her in her house, cleaning and doing the humans. Animals have their own illnesses that they worry washing, and she will give me money. My niece is the only about. I told myself that I must start accepting what was person who does something for me now and again. Last time happening to me, and that I would be n fi e. I decided to tell she bought me shoes and earrings. When I’m at [her house], my pastor and his wife. She sent her daughter to me, so that I am at peace. she could go with me to sign [as adherence supporter] for the ARV treatment. Losta Losta (20 years) left school due to illness a year before she Phosiwe disassociates her new ‘good’ identity from the ‘bad’ participated in the study. She had had two children, one of Phosiwe: who died in an accident 2 years prior to the interview. She had I’ve stopped drinking, gh fi ting and being a bully. I don’t need separated from the father of her children, who was physically liquor, as it will ae ff ct my immune system. I just decided to abusive towards her. Losta lost her remaining child to her go to church for spiritual uplim ft ent. parents, she presumes because they felt she was unable to care for him adequately: Her partner denies the possibility that he may be HIV-positive. Phosiwe resists his denial with anger, and rejects his demands to My parents took my child and they are looking aer ft him. My have unprotected sex: siblings all support my child as they are all working. 98 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Losta had decided to test for HIV as she knew many others who other child is studying with support from a government bursary. were infected and were ill. Her response, as she represented it, Her husband died 8 eight years prior to the interview. Aer ft 4 was one of relief: years of poor health, she tested positive for HIV. She received a social grant initially because of her HIV status, but this has You know it was n fi e for me. Being positive didn’t hurt at all. recently been stopped. Before a Th ndiwe received the grant, she I was just happy I knew what the problem was. stayed with her sister. a Th ndiwe’s relatives ostracised her when they learnt of her diagnosis: But she has been unable to tell anyone, either close friends or immediate family, of her diagnosis: My cousin told me my relatives are all laughing at me. I was thinking that they were going to support me but they don’t My mother would shout at me. She doesn’t believe HIV exists want anything to do with me. Nobody was willing to come and she talks badly about people living with it. My father is a to the clinic with me to sign for treatment. I had to beg my quiet person, and doesn’t behave like my mother. I don’t want cousin to do that. to hurt him. I don’t know what would happen to him if I told him. One of my older brothers once told us that if he heard Like Phosiwe, her sister’s children insulted her, ‘saying things like that one of his sisters was HIV-positive, he’d kill her. I realised if I die they won’t come to my funeral because I have AIDS’ – and that my mother and my elder brother would never accept a so she left to stay elsewhere. Her repeated attempts to maintain person who was HIV-positive. a Th t’s why I have decided to contact with her family have failed: keep it to myself. I tried to phone my sister when I was ill but she put the phone Losta has internalised stigma associated with HIV. Her closest down without hearing why I had called. I don’t have any friend had died recently from HIV-related illnesses and relations with my siblings [crying]. Neither my sister nor my complications, yet neither had disclosed to the other: brother care about what is happening to me. It hurts a lot. It’s like they are in America but we all stay in the same area. We used to talk about everything, even about HIV generally, but not about us living with it. a Th ndiwe does not blame herself for this; she asserts that the fault is theirs: She lives alone at her sister’s place, while her sister has moved in with her boyfriend. Her social grant, which she kept secret I don’t know what their problem is. I am not happy with from her family as this would reveal her HIV-positive status, has this. recently been terminated. a Th ndiwe has little other social contact due to her fear of Losta is ambivalent about taking medication: stigma: Sometimes when I don’t feel like taking my treatment, I don’t. I don’t have friends. I think they’d talk behind my back about I can’t take my pills with water, and if I don’t have juice, I my status. simply can’t take them. Old friends have distanced themselves from her, and since Losta consequently has a poor relationship with the health disclosing her status, she has been subject to insults from a workers responsible for supervising her; their perceived lack of neighbour: sympathy means that Losta has not spoken about her lack of social support and other problems: She swears at me each time she sees me and tells everybody about my status. e Th y shout at us when we don’t take our treatment, just like they did today. I wouldn’t be able to say all these things I a Th ndiwe does talk to other patients at the clinic, and she is able have said to you to anyone of them. e Th y are strict with us, to visit a local counsellor whenever she is in need. However, her so we’re scared. emotional distress makes adherence to medication difficult: When I am stressed I forget to take my pills on time. I a Th ndiwe remember maybe aer 30 m ft inutes later. a Th ndiwe (41 years) has completed a computer skills course and Losing her grant, too, has jeopardised her ability to attend the a security-training course, but she is unemployed. She lives in clinic regularly to collect her medication, and so to adhere. e Th a government-provided house with one of her children, whom clinic is some distance, and walking makes her very tired. she suspects of drug abuse and who is also unemployed. Her VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 99 Original Article life through social roles that have value, and this provides Experience of diagnosis, stigma and them with the strength to resist stigma and so maintain their resistance health and well-being. Phosiwe’s ‘new identity’, derived from the We have, through these case studies, illustrated various assistance she is able to provide to her niece by helping with responses to diagnosis – anger, violence, blame (Phanuel), housework and childcare, gives her a secure basis from which to withdrawal, grief and depression (Phosiwe), and avoidance of confront stigma. Julius’ role as a counsellor within the church is others (Losta, a Th ndiwe and Julius). We have shown the cost of strengthened by his HIV status, as he has a common experience disclosure: neglect (Thandiwe), verbal abuse (Phanuel, Paulinah, with many of those who turn to him for support, and therefore a Th ndiwe, Phosiwe), accusations and blame (Paulinah), and the confidence to insist health workers treat him with respect. physical abuse (Losta, Paulinah), reactions caused by fear of Losta, in contrast, has no role within her family, as her parents a potentially fatal disease, betrayal and the disappointment of have taken away the responsibility of looking aer ft her child, fractured relationships, reflecting the associated stigma. and she is unable to confront abusive health workers. Responses to stigma varied from passive acceptance to direct confrontation. Losta internalised a sense of shame that she Motivational systems would bring to the family. She felt unable to confront her mother Research on social stress has illustrated that people who or brother, and wished to protect her father from public shame consider themselves to be part of a larger whole, within which associated with HIV, and so had not disclosed to anybody. the needs of its members are equally important (an ‘eco-system’ a Th ndiwe, in contrast, despite ostracism by her family and motivation), are more likely to disclose, and to experience greater considerable insults, resisted the idea of fault or responsibility psychological well-being from doing so. Individuals more (resistance thinking). Phanuel uc fl tuated between strategic focused on their own needs (with an ‘ego-system’ motivation) avoidance and speaking out. Although he challenged the negative are less likely to disclose and less likely to benefit when they labels expressed by his friends (speaking out), he felt unable to do disclose (Garcia & Crocker, 2008). But as these narratives disclose his status to the same friends (strategic avoidance). indicate, an event such as diagnosis with HIV is likely to shift an When others in the community knew of his status, he decided individual’s attention towards his or her own needs (ego-system that the family should move to an area where they were not motivation). Phosiwe, for instance, withdrew from social contact known (strategic avoidance). Paulinah, in contrast, revealed her for several weeks; Phanuel denied his status, and physically and status to her neighbour in order to confront negative labelling verbally abused his wife. With the support of select individuals, (active resistance), and as a result benefited from access to a both Phanuel and Phosiwe were able to express their emotions, group of HIV-positive people with whom to share experiences. make sense of them, and switch to more problem-focused/ Phosiwe resisted negative labels: ‘HIV is a disease not of animals outward looking strategies to care for their health, and draw but of humans’ – and was publicly open about her status, happy meaning from key social relationships. Phanuel drew on the to tell her story to anyone who would listen (activism). support of his wife and a counsellor, became focused on the need to look aer ft his family, and made strategic decisions as to Multiple disadvantaged and new identities when disclosure