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Susan Reynolds Whyte’s Second Chances: Surviving AIDS in Uganda

second chances coverSecond Chances: Surviving AIDS in Uganda

Susan Reynolds Whyte, editor

Contributions by Godfrey Etyang, Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne Mogensen, Jenipher Twebaze, Michael A. Whyte

Duke University Press, 2014, 328 pages

 

What would happen if an entire generation of people who were expected to die experienced a ‘medical resurrection’?What would that generation do with their second chances? What would life look like for them? Susan Reynolds Whyte and her team explore these and other questions in Second Chances: Surviving AIDS in Uganda.

The medical miracle under investigation is anti-retroviral therapy (ART). When first introduced to Uganda, antiretroviral medication (ARVs) literally brought people back from the brink of death. An entire generation of Ugandans who had been expected to die of AIDS was suddenly given a second chance at life.

As Whyte and her team argue, survival created a ‘biogeneration’: a generation marked by the presence of both a medical diagnosis (HIV) and treatment (ARVs). The ‘return to life’ gives this first cohort the shared experience necessary to be a generation unto themselves. Unlike chronic illnesses like diabetes, which also require daily medication, ART in Uganda entails close treatment surveillance, clientship within particular clinical networks, and an identity assumed from the social networks informed by diagnosis, access, and adherence to ARVs. As the authors specify toward the end of the book:

‘The new social relations of the first generation were first and foremost to their health care providers and to the treatment programs they joined. Those relationships were the basis for possible membership in support groups and HIV welfare organizations. They were, in any case, the condition for continuing life in their families’ (277f).

That is, what is new in the biosociality of this first generation to survive HIV is ongoing clientship as a form of treatment, with all the repercussions that clientship has within family and professional relationships. These repercussions included some clients taking on new roles as community educators and treatment group facilitators. For almost all in that first generation, visibility – among relatives and within the community – became a key component of ‘coming back to life’.

Because this is a book about second chances, it’s important to note what the book is not: Second Chances does not focus on global political economy, structural violence, or the ethnography of clinic workers or the interaction of clinic administration with Ministries of Health or the Uganda AIDS Commission. Likewise, reflecting the mostly heterosexual transmission pattern of HIV for most of Africa, the way Ugandan politics intersects with HIV and the MSM (men who have sex with men) community is not discussed.

The ethnographies which form the backbone of Second Chances emerged from two rounds of fieldwork. From a group of 48 people referred by clinics to the researchers for interviews in the first round of fieldwork in 2005 – 2006, 24 were selected from seven treatment sites throughout the country to participate in eight follow up interviews during the second round of fieldwork in 2006 and 2007.

While the authors note the sample is not fully representative of the ‘average’ Ugandan living with HIV, the authors nevertheless included urban and rural, male and female, free and paying clients in the study. The age range of participants was slightly older (between 30 and 50 years of age) and slightly better educated than the average Ugandan. The follow up visits were conducted at homes and work, which decentered AIDS from the discussion and allowed a broader insight into the daily lives of participants: visits were spent chatting over family and other matters, in a fairly successful effort ‘to see how treatment fits in with other concerns’ (p xi).

Showing the flexibility of the concept ‘generation’, which the authors root in Mannheim’s 1923 concept of a group consciously sharing a particular, psychologically formative location within historical events, the authors themselves point out that three ‘academic generations’ of anthropologists contributed to Second Chances: Susan Reynolds Whyte and her husband Michael Whyte comprised the first generation; their two Danish students form the second; and four Ugandan anthropologists comprise the third (10, ix).

The Ugandan researchers conducted both the initial interviews and the follow-up visits. Local anthropologists therefore were able to use a self-reflexive, rather than an imperialist, gaze. Among other issues, the mix of local and foreign anthropologists served to eliminate intimations that AIDS is an ‘African problem’, resulting from a somehow ‘deviant’ ‘African sexuality’ at odds with a standard ‘Western sexuality’.

The authors call Second Chances a ‘polygraph’, in contrast to monographs by one author or edited volumes of one author per chapter. In this polygraph, multiple authors work from the same data, teasing out themes and co-authoring chapters together. With eight pairs of eyes, multiple perspectives on a common story emerge.

The end result is a clearly organised book of twelve chapters (including the introduction) which can be loosely grouped into three sets of related themes: accessing ART; family life; and normalizing ‘the resurrected body’. Each chapter is prefaced by a case study, followed by separately marked thematic analyses which draw in the lives of other participants. While a polygraphy does mean that no single theoretical approach dominates the narrative, the reader can use the opening case studies to think through her or his own favoured theoretical model.

The introduction provides background to the field site: Doctors in Uganda were the first to report AIDS cases in Africa (where it was called ‘slim’) in 1982. HIV treatment in Uganda remains dependent on foreign funding, with a resulting diversity of treatment programs. When ARVs arrived in the early 2000s, the research team had a unique opportunity to record the formation of a ‘biogeneration’.

But who gets this ‘second chance’? A particular policy implication highlighted in the first chapter, ‘Connections’, is that not everyone has equally effective, large, or varied social connections — and thus not everyone has equal chances for finding affordable, accessible care in a timely manner.  That includes testing for HIV, introductions to treatment sites, and negotiating bureaucracies within treatment programs.

Second chances can also depend on who you get to know. The linguistic shift from ‘patients’ to ‘clients’ discussed in the second chapter underlines how the ‘lopsided friendship’ of a client-patron relation keeps treatment flowing smoothly, even when paperwork is the official seal of ‘belonging’ to a clinic.

