Corinne Squire

Being naturalised, being left behind: the HIV citizen in the era of treatment possibility

With around five million people accessing anti-retroviral treatment, which significantly reduces mortality and extends life, the HIV pandemic now exists in a context of treatment possibility, if not access. This article discusses ways in which the pandemic is becoming naturalised through medicalisation, normalisation and marketisation, and how these processes undermine themselves internally. The article goes on to examine some further denaturalising discontinuities in how the contemporary HIV era is lived, which derive from HIVs specific biological, socioeconomic and psychological characteristics, and which leave many at some distance from the relatively hopeful HIV present. This article argues that naturalisation and aspects of ‘being left behind’ are important elements of HIV experience which require continued attention. Throughout, it examines the significance of naturalising and denaturalising processes for HIV citizenship. The article draws on narrative data from studies of HIV support in the UK, 1993–2010, and in South Africa, 2001–2004, to make these arguments.

Experiences of People Living with HIV

This chapter reviews research on experiences of people living with HIV in South Africa, and suggests that in addition, poetry, fiction, visual arts, music, autobiography and documentary are crucial to understanding HIV experiences (Cameron, 2005; Dangaremgba, 1996; Health and Development Africa/Soul City, 2007). Research on HIV experience needs to include not just statistical and qualitative studies, but also writing and images by and about people with faces and names whose lives have been changed by the epidemic.

'You Are Here': Visual Autobiographies, Cultural-Spatial Positioning, and Resources for Urban Living

This paper reports on a study of visual autobiographies produced in art workshops conducted in a variety of social contexts in East London with 19 research participants 11 women and girls, 8 men and boys – ranging from 10 to the 50s. From narrative analysis of the images, associated interviews, and field notes on the production and exhibition of the images, the paper argues that the study of cultural activity can allow us to identify cultural-spatial positionings related to, but also distinct from, socio-spatial positionings. Those cultural-spatial positionings indicate and in some cases produce cultural and symbolic resources that might not be discernable from other non-visual research data, that may differ importantly from participants’ socioeconomic resources, and that could usefully receive more attention. The study also suggests that transnationalism is strongly tied to peoples narratives of their cultural lives within global cities, is critically articulated, and can be under-recognised when it is rooted in family.

Feeling Entitled: HIV, Entitlement Feelings and Citizenship

We live with a sense of being continually immersed in, even assailed by, publically performed emotions. Popular commentators and social theorists compete in dating this tendency to a variety of beginnings — enlightenment individualism; liberal humanism; discourses of the self in the late nineteenth century and onward; postwar mass mediatising of the emotions; the postmodern relativising of representation; the late-modern breakdown in social and political organisation or the globalising of emotional and other economies (Baudrillard, 1995; Bauman, 2000; Craib, 1994; Furedi, 2004; Giddens, 1991; Himmelfarb, 1996; Lasch, 1991; Lyotard, 1984; Maclntyre, 1984). These explanatory trajectories often value their endpoint negatively, as the banalisation and even the destruction of the public realm; or occasionally, positively, as indicating an expansion, even a democratisation, of culture. In this chapter, I want to look not at the value of the public culture of feelings or where it comes from, but at the social consequences of one particular public feeling, that of entitlement, when it is expressed in public and quasi-public contexts by or on behalf of a particular social group: people in the UK who define themselves as HIV positive.1 I am going to argue that this public feeling does indeed have ‘positive’ consequences: it tends to promote a kind of HIV citizenship within a frame of social inclusion and at times, social justice.2

From HIV’s Exceptionalism to HIV’s Particularity

This chapter examines convergences and conflicts between contemporary positions that people take in relation to HIV, in policy and in everyday lives. The quotations above present three such positions. The first, an optimistic assessment of the current possibilities for prevention and treatment, particularly those arising from new biomedical developments, suggests that HIV may soon cease to be an emergency in the world. I will call this the ‘naturalisation’ position. It assumes not that HIV will no longer exist, but rather that AIDS will disappear and that HIV will become a regular, natural part of the biosocial order of things, still difficult, but no longer to be seen in catastrophic terms.2

Why the three letters matter

This book is about living with the Human Immunodeficiency Virus, or HIV, and with anti-retroviral, or ARV, therapy, the combination of medications that helps HIV positive people to live long and healthy lives. Today, when ARV treatment is more and more available to those who need it, and is in prospect for those who do not yet have access, the two three-letter acronyms, HIV and ARV together, increasingly index people’s experiences of the pandemic. The book examines lives lived with HIV and ARVs in different national contexts, primarily the United Kingdom and South Africa, where I have conducted interviews about HIV support with people living with HIV, since 1993 in the United Kingdom (most recently in 2011), and since 2001 in South Africa (most recently in 2012).