would lead to additional support rather than Gendered oppression is a common theme in these narratives: condemnation. Drawing on the support of her niece, Phosiwe Losta’s elder brother had reportedly threatened to kill any of decided to be open about her illness to prevent it ‘eating her his sisters should they be HIV-positive; Phosiwe’s first husband soul’. In contrast, Losta’s social marginalisation, and possibly started another relationship when Phosiwe could no longer have her relative youth, meant she had few resources with which to children; Phanuel was physically abusive of his wife Paulinah. adjust to her status. Instead, in order to cope, she rendered the In some cases the experience of more than one disadvantaged diagnosis meaningless: identity created greater levels of marginalisation, as in Losta’s You know it was n fi e for me. Being positive didn’t hurt at all. case (with gendered oppression from her boyfriend and her I was just happy that I now knew what the problem was. brother, compounded by her HIV-positive status). Yet despite desertion by her husband, neglect and stigmatising behaviour by Yet her difficulties in taking the medicine suggest otherwise. close family members, Phosiwe was able to adhere to treatment. Rather than a static categorisation of individuals (with e Th effects of multiple marginalised identities appear not to either eco- or ego-system motivation), these narratives show compound necessarily (Meyer, Schwartz & Frost, 2008), and individuals switching between inward and outward focus, with so the negative impact of stigma, resulting in delayed access to a minimum set of social resources being necessary to enable an care and poor adherence to treatment, is not always predictable. outward focus. This in turn can yield further support. Rather, individuals find meaning in certain domains of their 100 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Discussion Social support Re-working the conceptualisation of stigma Social support played a crucial role in many of the processes Stigma has been defined as ‘a deeply discrediting attribute’ that described above. Social support provided by family members reduces a ‘whole or usual person to a tainted or discounted had both practical and emotional dimensions. Julius’s family, for one’ (Goffman, 1963, pp.12-13). Stigma is not simply negative instance, cared for him physically when he was ill, leading him attributes, culturally constructed, mapped on to some individuals to reflect that he wouldn’t have ‘made it’ without them. Phosiwe, by others, but requires a language of relationships between in contrast, lacked practical assistance and suffered considerable ‘legitimate’ and ‘spoiled’ identities. It has to be ‘conceptualised distress as a result. Social support was also critical to the ability as a social process, understood in relation to broader notions of of these participants to build a new, positive identity. Julius’s power’ (Parker & Aggleton, 2003, p.16). ‘Legitimate’ identities personal confidence and his role within the church built upon are those accepted by cultural norms, introduced by the the constant support of his family and specific church elders. dominant groups or institutions of society; ‘spoiled’ identities e Th social support of a counsellor enabled Phanuel to see the do not conform or have in some way broken the norms. benefit of accepting his status, and to change his behaviour Although stigma is a social process, there is disagreement as towards his wife. Phanuel’s and Paulinah’s mutual support, to how inevitable discrimination is as an outcome. Link and and the support of other family members, provided them Phelan (2001) include discrimination as part of the definition with a buttress against insults from friends and neighbours. In of stigma, and Holzemer’s model and description encapsulates contrast, a Th ndiwe, rejected by her family despite her attempts stigma as a one way process (stigma triggers, stigmatising to enlist their support and her access to counsellor, was unable behaviours, types of stigma, and stigma outcomes) (Holzemer, to respond to insults and verbal abuse of her neighbours. Losta’s Uys, Makoae et al., 2007). Deacon (2006) distinguishes the social isolation from her family and friends, and lack of social support, process of othering, blaming and shaming, from the outcomes hindered her ability to disclose her status even to her closest of this process (discrimination). She argues that poorer groups friend, or to express her emotions associated with her HIV- can stigmatise wealthier and more powerful groups, even if positive status. the attitudes cannot be enacted as discrimination. This can e Th lack of stable accommodation, experienced by Losta, be argued more strongly. e Th data presented here have shown a Th ndiwe and Phosiwe, is the outcome of unstable family that the marginalised engage in everyday acts of resistance and relations and poverty All three participants spent time negotiation over the labelling of HIV identities, and creation dependent for food and accommodation on people with of new HIV-positive identities. For example, by asserting their stigmatising attitudes. es Th e circumstances exacerbate rights to respectful treatment by health workers, participants vulnerability, hindering both disclosure and ability to engage in are de-linking stigma and discrimination. more active resistance strategies. In addition, both a Th ndiwe and Losta were penalised by the health system as a result of their Differing strategies of resilience and lack of social support: a Th ndiwe had to beg a cousin to sign resistance as her treatment supporter so she could obtain treatment, and e Th existing literature on resistance strategies in the face of health workers’ verbal abuse of Losta is the result not only of stigma describe similar strategies to those identified in this paper. her poor adherence but also her social isolation, exacerbating In an analysis of South African women’s narratives of living the situation further. with a spoiled identity, Rohleder and Gibson (2006) describe Government grants play a crucial role in bolstering social how participants transfer negative social representations associated with HIV onto others (‘splitting off ’), just as Paulinah support from family and neighbours, providing financial access to basic requirements such as rent, food and clothing for the criticises those who do not test. In her description of women’s resistance to stigma associated with childlessness, Riessman unemployed, and meeting the costs of transport to the clinic, so facilitating adherence. Interviewees who were coping (2000, p.130) argues that resistance requires that ‘women’s agency be palpable … where women advocated for themselves relatively well (Phanuel, Julius and Phosiwe) were all receiving a government disability grant. a Th ndiwe’s grant had been and their marriages’. This might include refusing to internalise a negative label (resistant thinking), taking a stand in an terminated and she was struggling to obtain sufficient funds to travel to the clinic to obtain her medication, and so adherence interaction (speaking out or active resistance), or seeking public discussion or confrontation (activism), which is closely aligned was a problem. Losta had also just lost her grant. Both Julius and Phosiwe expressed extreme distress at the prospect that to the strategies used by others engaged in social movements (Poindexter, 2005). On the other hand, strategic avoidance, their grant might be discontinued. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 101 Original Article such as hiding one’s medication or avoiding social contexts in identities are generated (or denied) as a result of being valued which confrontation might occur, is more akin to resilience and or supported by others, within the immediate family and in the strategies of survival rather than resistance (Kanuha, 1999). As broader social arena. we have illustrated, individuals use a range of strategies, oen ft People living with HIV have to negotiate relationships that switching between active resistance and passive avoidance. have been fractured by a sense of betrayal and sexual jealousy Kahn (2004) argues that experiences of stigma and responses associated with a potentially fatal, sexually transmitted illness. are shaped by locally specific factors. In South Africa, the uid fl In such situations they resort to various modes of engagement: and unstable structure of poor families, oen ft straddling urban problem-focused responses that are active and confronting, and rural locations due to pre- and post-apartheid migration associated with better self-reported health status, psychological patterns, results in complex, and oen ft weak, social networks. resilience and self-esteem (Miller & Cohen 2001; Remien, Rabkin es Th e circumstances are very similar to those described by & Williams, 1992); passive responses including avoidance and participants in this study. In such social conditions disclosure is withdrawal as way of self protection (Lazarus & Folkman, 1984); less likely to occur within a small stable group, and the associated and maladaptive responses which include ‘focusing on and vulnerability limits the resistance and resilience strategies venting emotions’ (Carver, Scheier & Weintraub, 1989). e Th available to people living with HIV/AIDS (PLWHA), as seen in narratives recounted here have shown that modes of engagement the experience of Losta, Phosiwe and Thandiwe above. may change over time, switching away from the initial inward perspective, inevitable aer ft diagnosis, to an outward/problem- focused response. However, not only is this shift assisted by a Managing stigma in the context of coping degree of social support, but it is more likely to yield further with an incurable disease social