Asha Persson

Facing HIV: Body Shape Change and the (in)Visibility of Illness

ABSTRACT Illness is commonly invested with considerable stigma because of its tendency to evoke charged meanings around corporeality, selfhood, suffering, and mortality. Perhaps more than any contemporary disease HIV/AIDS has served as a powerful signifier for a range of cultural anxieties. Given the resultant stigma, HIV becomes very much a question of visibility. This article explores the visibility of HIV within the Sydney gay community with reference to lipodystrophy, an unusual process of fat redistribution caused by HIV therapy that manifests in a series of distinctive body shape changes that have come to signify HIV socially. Conceived through the cultural lenses of AIDS, medicine, illness, and body image, lipodystrophy is largely constituted as negative and shameful, as Other in the ethnographic domain. I examine how this conception is reproduced and contested in narratives and experiences among HIV-positive gay men who have lipodystrophy. Their stories suggest diverse “ways of seeing” lipodystrophy that reveal an ambivalent potential of visibility not only as a medium of stigma, differentiation, and discrimination but also as a medium of affinity, empathy, and desire. These localized patterns of illness visibility are explored in relation to the circulation of meanings within a broader social sense and their significance in terms of a more general consideration of representational practices and their social and ethical implications, with specific attention given to educational and media representations of HIV/AIDS in Australia and also in the United States.

Incorporating Pharmakon: HIV, Medicine, and Body Shape Change

Invested with the capacity to reinstate physiological order, medicines are at the centre of contemporary health care. Their purpose and efficacy are generally seen as predictable and concrete: disease = therapy = outcome. These culturally specific understandings shape the practices and meanings of taking medicines. This article, however, queries what actually takes place when human bodies and medical drugs converge. Is it a solely therapeutic affair, a restoration of bodily normality, or one of multiple transformations? The ambivalent meaning of the original Greek word for drug, pharmakon, intimates the potential of medicines to act as ‘remedy’ as well as ‘poison’. Using pharmakon as a conceptual tool, the article explores the complex, and often paradoxical corporeal effects of HIV combination therapy, with particular focus on lipodystrophy, a peculiar change in people‘s body shape. This unintended and frequently distressing iatro-genic phenomenon challenges common notions of therapeutic efficacy and causality and foregrounds the productive dimension of medical drugs - their capacity to reconfigure bodies, diseases and identities in multiple, unpredictable ways.

From closet to heterotopia: A conceptual exploration of disclosure and ‘passing’ among heterosexuals living with HIV

This paper explores how experiences of disclosure and passing among heterosexuals living with HIV in Australia can be meaningfully conceptualised beyond therapeutic discourses and habitual metaphors. It engages in a dialogue between qualitative research material, HIV disclosure literature and theory. It is first argued that an emphasis on the therapeutic value of disclosure in much of the literature obscures the complexities of HIV stigma as socially produced and lived. Next, the paper considers the concepts of ‘the closet’ and ‘coming out’, which have become short‐hand for a range of social stigmas. Although parallels are found between the productive effects of the closet and the research material, the idea of ‘coming out’ fails to capture the cultural context of HIV in Australian heterosexual society. This raises questions about the contemporary tendency to invoke the closet as a presumedly universal metaphor. Foucaults idea of heterotopia is proposed as an alternative way of conceptualising the lived worlds of disclosure and passing in this research study, with the hope of opening out future discussion and theorising.

HIV Health in Context: Negotiating Medical Technology and Lived Experience

Biomedical constructions of health and illness as objective categories have long been challenged by social theorists. As part of this critique, an analytic distinction is made between the domains of doctors and patients to highlight differences in perspective and power. Illness narratives and phenomenological studies foreground how patient experiences and understandings of health are complex, socially embedded and often conflict with medical models. This article, however, asks how patients make sense of their health at the interface of these domains. This question is explored with reference to 16 men living with HIV and the ways in which they negotiate medical discourse and technology in relation to lived experience and, conversely, how they interpret their own bodily symptoms in light of clinical construction of health. These negotiations contest the authority of biomedical definitions, but also reveal a more dynamic and technologically mediated negotiation within patient experience than some phenomenologically oriented theories on health allow.

Sero-silence and sero-sharing: managing HIV in serodiscordant heterosexual relationships

Abstract Research shows that couples with differing HIV status can face a number of social, sexual and relationship challenges. Communication is often emphasised as the key to couples’ ability to cope with these challenges. Silence by implication becomes positioned as inherently negative, even dysfunctional. The privileging of communication as proper therapeutic adjustment to illness forecloses consideration of the complexities of managing HIV as a serodiscordant couple, let alone any enabling aspects of silence. Drawing on qualitative research interviews with HIV-serodiscordant couples in Australia, this article examines the usefulness of this polarisation between communication and silence and explores alternative ways of understanding silence that might offer useful tools for HIV health workers and researchers.