Being Left Behind

The problematic naturalisations and denaturalisations achieved by medicalisation, normalisation and marketisation appear in acute form around HIV, but they are not particular to it. This chapter argues that the HIV citizen’s formation by the naturalising processes of the pandemic is also disrupted by factors highly specific to HIV, and that these specificities are difficult but important to address. In my UK and South African research, these factors created the strongest discontinuities in people’s HIV narratives, positioning the narratives on the edge of HIV citizenship, and the narrators as HIV citizens under erasure, on the borders.

Living with HIV: Three-letter Lives in South Africa

In summer 2012, I attend the International Congress of Psychology at the Cape Town conference centre; the event overlaps with a South African fashion exposition. Psychologists are, in the main, utilitarian dressers. In the evening, though, this ferociously air-conditioned palace of glass is taken over by the fashion crowd: immaculately coiffed, dressed to impress, with dramatic shoes. Given the statistics, many of these South Africans are likely to be living with HIV. But everyone looks healthy, and the space is clearly hosting the upside of the country’s record-breaking Gini coefficient, the generally accepted measure of national inequality. I have a meeting in the lobby with an acquaintance, a sometime worker in the HIV sector. Like most in that sector, my visitor could be said to be a member of the South African ‘precariat’ (Standing 2011), a group that in this country includes many with quite high levels of social and cultural capital. Even for someone like my visitor, with high school education and a good employment history, jobs are generally short-term, with reduced benefits. This woman has just lost hers. Her HIV treatment is assured and she receives a child support grant, but she is too well to get a disability grant and the unemployment benefit for which, like a small minority of South African workers, she is eligible, will not last long (Bhorat et al. 2013).

A Long-term Condition: HIV’s Normalisation

In early 2013, I visit a UK HIV organisation, some of whose service users have participated in my research, to give some feedback about what all 47 interviewees in my study of HIV support narratives have said. As is usually the case, the workers and volunteers, most of them living with HIV themselves, already know almost everything I tell them. Again as often happens, their apparently ‘local’ knowledge, accreted from numerous stories of practice in a specific city, turns out to have greater transferability than it is generally given credit for. At the end of the discussion, I mention how many interviewees positioned themselves ambiguously in relation to HIV. Interviewees narrated themselves both as citizens like all others, for whom HIV is just one aspect of their lives, and as people in whose lives certain three-letter acronyms are powerful, and must never be lost sight of. Once more, this ambiguity around HIV’s normalisation is something that the group knows about very well. One member says that the organisation faces the issue all the time, especially with newly-diagnosed people. He wants to tell them the encouraging story of HIV’s good medical management and the normal, happy lives that HIV positive people can live. At the same time, he knows that this is not how living with HIV always works out. So he must position his redemptive narratives (McAdams 2006) strategically, against all too common experiences of highly de-naturalising illness, as well stigma, discrimination, exclusion and isolation.

When the Drugs Do Work: The Medicalised HIV Citizen

In March 2013, the media celebrated the case of a baby cured of HIV by aggressive ARV treatment shortly after birth. This treatment was provided because her HIV positive mother had not had the usual prophylactic treatment during pregnancy. Despite a later failure to keep taking ARVs, and evidence that HIV remains in her body, the child now shows no sign of active HIV infection, and so demonstrates ‘functional cure’ (Persaud et al. 2013). HIV organisations worldwide were notably cautious in their responses. The United Kingdom’s first and largest HIV-focused NGO, the Terrence Higgins Trust (THT), commented that the case had little relevance for them since 98–9% of babies born to UK HIV positive mothers were in any case HIV negative at birth because of the UK’s thorough vertical transmission prevention programme (Semple 2013). THT spokespeople tried to move the focus away from ‘cure’, towards the limited applicability of the results (for women diagnosed during labour or babies discovered early to be HIV positive), the uncertainty of later outcomes of this treatment programme, and the importance of better antenatal screening and PMTCT programmes worldwide (Terrence Higgins Trust 2013). Discussing the notion of cure more widely, in the aftermath of a slightly later announcement suggesting ‘functional cure’ of adults if treated in the first ten weeks after infection, THT similarly emphasised the importance of using condoms, getting tested regularly, and continuing to take ARVs if you are positive (Innes 2013).