support. Phosiwe’s or Paulinah’s pro-active responses to e Th particular context under consideration here – stigma isolation (Phosiwe) and a neighbour’s stigmatising comments associated with disease, rather than race (Howarth, 2006) or (Paulinah) led to further positive social support. childlessness (Riessman, 2000) – means that responses by the stigmatised are part of a broader set of strategies individuals Implications for interventions use to cope with illness. To understand the processes at work in individuals’ lives, resistance to stigma should not be considered In efforts to reduce stigma strategies include counselling and support groups aimed at empowerment at the interpersonal in isolation. Coping with a life long illness oen ft involves a search for meaning, attempts to regain mastery or control over level; patient centred approaches within organisations; and rights-based approaches at community and government levels the illness, and efforts to maintain self-esteem (Becker, 1997; Charmaz, 1991; Frank, 1995; Taylor, 1983). er Th e is a need to (Ehiri, Anyanwu, Donath, Kanu & Jolly, 2005; Heijnders & Van Der Meij, 2006). A review of intervention studies (aimed ‘create order’ through generating a new identity that includes the illness (Kralik, Koch, Price & Howard, 2004). In a study primarily at increasing tolerance amongst general populations, increasing willingness of health staff to treat PLWHA, and of the narratives of 12 South African women, Soskolne (2003) describes how participants forge a positive self-identity in the improving ability of PLWHA to cope with stigma) concluded that the impact was small and short term (Brown, MacIntyre & face of HIV as a defence against underlying anxieties. e Th author shows how participants vacillated through conflicting notions Trujillo, 2002). of disempowerment and empowerment, purity and contagion, Often encompassing different components, social movements, strength and weakness, death and continuity, in attempts to cope supported by government action with a rights based approach with anxiety and to resist stigma. Similarly, in an analysis of to health, can build communal resistance to stigma, structurally the experiences of 34 British HIV-positive participants, Squire changing the context in which both individuals and communities (1999, p.109) shows how the ‘self in the interview operates, operate as they respond to HIV and AIDS (Heijnders & Van not as a consistent reflexive project, but as an occasional, Der Meij, 2006). This has been the aim of the Treatment Action situated resistance’. e Th narratives interpreted here similarly Campaign (TAC) in South Africa (with its focus on the right to show that maintaining a new identity is intertwined with treatment, and its ‘living positively’ campaign) (Robins, 2005), resistance, resistance that is sometimes active and assertive, but and of similar social movements in Brazil, Australia and the US at times takes more passive forms of resilience. e Th narratives (Achmat & Simcock, 2007; Altman, 1994; Epstein, 1996). also illustrate that multiple disadvantaged identities do not necessarily compound one another, but are derived from the Conceptualisation of stigma as a social process, framed by social context, and negotiated in complex and varied ways. New broader notions of power, makes clear the limitations of 102 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original interventions designed to provide more information about of income, or financial support from friends and relatives), a particular illness to ‘put right’ incorrect beliefs, to increase physical (such as accommodation), and social resources (such tolerance by increasing empathy, or to reduce anxiety or fear as emotional support and physical care while sick). If a person on the part of the broader population, without confronting is dependent for any of these resources on family members with underlying social processes ( Jewkes, 2006; Parker & Aggleton, stigmatising attitudes, their ability to draw on these resources 2003; Reidpath, Chan et al., 2005; Varas-Diaz et al., 2005;). is constrained. Finding a new role also requires switching to es Th e strategies need to be complemented by others built on an outward, problem-solving focus, itself requiring emotional an understanding of the factors that facilitate the agency of support. Often a problem-solving focus and a new role can yield people to neutralise or resist stigma. Reidpath and colleagues further support, leaving those with insufficient initial support (Reidpath, Chan et al., 2005) argue that there is a fundamental trapped in social isolation. need for societies to value individuals and groups, in order to Resistance to stigma is enabled both by the depth and breadth provide a basis to determine group membership and allocation of social support available. In poor urban communities in South of social and material resources As a result, interventions need to Africa, from which these participants come, both material and increase the social value of individuals, assisting the stigmatised social resources are limited due to poverty, and exacerbated by to overcome the barriers to accessing resources, such that they unstable family relations, and broad, but weak social relations. are able to reciprocate, and so be of ‘value’ within a community. Positive living is closely associated with better health outcomes Two examples provide evidence of this. Firstly, a project (Douaihy & Singh, 2001), and mechanisms of support to people designed to assistance farmers in West Africa ae ff cted by river to resist stigma appears to be an important factor in this. Since blindness, enabled them to continue farming despite blindness, the agency required to resist stigma is co-produced (requiring and so were no longer stigmatised and excluded from the social support), it is the socially marginalised who have fewer community (Lewis, 2003). Secondly, an intervention to reduce opportunities to demonstrate their social value, who face the internalised stigma amongst sex-workers in India developed greatest risk of transmission, re-infection and failure to adhere the capacity of participants to deal with police raids, negotiate to medication, and so require particular support from the health release aer ft arrest, and to run an NGO to support other sex- sector or community groups. workers. e Th result was an improved sense of entitlement due to their contribution to a section of society (Cornish, 2006). Acknowledgements This present paper has also shown that identities or roles with e Th research would not have been possible without the social value are closely linked to resistance. os Th e participants participants who shared their stories of the difficulties of living able to find a meaningful social role (child care, counselling, with HIV. We also wish to acknowledge Harry Nyathela, who supporting ones’ family) were able to rebuild their self-esteem conducted and translated the Sesotho interviews. e Th research and were more likely to resist stigma, rather than using was funded by the Canadian International Development Agency avoidance or passive strategies. Interventions that facilitate the (CIDA). development of meaningful social roles by the stigmatised are likely to increase their social ‘value’, enable social engagement References between the stigmatised and stigmatising, as well as facilitating Achmat, Z. & Simcock, J. (2007). 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Stigma, identity and resistance among people living with HIV in South Africa

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Taylor & Francis
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Copyright Taylor & Francis
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1813-4424
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1729-0376
DOI
10.1080/17290376.2009.9724937
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Abstract

AIDS-related stigma can cause delays in testing, poor treatment adherence, and greater numbers of new infections. Existing studies from low- and middle-income countries focus on the negative experiences of stigma, and few document resistance strategies. In this article we document the diverse journeys of people living with HIV in South Africa, through ill health, testing, disclosure, and treatment, and their responses to stigma. e Th research questions of focus are: Why are some able to resist stigma despite poverty and gendered oppression, whereas others are not? Why are some people able to reach closure, adapting to diagnosis, prognosis and finding a social context within which they resist stigma and can live with their illness? e Th illness narratives reported here show that the ability to resist stigma derives from a new role or identity with social value or meaning. Generation of a new role requires resources that are limited due to poverty, and exacerbated by unstable family relations. People who are socially marginalised have fewer opportunities to demonstrate their social value, face the greatest risk of transmission, re-infection and failure to adhere to medication, and require particular support from the health sector or community groups. Keywords: stigma, resistance, identity, HIV/AIDS, South Africa. Résumé La stigmatisation associée au SIDA peut entraîner des retards de dépistage, une mauvaise adhésion au traitement et un nombre accru de nouvelles infections. Les études disponibles des pays à faible revenu et à revenu moyen se concentrent sur les expériences négatives associées à la stigmatisation, et peu abordent les stratégies de résistance adoptées. Dans cet article, nous étudions les différentes expériences de personnes vivant avec le VIH en Afrique du Sud, dès le moment où celles-ci tombent malades, se font dépister, divulguent leur état sérologique, où elles se font