Getting to treatment another focus of life on ART, and the third chapter. Because families and workplaces in Uganda often bridge urban and rural locales, while treatment facilities, which can close from lack of funds or relocate, are almost exclusively in cities, clients sought ‘a tactical congruence among livelihood opportunities or requirements, family support, and treatment connection’ (81).

The authors address the classical anthropological theme of kinship through chapters devoted to the family, partners, and children. In the 1980s and 1990s, AIDS reconfigured families and familial alliances; the authors consequently argue that ‘families can be understood as a changing network of possible relationships rather than as units of undifferentiated solidarity. Second chances are heavily dependent on these contingencies of relationship for better or for worse.’

The authors note that ‘generally, the extra challenges of HIV and ART exacerbated existing tensions and strengthened ties that were already sound.’ (107) One element in this dynamic which stood out was how food resources, often tied to clientship in an ART program, condition family ties through treatment program policies towards food sharing among clients’ families.

Meanwhile, ‘testing and ART served to problematize sexuality, to cast sexual relations in another light and make them objects of concern,’ which the authors discuss in ‘Partners’ (chapter five). In cases of partners having different HIV status, ‘Condoms took on meanings of care, responsibility, virtue, and enlightened modernity.’ (138)

The chapter on children is especially noteworthy. As the authors observe in chapter seven, ‘so much of the discourse about HIV is about relationships with sexual partners, yet in many ways relationships with children are the most intense and problematic. Children are about the future that is restored to those who did not die as they expected,’ the living symbol of a second chance (164).

The final set (Bodies, Food, Medicine, Life) treats the theme of returning to life: the impact treatment has on work-life, perceptions of the body, and reintegration into normal social expectations about ‘making a living’.

ART creates challenges in managing work schedules around eating and medication-taking, quite apart from potential workplace stigma regarding HIV. Food itself presents its own realm of adaptation to ARVs, since some medication must be taken with food, and weight lost before ARVs must be regained through changed nutrition. Intimately tied to the theme of public presentation for work is the anthropological theme of the body. The body’s appearance, its role in acquiring, advertising, or hiding one’s HIV status are all relevant to how ART has presented second chances to live in Ugandan society. Each of these themes is amply treated in its own chapter.

The final chapters return to the questions posed at the outset: How is ART medicine viewed differently from other common medications like anti-malarials and insulin? What happens once treatment is accessed and becomes regularly available? Once people ‘return to life’, how do they meet the challenges of finding wives, untangling social relations, negotiating community ties? In a sense, the final chapter opens onto the experience of the second biogeneration, a generation not expected to die of HIV/ AIDS, but to remain in the community while integrating the particularities that come with ARV clientship.

Over all, Second Chances is an excellent source of health narratives about negotiating HIV status in Uganda, Second Chances will naturally interest anthropologists of East Africa, HIV and biosociality. Chapters on embodiment, via the physical changes accompanying both treated and untreated HIV, are well described.

NGO policy makers can also read the material with an eye to potential intervention points, including how work and family inform clients’ adherence. The chapters also underline potential sources of client disillusionment, and how competition between programs plays out in client and family decision-making about where to test and continue treatment.

The work does have a few drawbacks, none of which undermines the fundamental argument. The polygraphic nature of Second Chances means no one writing style predominates. Combined with the multiplicity of interlocutors, this constant shift in style makes for an occasionally taxing read. While the authors do a decent job of including epithets (‘Saddam the Soldier’) for the ‘cast of characters’ in the body of the work, the initial onslaught of participant names was a bit overwhelming.

Despite tantalising allusions to the role of religion in many participants’ lives, the authors do not devote a chapter specifically to religious beliefs, HIV, and ARV. Religious experience and illness is therefore a theme which warrants further attention from other anthropologists, especially given the frequent references to ARVs as a miracle or gift from God, and the overall theme of resurrection.

Finally, some readers might argue that this work is dated already and no longer relevant. The 90-90-90 UNAIDS approach is being rolled out; CD4 levels no longer determine when treatment is initiated; and the global recession underlines the fragility of donor-based treatment programs.

Such characterisation, however, would miss the point: this book is about what it is like for the first generation to live with ART embedded into daily life. As the authors explain,

‘Sociality requires us to look at the everyday forms of interaction that are often beyond the purview of health-policy makers, even though they are essential strands of the web in which health rests. … Taking this broad approach means using ART as an optic for seeing lives and the context in which they are lived, just as it means using lives and context for understanding ART.’ (2)

In other words, by examining how people go from being at death’s door to becoming community leaders, relationship brokers, and network facilitators, Second Chances looks at the relationship between power and illness, social networks and recovery, and the reliance of all four on the simple but uncertain fact of living.

A worthwhile look at the first generation to survive HIV in Uganda, Second Chances captures a richly textured image of a generation which was the first to be marked by both medical diagnoses and medication adherence – and the varieties of making a living with a second chance at life.

 

Jason Johnson Peretz holds an M.Phil in Medical Anthropology from Linacre College, University of Oxford, and an MAOM from the New England School of Acupuncture. He currently works in the Division of Global Health, HIV and Infectious Disease at the University of California, San Francisco (UCSF), and volunteers as a sexual health and HIV test counsellor. Jason consults on projects at the intersection of global public health policy and human rights.  He can be reached on Twitter @JasonOxon.


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