Vulnerability, gender and “proxy negativity”: Women in relationships with HIV-positive men in Australia

In contemporary international HIV discourse, women are positioned as especially vulnerable to HIV. This vulnerability is ascribed to gender inequality and its many structural, social and sexual manifestations. It is an important discourse in that it foregrounds how the realities of women worldwide constrain their ability to control their lives and bodies and, consequently, their ability to protect themselves against HIV infection. At the same time, its analysis rarely exceeds a generalised description of gender and power and, as such, fails to usefully engage with the specificity of serodiscordant gender relationships. Drawing on qualitative interviews with HIV-negative women and their HIV-positive male partners, who participated in a larger study on HIV and heterosexuality in Australia, we argue that without a considered analysis of the gendered interplay of differing HIV statuses, the vulnerability discourse remains limited in its capacity to capture the diverse, complex ways in which these HIV-negative women negotiate HIV in their sexual lives, how they are positioned in their relationships, and how vulnerability can figure in less obvious ways. We discuss how gendered meanings invested in the womens HIV-negative status constituted a powerful conduit to heteronormality for their male partners. The mixing of serostatuses made it possible for the men to assume a kind of proxy negativity, a desired state of redeemed masculinity. We explore two ways in which this proxy negativity operated among the couples and shaped their sexual practices. As a result, this paper makes an important contribution by showing how vulnerability to HIV infection can hinge on the different ways serodiscordant couples manage gendered meanings around serostatus emotionally and sexually.

Notes on the concepts of ‘serodiscordance’ and ‘risk’ in couples with mixed HIV status

Abstract Serodiscordant primary relationships, in which one partner is HIV-positive and the other is HIV-negative, are increasingly recognised as a key context for the transmission of HIV globally. Yet insights into the dynamics of serodiscordance remain relatively limited. I argue that to understand what makes serodiscordant couples engage in sexual practices that increase the chance of transmission, we need to examine what HIV ‘risk’ actually means in different cultures and contexts. A ‘socially situated’ approach to HIV risk moves beyond its scientific conceptualisation as an objective ‘fact’, revealing a diversity of perceptions and competing risks. It also reveals that couples do not necessarily perceive their mixed HIV status in terms of ‘difference’, a common assumption that predetermines serodiscordance and thereby obscures its many and complex enactments. I draw on examples from the social research literature to illustrate how serodiscordance is shaped in different ways by local practices, priorities, and meanings. I argue that it is within these lived contexts that perceptions and negotiations of ‘risk’ arise and, thus, where couples’ sexual practices need to be situated and understood. Such insights are timely as HIV research and prevention grapple with emerging scientific data that challenge traditional understandings about HIV transmission risk.

Reflections on the Swiss Consensus Statement in the context of qualitative interviews with heterosexuals living with HIV

Abstract In 2008, the Swiss Federal AIDS Commission released a statement concluding that people with HIV who are on treatment and have an undetectable viral load are non-infectious and can safely practice unprotected sex with their HIV-negative partner under certain conditions. Contradicting over 25 years of HIV prevention messages, the so called Swiss Consensus Statement sparked a polarised international debate. One key concern is that the Statement will be misinterpreted to imply that everybody on treatment can have unprotected sex. Therefore, critics warn against any departure from the emphasis on condoms as the most effective prevention method. Given this concern, it is useful to reflect on what relevance the Swiss Statement may have for those concerned. This paper draws on qualitative interviews with HIV-positive heterosexuals and HIV-negative partners in Australia. Conducted both before and after the release of the Statement, these interviews revealed that sexual decision-making was not based solely on calculations of risk, but shaped by complex emotions and relationship priorities. The interviews also revealed that participants were sceptical towards the Statements prevention message. These findings call into question the central concerns that drive this debate.

HIV-Negativity in Serodiscordant Relationships: The Absence, Enactment, and Liminality of Serostatus Identity

Three decades into the HIV epidemic, one affected group remains largely invisible: HIV-negative people in intimate relationships with HIV-positive people. Their lives are entwined with the everyday realities of HIV, whether emotional, sexual, social, or medical, yet their experiences, meanings, and practices of being HIV-negative in that context are little considered and understood. When they do appear in the HIV literature, they tend to be assigned an identity that is preconceived as inherently different from and in tension with HIV-positivity. Using anthropological theory, research literature, and qualitative interviews with HIV-negative partners in Australia, I challenge this idea by exploring the social absence, enactments, and liminality of HIV-negative identity in serodiscordant relationships.

When HIV-Positive Children Grow Up: A Critical Analysis of the Transition Literature in Developed Countries

Young people with perinatally acquired HIV are routinely problematized in the research literature as inadequately equipped to manage transition to adolescent sexuality and adult clinical care without comprehensive interventions, partly because of challenges associated with adolescence itself, and partly because of neurocognitive and psychosocial dysfunctions commonly attributed to these children. However, little is actually known about this population, given their recent emergence in the HIV epidemic. Using critical discourse analysis, we argue that several problematic assumptions operate in this literature, hampering the objective of understanding these young people. Our analysis can contribute to a reframing of future research on HIV-positive adolescents, by encouraging greater attunement to the experiences of the adolescents themselves and to the discursive meanings that underpin research agendas, so that different and more productive questions can be asked and answered.