traiter, et leur réponse à la stigmatisation. Les principales questions que pose cette étude sont les suivantes: Pourquoi certaines personnes sont-elles capables de résister à la stigmatisation en dépit de la pauvreté et de l’oppression basée sur le genre, alors que d’autres ne le sont pas ? Pourquoi certaines personnes sont-elles capables de tourner la page, de s’adapter au diagnostic, au pronostique et de trouver un contexte social dans lequel elles peuvent résister à la stigmatisation et vivre leur maladie ? Les récits de la maladie rapportés dans cet article montrent que la capacité à résister à la stigmatisation découle d’un nouveau rôle ou d’une nouvelle identité associée à une valeur sociale ou à une signification. La création d’un nouveau rôle nécessite des ressources limitées du fait de la pauvreté, exacerbée par des relations familiales instables. Les personnes marginalisées d’un point de vue social disposent de moins d’opportunités de démontrer leur valeur sociale, et sont confrontées aux risques les plus élevés de transmission, de réinfection, et d’incapacité à suivre le traitement, et ont besoin d’un suivi spécifique par le secteur médical ou les groupes communautaires. Mots clés: Stigmatisation, résistance, identité, VIH/SIDA, Afrique du Sud. Jane Goudge, PhD, is a Senior Research Officer at the Centre for Health Policy, School of Public Health at the University of the Witwatersrand, Johannesburg. She joined the Centre in 1998 and since then has conducted research on a range of health policy and system issues including access to health care and why people drop out of treatment, the ao ff rdability of care, social protection, and health care financing. Lenore Manderson, PhD, is Professor of Medical Anthropology in the Faculty of Medicine, Nursing and Health Sciences, and Faculty of Arts, Monash University, Australia, and an Honorary Professor in the School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, South Africa. Her research spans questions of social exclusion, inequality, diversity and chronic health problems in Australia, Southeast Asia and South Africa. She is a Fellow of the Academy of Social Sciences in Australia and Fellow of the World Academy of Art and Science. Bulelwa Ngoma (MA Psychology) is a researcher at the Centre for Health Policy. Her areas of research include: understanding why patients drop out of ART programmes, and improving the provision of chronic care for ART patients; self-management in chronic diseases – patient knowledge, perceptions and processes; operationalising health as a human right and implementation of the Patient’s Rights Charter in the health sector; non-governmental organisations working with people living with HIV/AIDS in Gauteng province; the social diagnostics of stroke-like symptoms and healers, doctors and prophets in Agincourt. Helen Schneider (MB ChB, MMEd) is Associate Professor at the Centre for Health Policy and Professor Extraordinarius, University of the Free State. She leads a programme of research health policy and systems with a particular focus on HIV/AIDS. Correspondence to: jane.goudge@gmail.com 94 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Letter by Nokuzola Mk fi i: ‘ I can no longer continue with life. In this article, drawing on research conducted in Gauteng i Th s community is laughing at me, humiliating me and my Province, South Africa, we document the diverse journeys children because they say I have AIDS.’ e Th bodies of Mk fi i and of people living with HIV aer ft the national roll-out of ARV her four children were discovered in a e fi ld near her home. treatment, through ill health, testing, disclosure, and treatment, and their responses to stigma. Using the illness narratives of Daily Dispatch, Eastern Cape, South Africa 8 Aug 2008 v fi e participants as an heuristic device, we explore why some people are better able than others to develop new positive She was always saying bad things about people with HIV, but self-identity, and why some are able to resist stigma, despite I told her it would be nice if all the people who talked badly poverty and gendered oppression, while others are not. We also about HIV showed us their HIV-negative results. explore why stigmatised individuals choose a particular mode Paulinah, aged 33 of engagement with others, and the effects of this on their ability to resist stigma. Why are some people better able than others to adapt to diagnosis and prognosis? Introduction AIDS-related stigma has highly damaging consequences, limiting the impact of public health interventions through delays Methods in testing and poor treatment adherence. e Th result is a greater e Th data derive from a study on the health system constraints number of new infections, poorer health and, occasionally, as and opportunities to scale up the ARV programme in South with Nokuzola Mfiki, suicide (Mawar, Saha, Pandit & Mahajan, Africa. One component of this study was to explore the 2005; Skinner & Mfecane, 2004). A considerable literature relationship between patient factors, health system factors, documents the experience of stigma (Duffy, 2005; Reidpath, and adherence outcomes. Structured exit interviews (N=713) Brinjnath & Chan, 2005; Simbayi, Kalichman, Strebel, Cloete, were conducted with randomly selected patients at four public Henda & Mqeketo, 2007; Varas-Diaz, Serrano-Garcia & Toro- facilities in Gauteng Province. es Th e participants were asked Alfonso, 2005), measuring levels of stigma and resulting health whether they were willing to be interviewed again as part of an outcomes (Kalichman, Simbayi, Jooste et al., 2005; Mills, 2006; in-depth study, reported here. os Th e who agreed were grouped Nyblade, 2006). However, there is insufficient understanding according to gender and self-reported adherence. Sixteen of the complex pathways of experience that generate differing participants for the in-depth interviews were then selected responses including resistance to stigma (Garcia & Crocker, on a random basis from these groups. Although the original 2008; Rohleder & Gibson, 2006; Soskolne, 2003; Squire, 1999; intention was to include equal numbers of fully adherent and Whittaker, 1992). We need to understand better the social and poorly adherent participants, due to the difficulty of tracing economic circumstances and resources, in different settings, patients, only two were poorly adherent, both women. People to help people with HIV to neutralise stigma and develop new diagnosed with HIV, but who were not taking treatment or who identities (Cornish, 2006; Jewkes, 2006; Reidpath, Chan & had refused treatment, were not included in the study. (We have Gifford, 2005). since initiated a second study with patients who have withdrawn from an ARV treatment programme.) As is true for studies in industrialised settings, existing studies from low- and middle-income countries predominately focus Study participants were interviewed twice over 6 months. e Th on the experience of HIV-related stigma, with less attention to first interview elicited an illness narrative, an open-ended people’s resistance strategies (Dageid & Duckert, 2008; Makoae, self-determined account of their illness. Each participant Greeff, Phetlhu, et al., 2008; Poindexter, 2005; Rohleder & described the history of their illness, testing, adjustment to Gibson, 2006; Soskolne, 2003). In sub-Saharan Africa, studies diagnosis, experience of disclosure, interaction with existing of HIV-related stigma are predominately among populations social networks, the development of new ones, impact of HIV where ARV treatment is not easily or freely available (Campbell, on their livelihood, and interaction with health workers. e Th Foulis, Maimane & Sibiya, 2005; Kahn, 2004; Lindsey, Hirschfeld second interview explored these issues further, with the 6- & Tlou, 2003; Olenja, 1999; Pool, Nyanzi & Whitworth, 2001; month interval allowing documentation of further adjustment. Rohleder & Gibson, 2006). Although control of symptoms All interviews were conducted in the participant’s preferred will not remove stigmatising processes (Parker & Aggleton, language, either by Bulelwa Ngoma (isiXulu), or by both Harry 2003), stigma may lessen where treatment is available (Castro Nyathela and Bulelwa Ngoma if the participant’s preferred local & Farmer, 2005), and strategies to resist stigma may be more language was Sesotho. Harry Nyathela, publicly open about his possible as a person regains his/her physical health. own HIV-positive status, is an experienced HIV counsellor. All interviews were recorded, translated and transcribed verbatim. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 95 Original Article e Th narrative approach allowed us to explore how participants We have used pseudonyms in this article, as in all publications, made sense, retrospectively, of the diagnosis and prognosis of to protect the anonymity of participants. HIV and the events that followed (Kleinman 1988; Mason 2006; Mohatt, Plaetke, Klejka et al., 2007; Riessman 1993). Narratives Results of illness and other dramatic events are oen ft structured around Illness narratives a familiar trajectory, characterised by narrative closure. e Th Julius shared cultural framework of narrator and interviewer allows On leaving school, Julius (33 years) trained and practised as a for exposition, analysis, confirmation and concordance in spiritual healer within the Church of Saint John (pseudonym interpretation. Given the chronicity of conditions such as HIV, – Christian fundamentalist). Through this church, he joined a like other lifelong diseases, closure refers not to the resolution traditional healers’ organisation, participating in a programme (or cure) of the illness, but to adaptation to diagnosis, prognosis in which nurses taught its members how to look aer ft people and social meaning. Frank (1995) differentiates the strategies who have HIV/AIDS and TB. Aer ft a long period of illness, of chronic conditions in terms of quest (the search for cure), Julius tested and was diagnosed as seropositive, with a CD4 chaos (in which there is no medical or personal resolution), and count of 16. At this point, he started ARV treatment. His family, restitution, wherein the narrator finds a personal logic to their who had cared for him during his illness, were very supportive illness and its trajectory. when they learnt of his diagnosis: e Th in-depth interviews were analysed with the assistance of My mother and younger sister would wash my clothes, cook ATLAS.ti (version 5.0), with passages coded using both a priori me food, clean where I slept, and did everything for me. Being and emergent codes. e Th a priori codes were determined by the accepted by my family has meant a lot to me. I don’t think I research questions, and referred mostly to different points in would have made it without them in my life. the participant’s journey aer ft diagnosis. e Th emergent codes mostly referred to different types of experience and responses Since recovering his health, with the support of his family and reported by participants. e Th a priori code ‘identity’ refers members of the church, Julius has been able to continue actively to the notion of finding a meaningful role, i.e. a role that has to provide practical and spiritual support to others. His HIV- social value. ‘Adherence’ refers to self-reported adherence to positive status has strengthened this role: medication, including consistency of timing of medication. Three researchers read the transcripts: one coded each narrative, Some people at church come to me to seek for advice. I disclose the others reviewed and validated the emerging themes through to them so that they know that they are not on their own and discussion. Given the analytical importance of the journey I encourage them to do things correctly. i Th s also makes the through the experience of illness and stigma, from quest, chaos, discussion flow because we are all on the same platform. through to restitution (Frank 1995), the narratives needed to be From this base, Julius has the confidence to engage with health presented as whole stories. Unable to include all the narratives, workers as equals, reprimanding those who do not treat him the research team decided to include contrasting narratives, with respect: thereby illuminating a greater range of experience. Once a network of the conceptual categories had been generated, one Some shout at us without waiting for any explanation. I don’t researcher identified particular narratives that illustrated the key like to argue, but if it carries on, I tell her if she doesn’t wait categories. Where possible, the selection of the cases favoured for my explanation I will report her to the sister in charge. those narratives that provided the richest and most illuminating descriptions of the individual’s journey. Several participants, His confidence, derived from his social support, also helps him less skilled story tellers, provided briefer descriptions of events to view his treatment positively and to adhere to the regimen: and their own emotions, with less explanation as to why they I always take my treatment on time because I know the responded or acted as they did, making interpretation more consequences of not doing so. If it were to happen that I miss difficult. One researcher made the initial selection of cases; taking the tablets, I think it would be easy for me to tell the this decision was reviewed by others in the research team and nurses and doctors, so that they can help me not to repeat differences of opinion were resolved through discussion. Five this in future. stories are presented below. Julius’s only source of income is a social grant from the Ethical clearance was obtained from the University of the government, provided to those disabled by chronic illness. He Witwatersrand. All participants gave their informed consent. 96 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Article Original depends on this to meet his basic needs, including the cost of Both Phanuel and Paulinah have spoken out during stigmatising transport to hospital to collect his medication: conversations: e Th disability grant helps me to look ae ft r myself, allowing me Phanuel: When my friends talked negatively about HIV, I’d to do things like buying clothes, assisting around the house, tell them it didn’t seem right when they haven’t been tested getting transport to the hospital. If they cut mine [grant], it themselves. We would then start a huge argument and they’d would really be a huge problem. I am not working. I really turn nasty. I decided not to tell my friends about my status. don’t know how I would survive without it. Phanuel has lost friends as a result of this decision: e Th signic fi ance of the grant for Julius becomes clear when he I decided to do away with them and to focus on my family, criticises HIV support associations: to look ae ft r my wife, child and HIV. I don’t have friends I was very ill. I went to a support group and asked them to anymore. come to my house to talk about issues related to this illness. In contrast, Paulinah was open about her own status, as a way of I waited and waited but they never came, so I stopped going resisting stigma: there. I also went there to ask for a food parcel. e Th y told me that because I was getting a disability grant, I couldn’t get it. I decided to be open about my status with my neighbour. She i Th s didn’t go down well with me because I knew that others was always saying bad things about people with HIV, but I told received food parcels even though they were getting a grant. her it would be nice if all the people who talked badly about HIV showed us their HIV-negative results. But none of those Julius now has no links with HIV support organisations and, as a who talk badly have been tested. Ae ft r this, it was n fi e, she further means of self-protection, he limits his social engagement doesn’t judge (me). to the safe environment of the church: By being open about her status, Paulinah established friendships I don’t have friends. e Th people that I regard as my friends are with other HIV-positive people: my elders at church. My neighbour now has other friends who are also HIV positive, Phanuel and Paulinah so when they come to visit her I sometimes go there. It is very healing to talk with other people who are in the same situation. Phanuel (35 years) le ft school at 16 years of age, and worked as You feel accepted and you realise that you’re not on your own. a petrol garage attendant. He and Paulinah, his wife (33 years), have three children. Ae ft r one child was repeatedly ill, Phanuel Even so, the attitudes of others in their community have forced and Paulinah tested for HIV. Both were positive. Phanuel was also Phanuel and his family to move to another area where they are diagnosed with TB and stopped work. His initial response to his unknown: HIV-positive status was one of denial and anger: I could see our neighbours knew about our status because of Phanuel: I became angry with my wife, and started g fi hting the car from the support group that used to drop food parcels with her. She also blamed me for sleeping around. at our house …we decided to move from that community to start a new life (Phanuel). Paulinah: He was beating me. Phanuel is also not able to talk about HIV with his extended Phanuel: I drank alcohol a lot during that time, trying to forget family – his mother, he explained, was ‘not comfortable’ – nor at about the situation. e Th only thing I kept thinking about was his church. He and Paulinah decided to tell their pastor about death. I was losing hope in life because my child had passed their status, but because people at church ‘talk negatively about away. i Th s carried on for a long time. HIV’, they decided to tell no-one else. e Th hospital waiting room, A counsellor was close enough to the couple to be able to however, is a social space where Phanuel can talk freely: intervene: I have met people in the hospital, but we don’t keep in touch as e Th re was a nurse at the clinic who knew our situation. She friends would. We don’t judge each other. We talk a lot about made me realise there is still life, and I must focus on getting AIDS and this is a very huge relief. better, and on my family. She used to come to our house to talk. Phanuel is working again, attends church regularly, and sees his Ae ft r the sessions with her I came to be at peace with my wife immediate family, but no longer sees his friends. and our situation. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 97 Original Article When he is drunk, he talks about HIV and insists that he Phosiwe isn’t HIV-positive. He makes me angry. He doesn’t want to go Phosiwe is 52 years old and was a factory employee. She had and have the test, but two of his girlfriends have passed away. two children, but both died in the 1980s. For medical reasons, When he is drunk he wants to sleep with me without using a she had a hysterectomy in 1990. Her husband, who was not condom and I don’t allow that to happen. the father of her children, started an affair with another woman, who came to live with Phosiwe and her husband. Soon Phosiwe is open about her status. She does not hide her need to aer ft wards, her husband insisted Phosiwe leave. Forced from take medication, and actively resists stigmatisation: her home, Phosiwe stayed intermittently with her sister and an I am not scared of talking about HIV. I tell anybody who aunt, until she felt overwhelmed by their disrespect and insults, wants to listen, at church, in the train, anywhere. I don’t and decided to rent her own room. In 2001 she was admitted to want this to have a negative effect on my soul. er Th e are hospital with TB of the spine: those who still stigmatise. Last week a lady who I know saw I suer ff ed a lot because I was worrying about where I was me drinking my treatment. She gave a funny look, and I going to stay [crying]. My boyfriend asked a lady who we was, like, I don’t care about you; as long as I am taking my know to come and stay with me, so she could help me with treatment on time. the things that needed to be done. He couldn’t do all the things Phosiwe adheres to her treatment, and as a result benefits from himself as he was in and out of jail. He was a shoplier ft and a good relationship with the health workers: he was caught. He was trying to get money for us to survive. I have never missed my pills. Once I took my evening pills Phosiwe was diagnosed with HIV in 2005. Aer ft her diagnosis, late. e Th train was delayed and when I got home it was past she withdrew and experienced a period of extreme grief: 7 already but I took them anyway. I went to the clinic to tell I stayed (inside) for about a week, not saying anything to them what happened. e Th y said it was not bad, because it anyone. I kept on crying. My partner didn’t see me crying was only 20 minutes late. I get on well with the nurses, but because he was always out or was drunk. when people don’t take their treatment properly, they get angry and shout at them. As she recovered from depression, she began to resist internalising the stigma associated with HIV, and to ask for e Th social grant Phosiwe receives because of her HIV status assistance: supports both her and her partner. She also receives financial support from her niece, and has gained a purpose to her life by I was feeling stressed for two months because my partner caring for her niece’s child: didn’t care about me. But I could feel that it was eating me inside. I asked myself why I should worry about him. We My niece plays a huge part in my life. She has asked me all know that HIV is [a sickness] not for animals but for to come and help her in her house, cleaning and doing the humans. Animals have their own illnesses that they worry washing, and she will give me money. My niece is the only about. I told myself that I must start accepting what was person who does something for me now and again. Last time happening to me, and that I would be n fi e. I decided to tell she bought me shoes and earrings. When I’m at [her house], my pastor and his wife. She sent her daughter to me, so that I am at peace. she could go with me to sign [as adherence supporter] for the ARV treatment. Losta Losta (20 years) left school due to illness a year before she Phosiwe disassociates her new ‘good’ identity from the ‘bad’ participated in the study. She had had two children, one of Phosiwe: who died in an accident 2 years prior to the interview. She had I’ve stopped drinking, gh fi ting and being a bully. I don’t need separated from the father of her children, who was physically liquor, as it will ae ff ct my immune system. I just decided to abusive towards her. Losta lost her remaining child to her go to church for spiritual uplim ft ent. parents, she presumes because they felt she was unable to care for him adequately: Her partner denies the possibility that he may be HIV-positive. Phosiwe resists his denial with anger, and rejects his demands to My parents took my child and they are looking aer ft him. My have unprotected sex: siblings all support my child as they are all working. 98 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Losta had decided to test for HIV as she knew many others who other child is studying with support from a government bursary. were infected and were ill. Her response, as she represented it, Her husband died 8 eight years prior to the interview. Aer ft 4 was one of relief: years of poor health, she tested positive for HIV. She received a social grant initially because of her HIV status, but this has You know it was n fi e for me. Being positive didn’t hurt at all. recently been stopped. Before a Th ndiwe received the grant, she I was just happy I knew what the problem was. stayed with her sister. a Th ndiwe’s relatives ostracised her when they learnt of her diagnosis: But she has been unable to tell anyone, either close friends or immediate family, of her diagnosis: My cousin told me my relatives are all laughing at me. I was thinking that they were going to support me but they don’t My mother would shout at me. She doesn’t believe HIV exists want anything to do with me. Nobody was willing to come and she talks badly about people living with it. My father is a to the clinic with me to sign for treatment. I had to beg my quiet person, and doesn’t behave like my mother. I don’t want cousin to do that. to hurt him. I don’t know what would happen to him if I told him. One of my older brothers once told us that if he heard Like Phosiwe, her sister’s children insulted her, ‘saying things like that one of his sisters was HIV-positive, he’d kill her. I realised if I die they won’t come to my funeral because I have AIDS’ – and that my mother and my elder brother would never accept a so she left to stay elsewhere. Her repeated attempts to maintain person who was HIV-positive. a Th t’s why I have decided to contact with her family have failed: keep it to myself. I tried to phone my sister when I was ill but she put the phone Losta has internalised stigma associated with HIV. Her closest down without hearing why I had called. I don’t have any friend had died recently from HIV-related illnesses and relations with my siblings [crying]. Neither my sister nor my complications, yet neither had disclosed to the other: brother care about what is happening to me. It hurts a lot. It’s like they are in America but we all stay in the same area. We used to talk about everything, even about HIV generally, but not about us living with it. a Th ndiwe does not blame herself for this; she asserts that the fault is theirs: She lives alone at her sister’s place, while her sister has moved in with her boyfriend. Her social grant, which she kept secret I don’t know what their problem is. I am not happy with from her family as this would reveal her HIV-positive status, has this. recently been terminated. a Th ndiwe has little other social contact due to her fear of Losta is ambivalent about taking medication: stigma: Sometimes when I don’t feel like taking my treatment, I don’t. I don’t have friends. I think they’d talk behind my back about I can’t take my pills with water, and if I don’t have juice, I my status. simply can’t take them. Old friends have distanced themselves from her, and since Losta consequently has a poor relationship with the health disclosing her status, she has been subject to insults from a workers responsible for supervising her; their perceived lack of neighbour: sympathy means that Losta has not spoken about her lack of social support and other problems: She swears at me each time she sees me and tells everybody about my status. e Th y shout at us when we don’t take our treatment, just like they did today. I wouldn’t be able to say all these things I a Th ndiwe does talk to other patients at the clinic, and she is able have said to you to anyone of them. e Th y are strict with us, to visit a local counsellor whenever she is in need. However, her so we’re scared. emotional distress makes adherence to medication difficult: When I am stressed I forget to take my pills on time. I a Th ndiwe remember maybe aer 30 m ft inutes later. a Th ndiwe (41 years) has completed a computer skills course and Losing her grant, too, has jeopardised her ability to attend the a security-training course, but she is unemployed. She lives in clinic regularly to collect her medication, and so to adhere. e Th a government-provided house with one of her children, whom clinic is some distance, and walking makes her very tired. she suspects of drug abuse and who is also unemployed. Her VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 99 Original Article life through social roles that have value, and this provides Experience of diagnosis, stigma and them with the strength to resist stigma and so maintain their resistance health and well-being. Phosiwe’s ‘new identity’, derived from the We have, through these case studies, illustrated various assistance she is able to provide to her niece by helping with responses to diagnosis – anger, violence, blame (Phanuel), housework and childcare, gives her a secure basis from which to withdrawal, grief and depression (Phosiwe), and avoidance of confront stigma. Julius’ role as a counsellor within the church is others (Losta, a Th ndiwe and Julius). We have shown the cost of strengthened by his HIV status, as he has a common experience disclosure: neglect (Thandiwe), verbal abuse (Phanuel, Paulinah, with many of those who turn to him for support, and therefore a Th ndiwe, Phosiwe), accusations and blame (Paulinah), and the confidence to insist health workers treat him with respect. physical abuse (Losta, Paulinah), reactions caused by fear of Losta, in contrast, has no role within her family, as her parents a potentially fatal disease, betrayal and the disappointment of have taken away the responsibility of looking aer ft her child, fractured relationships, reflecting the associated stigma. and she is unable to confront abusive health workers. Responses to stigma varied from passive acceptance to direct confrontation. Losta internalised a sense of shame that she Motivational systems would bring to the family. She felt unable to confront her mother Research on social stress has illustrated that people who or brother, and wished to protect her father from public shame consider themselves to be part of a larger whole, within which associated with HIV, and so had not disclosed to anybody. the needs of its members are equally important (an ‘eco-system’ a Th ndiwe, in contrast, despite ostracism by her family and motivation), are more likely to disclose, and to experience greater considerable insults, resisted the idea of fault or responsibility psychological well-being from doing so. Individuals more (resistance thinking). Phanuel uc fl tuated between strategic focused on their own needs (with an ‘ego-system’ motivation) avoidance and speaking out. Although he challenged the negative are less likely to disclose and less likely to benefit when they labels expressed by his friends (speaking out), he felt unable to do disclose (Garcia & Crocker, 2008). But as these narratives disclose his status to the same friends (strategic avoidance). indicate, an event such as diagnosis with HIV is likely to shift an When others in the community knew of his status, he decided individual’s attention towards his or her own needs (ego-system that the family should move to an area where they were not motivation). Phosiwe, for instance, withdrew from social contact known (strategic avoidance). Paulinah, in contrast, revealed her for several weeks; Phanuel denied his status, and physically and status to her neighbour in order to confront negative labelling verbally abused his wife. With the support of select individuals, (active resistance), and as a result benefited from access to a both Phanuel and Phosiwe were able to express their emotions, group of HIV-positive people with whom to share experiences. make sense of them, and switch to more problem-focused/ Phosiwe resisted negative labels: ‘HIV is a disease not of animals outward looking strategies to care for their health, and draw but of humans’ – and was publicly open about her status, happy meaning from key social relationships. Phanuel drew on the to tell her story to anyone who would listen (activism). support of his wife and a counsellor, became focused on the need to look aer ft his family, and made strategic decisions as to Multiple disadvantaged and new identities when disclosure would lead to additional support rather than Gendered oppression is a common theme in these narratives: condemnation. Drawing on the support of her niece, Phosiwe Losta’s elder brother had reportedly threatened to kill any of decided to be open about her illness to prevent it ‘eating her his sisters should they be HIV-positive; Phosiwe’s first husband soul’. In contrast, Losta’s social marginalisation, and possibly started another relationship when Phosiwe could no longer have her relative youth, meant she had few resources with which to children; Phanuel was physically abusive of his wife Paulinah. adjust to her status. Instead, in order to cope, she rendered the In some cases the experience of more than one disadvantaged diagnosis meaningless: identity created greater levels of marginalisation, as in Losta’s You know it was n fi e for me. Being positive didn’t hurt at all. case (with gendered oppression from her boyfriend and her I was just happy that I now knew what the problem was. brother, compounded by her HIV-positive status). Yet despite desertion by her husband, neglect and stigmatising behaviour by Yet her difficulties in taking the medicine suggest otherwise. close family members, Phosiwe was able to adhere to treatment. Rather than a static categorisation of individuals (with e Th effects of multiple marginalised identities appear not to either eco- or ego-system motivation), these narratives show compound necessarily (Meyer, Schwartz & Frost, 2008), and individuals switching between inward and outward focus, with so the negative impact of stigma, resulting in delayed access to a minimum set of social resources being necessary to enable an care and poor adherence to treatment, is not always predictable. outward focus. This in turn can yield further support. Rather, individuals find meaning in certain domains of their 100 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original Discussion Social support Re-working the conceptualisation of stigma Social support played a crucial role in many of the processes Stigma has been defined as ‘a deeply discrediting attribute’ that described above. Social support provided by family members reduces a ‘whole or usual person to a tainted or discounted had both practical and emotional dimensions. Julius’s family, for one’ (Goffman, 1963, pp.12-13). Stigma is not simply negative instance, cared for him physically when he was ill, leading him attributes, culturally constructed, mapped on to some individuals to reflect that he wouldn’t have ‘made it’ without them. Phosiwe, by others, but requires a language of relationships between in contrast, lacked practical assistance and suffered considerable ‘legitimate’ and ‘spoiled’ identities. It has to be ‘conceptualised distress as a result. Social support was also critical to the ability as a social process, understood in relation to broader notions of of these participants to build a new, positive identity. Julius’s power’ (Parker & Aggleton, 2003, p.16). ‘Legitimate’ identities personal confidence and his role within the church built upon are those accepted by cultural norms, introduced by the the constant support of his family and specific church elders. dominant groups or institutions of society; ‘spoiled’ identities e Th social support of a counsellor enabled Phanuel to see the do not conform or have in some way broken the norms. benefit of accepting his status, and to change his behaviour Although stigma is a social process, there is disagreement as towards his wife. Phanuel’s and Paulinah’s mutual support, to how inevitable discrimination is as an outcome. Link and and the support of other family members, provided them Phelan (2001) include discrimination as part of the definition with a buttress against insults from friends and neighbours. In of stigma, and Holzemer’s model and description encapsulates contrast, a Th ndiwe, rejected by her family despite her attempts stigma as a one way process (stigma triggers, stigmatising to enlist their support and her access to counsellor, was unable behaviours, types of stigma, and stigma outcomes) (Holzemer, to respond to insults and verbal abuse of her neighbours. Losta’s Uys, Makoae et al., 2007). Deacon (2006) distinguishes the social isolation from her family and friends, and lack of social support, process of othering, blaming and shaming, from the outcomes hindered her ability to disclose her status even to her closest of this process (discrimination). She argues that poorer groups friend, or to express her emotions associated with her HIV- can stigmatise wealthier and more powerful groups, even if positive status. the attitudes cannot be enacted as discrimination. This can e Th lack of stable accommodation, experienced by Losta, be argued more strongly. e Th data presented here have shown a Th ndiwe and Phosiwe, is the outcome of unstable family that the marginalised engage in everyday acts of resistance and relations and poverty All three participants spent time negotiation over the labelling of HIV identities, and creation dependent for food and accommodation on people with of new HIV-positive identities. For example, by asserting their stigmatising attitudes. es Th e circumstances exacerbate rights to respectful treatment by health workers, participants vulnerability, hindering both disclosure and ability to engage in are de-linking stigma and discrimination. more active resistance strategies. In addition, both a Th ndiwe and Losta were penalised by the health system as a result of their Differing strategies of resilience and lack of social support: a Th ndiwe had to beg a cousin to sign resistance as her treatment supporter so she could obtain treatment, and e Th existing literature on resistance strategies in the face of health workers’ verbal abuse of Losta is the result not only of stigma describe similar strategies to those identified in this paper. her poor adherence but also her social isolation, exacerbating In an analysis of South African women’s narratives of living the situation further. with a spoiled identity, Rohleder and Gibson (2006) describe Government grants play a crucial role in bolstering social how participants transfer negative social representations associated with HIV onto others (‘splitting off ’), just as Paulinah support from family and neighbours, providing financial access to basic requirements such as rent, food and clothing for the criticises those who do not test. In her description of women’s resistance to stigma associated with childlessness, Riessman unemployed, and meeting the costs of transport to the clinic, so facilitating adherence. Interviewees who were coping (2000, p.130) argues that resistance requires that ‘women’s agency be palpable … where women advocated for themselves relatively well (Phanuel, Julius and Phosiwe) were all receiving a government disability grant. a Th ndiwe’s grant had been and their marriages’. This might include refusing to internalise a negative label (resistant thinking), taking a stand in an terminated and she was struggling to obtain sufficient funds to travel to the clinic to obtain her medication, and so adherence interaction (speaking out or active resistance), or seeking public discussion or confrontation (activism), which is closely aligned was a problem. Losta had also just lost her grant. Both Julius and Phosiwe expressed extreme distress at the prospect that to the strategies used by others engaged in social movements (Poindexter, 2005). On the other hand, strategic avoidance, their grant might be discontinued. VOL. 6 NO. 3 NOVEMBrE 2009 Journal des Aspects Sociaux du VIH/SIDA 101 Original Article such as hiding one’s medication or avoiding social contexts in identities are generated (or denied) as a result of being valued which confrontation might occur, is more akin to resilience and or supported by others, within the immediate family and in the strategies of survival rather than resistance (Kanuha, 1999). As broader social arena. we have illustrated, individuals use a range of strategies, oen ft People living with HIV have to negotiate relationships that switching between active resistance and passive avoidance. have been fractured by a sense of betrayal and sexual jealousy Kahn (2004) argues that experiences of stigma and responses associated with a potentially fatal, sexually transmitted illness. are shaped by locally specific factors. In South Africa, the uid fl In such situations they resort to various modes of engagement: and unstable structure of poor families, oen ft straddling urban problem-focused responses that are active and confronting, and rural locations due to pre- and post-apartheid migration associated with better self-reported health status, psychological patterns, results in complex, and oen ft weak, social networks. resilience and self-esteem (Miller & Cohen 2001; Remien, Rabkin es Th e circumstances are very similar to those described by & Williams, 1992); passive responses including avoidance and participants in this study. In such social conditions disclosure is withdrawal as way of self protection (Lazarus & Folkman, 1984); less likely to occur within a small stable group, and the associated and maladaptive responses which include ‘focusing on and vulnerability limits the resistance and resilience strategies venting emotions’ (Carver, Scheier & Weintraub, 1989). e Th available to people living with HIV/AIDS (PLWHA), as seen in narratives recounted here have shown that modes of engagement the experience of Losta, Phosiwe and Thandiwe above. may change over time, switching away from the initial inward perspective, inevitable aer ft diagnosis, to an outward/problem- focused response. However, not only is this shift assisted by a Managing stigma in the context of coping degree of social support, but it is more likely to yield further with an incurable disease social support. Phosiwe’s or Paulinah’s pro-active responses to e Th particular context under consideration here – stigma isolation (Phosiwe) and a neighbour’s stigmatising comments associated with disease, rather than race (Howarth, 2006) or (Paulinah) led to further positive social support. childlessness (Riessman, 2000) – means that responses by the stigmatised are part of a broader set of strategies individuals Implications for interventions use to cope with illness. To understand the processes at work in individuals’ lives, resistance to stigma should not be considered In efforts to reduce stigma strategies include counselling and support groups aimed at empowerment at the interpersonal in isolation. Coping with a life long illness oen ft involves a search for meaning, attempts to regain mastery or control over level; patient centred approaches within organisations; and rights-based approaches at community and government levels the illness, and efforts to maintain self-esteem (Becker, 1997; Charmaz, 1991; Frank, 1995; Taylor, 1983). er Th e is a need to (Ehiri, Anyanwu, Donath, Kanu & Jolly, 2005; Heijnders & Van Der Meij, 2006). A review of intervention studies (aimed ‘create order’ through generating a new identity that includes the illness (Kralik, Koch, Price & Howard, 2004). In a study primarily at increasing tolerance amongst general populations, increasing willingness of health staff to treat PLWHA, and of the narratives of 12 South African women, Soskolne (2003) describes how participants forge a positive self-identity in the improving ability of PLWHA to cope with stigma) concluded that the impact was small and short term (Brown, MacIntyre & face of HIV as a defence against underlying anxieties. e Th author shows how participants vacillated through conflicting notions Trujillo, 2002). of disempowerment and empowerment, purity and contagion, Often encompassing different components, social movements, strength and weakness, death and continuity, in attempts to cope supported by government action with a rights based approach with anxiety and to resist stigma. Similarly, in an analysis of to health, can build communal resistance to stigma, structurally the experiences of 34 British HIV-positive participants, Squire changing the context in which both individuals and communities (1999, p.109) shows how the ‘self in the interview operates, operate as they respond to HIV and AIDS (Heijnders & Van not as a consistent reflexive project, but as an occasional, Der Meij, 2006). This has been the aim of the Treatment Action situated resistance’. e Th narratives interpreted here similarly Campaign (TAC) in South Africa (with its focus on the right to show that maintaining a new identity is intertwined with treatment, and its ‘living positively’ campaign) (Robins, 2005), resistance, resistance that is sometimes active and assertive, but and of similar social movements in Brazil, Australia and the US at times takes more passive forms of resilience. e Th narratives (Achmat & Simcock, 2007; Altman, 1994; Epstein, 1996). also illustrate that multiple disadvantaged identities do not necessarily compound one another, but are derived from the Conceptualisation of stigma as a social process, framed by social context, and negotiated in complex and varied ways. New broader notions of power, makes clear the limitations of 102 Journal of Social Aspects of HIV/AIDS VOL. 6 NO. 3 NOVEMBEr 2009 Article Original interventions designed to provide more information about of income, or financial support from friends and relatives), a particular illness to ‘put right’ incorrect beliefs, to increase physical (such as accommodation), and social resources (such tolerance by increasing empathy, or to reduce anxiety or fear as emotional support and physical care while sick). If a person on the part of the broader population, without confronting is dependent for any of these resources on family members with underlying social processes ( Jewkes, 2006; Parker & Aggleton, stigmatising attitudes, their ability to draw on these resources 2003; Reidpath, Chan et al., 2005; Varas-Diaz et al., 2005;). is constrained. Finding a new role also requires switching to es Th e strategies need to be complemented by others built on an outward, problem-solving focus, itself requiring emotional an understanding of the factors that facilitate the agency of support. Often a problem-solving focus and a new role can yield people to neutralise or resist stigma. Reidpath and colleagues further support, leaving those with insufficient initial support (Reidpath, Chan et al., 2005) argue that there is a fundamental trapped in social isolation. need for societies to value individuals and groups, in order to Resistance to stigma is enabled both by the depth and breadth provide a basis to determine group membership and allocation of social support available. In poor urban communities in South of social and material resources As a result, interventions need to Africa, from which these participants come, both material and increase the social value of individuals, assisting the stigmatised social resources are limited due to poverty, and exacerbated by to overcome the barriers to accessing resources, such that they unstable family relations, and broad, but weak social relations. are able to reciprocate, and so be of ‘value’ within a community. Positive living is closely associated with better health outcomes Two examples provide evidence of this. Firstly, a project (Douaihy & Singh, 2001), and mechanisms of support to people designed to assistance farmers in West Africa ae ff cted by river to resist stigma appears to be an important factor in this. Since blindness, enabled them to continue farming despite blindness, the agency required to resist stigma is co-produced (requiring and so were no longer stigmatised and excluded from the social support), it is the socially marginalised who have fewer community (Lewis, 2003). Secondly, an intervention to reduce opportunities to demonstrate their social value, who face the internalised stigma amongst sex-workers in India developed greatest risk of transmission, re-infection and failure to adhere the capacity of participants to deal with police raids, negotiate to medication, and so require particular support from the health release aer ft arrest, and to run an NGO to support other sex- sector or community groups. workers. e Th result was an improved sense of entitlement due to their contribution to a section of society (Cornish, 2006). Acknowledgements This present paper has also shown that identities or roles with e Th research would not have been possible without the social value are closely linked to resistance. os Th e participants participants who shared their stories of the difficulties of living able to find a meaningful social role (child care, counselling, with HIV. We also wish to acknowledge Harry Nyathela, who supporting ones’ family) were able to rebuild their self-esteem conducted and translated the Sesotho interviews. e Th research and were more likely to resist stigma, rather than using was funded by the Canadian International Development Agency avoidance or passive strategies. Interventions that facilitate the (CIDA). development of meaningful social roles by the stigmatised are likely to increase their social ‘value’, enable social engagement References between the stigmatised and stigmatising, as well as facilitating Achmat, Z. & Simcock, J. (2007). 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Journal

SAHARA-J Journal of Social Aspects of HIV/AIDS – Taylor & Francis

Published: Nov 1, 2009

Keywords: stigma; resistance; identity; HIV/AIDS; South Africa; Stigmatisation; résistance; identité; VIH/SIDA; Afrique du Sud

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