‘Second Chances: Surviving AIDS in Uganda’ reviewed by Dr Megan Wainwright

Second Chances: Surviving AIDS in Uganda edited by Susan Reynold Whyte (Duke University Press, 2014).

978-0-8223-5808-4_prSecond Chances: Surviving AIDS in Uganda is an account of the lives of the first generation of people to experience not only the widespread availability of anti-retroviral therapy (ART) but its accessibility through free treatment programmes. It offers a window into the everyday experience of Ugandans and the ‘second chance’ ART offered them between 2005 and 2007 — a time when the prevailing experience of HIV had been premature death. In this review, I give an overview of the themes and topics of the book, comment on its style and content and pose a number of questions. The book is a great resource for anyone interested in: the rollout of ART in an African context; Ugandan kinship and social relations; collaborative ethnographic work; and the anthropology of chronic illness.

One of the book’s main points is that the rollout of ART in Uganda was exceptional. On one hand, it is an exceptional story because of its success, foregrounded by the willingness of people to get tested. The paralyzing stigma described in other African contexts, such as South Africa, was not entirely the case in Uganda after rollout, highlighting the social construction of the illness and collective responses to it. The authors explain that accepting your status and being open about it (i.e. telling others about it) was framed as the performance of modernity and enlightenment — revered qualities. To be judgemental about someone’s HIV status was therefore ‘backward’ and would go against a Ugandan worldview that it is unwise to laugh at or judge others because what they have could happen to you. More exceptional was that the delivery of ART implied a form of healthcare never before seen or experienced in Uganda, based around what the authors call ‘clientship.’ Clientship was a process of affiliating to a programme or provider which in return for one’s loyalty would deliver a consistent ‘package’ of care, otherwise unheard of in the Uruguayan private-public health system. Of course, the ‘projectification’ of the healthcare landscape meant that not everyone had access to the same ‘package’ depending on where they received their ART. The ‘best’ programmes were those that provided not only ART, but CD4 tests, treatment for opportunistic infections, and other bonuses (e.g. food aid).

In order to tell the exceptional story of ART rollout, the authors draw on the heuristics of biogeneration, sociality and second chances. As a biogeneration characterised by living-with rather than dying from HIV, the authors describe how the status itself was transformed into a kind of ‘qualification’ with which to obtain different forms of assets and resources (e.g. a job as a counsellor, food aid). In terms of sociality, the main point is that the clientship model activated a biosociality along the patient-provider/providing institution axis, more so than between people with the same diagnosis. The ultimate aim people had was to return to participating in family life. Families and social networks feature prominently throughout the book and the reader comes to a richer understanding of the performance of relatedness, how HIV activated new kinds of kinship, and how crucial family members were to the success of ART. Family care went from being about nursing a rapidly dying family member to helping sustain them and provide long-term support. Thus, the ‘second chance’, say the authors, was the chance to return to life, and all the daily struggles, social and financial, that that entailed. Partners, Children, Work, and Food (all individual chapters) make up the second chance to live a ‘normal’ life. The chapters Bodies and Medicine problematize the idea of ‘normalcy’ by highlighting the uncertainty and stigma brought about by the acute infections and side effects arising from HIV and its treatment. In the end, life goes on and so does the struggle for not just life but livelihood in Uganda (final chapter).

Each chapter opens with a rich ethnographic story that captures the imagination as well as it illustrates the main theme of the chapter. I was particularly drawn to Suzan’s case illustrating mobility and transport. I could not think of when I had last read such a rich, compelling and illuminating account of the distance people go (literally and figuratively) for their health, and would be quick to assign this to students if exploring the topics of transport and mobility. As you continue to read, the same people and stories re-emerge throughout the chapters so that by the time you reach the final cases you feel you already know a bit about the person. This creates the unusual effect of having a multi-authored collection read like a single-authored book. Judging the book by its cover, it looks like any other ‘edited volume’ but the authors reject this descriptor and refer to it instead as a ‘polygraphy’.

Polygraphy refers to the fact that each chapter is written by a different combination of the eight people who engaged in collaborative ethnography – i.e. the researchers all carried out fieldwork and got to know the same participants with interviews sometimes occurring in pairs. 48 people on antiretroviral treatment participated in the study and twenty-three of them welcomed more sustained engagement through repeat-visits. The “polygraphy” preface explains how the eight authors began working together, and describes their relationship in academic kinship terms – with the grandparents Michael Whyte and Susan Reynolds Whyte supervising the second generation of Danish colleagues who in some cases were involved in supervising the generation of Ugandan scholars. In this way, the volume is an interesting example of North-South collaboration in project design, field work, analysis and writing over time. Stylistically, another refreshing feature of the book is how it demystifies the relationship between researcher and participant by including detail about the requests for help (usually financial) and the researcher’s response to these.

The volume mostly discusses or draws parallels with other HIV research, yet the parallels between the impact of HIV and the impact of other chronic conditions will be evident to those reading and working on the anthropology of chronic illness. For those readers, you may be left wanting a discussion about what the experience of transitioning from dying to surviving, or from terminal to chronic, can tell us about the experience of chronicity more widely – across conditions? How is the relationship between CD4 count and how healthy a person looks, similar to the relationship between lung function and apparent health, or renal function or overall function? What’s similar about how a person relates to their CD4 count numbers and how a person relates the to the oximeter readings saying how much oxygen they have in their blood? How are the marks HIV make on the body different from the fistula of the renal patient and the barrel chest and clubbed nails of the person with severe COPD? What is distinct about HIV compared to other chronic illnesses, especially those that also may have involved a return from the brink of death? A minor but interesting stone left unturned was how people used the word ‘sick’ to describe themselves. How did this differ between participants? Was sick an overall identity, or did one identify as sick only when feeling ill?

The authors are very clear that surviving AIDS is ‘a process still unfolding’ (p. 2) and in the final chapter explain how following their study, there was trouble with drug provision tied to the global financial crisis, which lead to an acute sense of the precarious base on which the promise of ‘life with free treatment’ was being made. I ended the book with the following question in my mind ‘(when) does HIV stop being “exceptional?”’ As being HIV-positive is, with treatment, a chronic condition and not a death sentence, does that mean that eventually the diagnosis will stop being a qualification for getting a ‘break’, e.g. a favourable deal on transport, a forgiveness on a loan? Are there any clues now as to how subsequent generations will experience ‘living positively’?

Reviewed by Megan Wainwright, a medical anthropologist working on chronic illness, COPD, breathing and oxygen as a Postdoctoral Research Fellow in the Division of Social and Behavioural Sciences, School of Public Health and Family Medicine, University of Cape Town. She is also an Honorary Research Fellow in the Department of Anthropology and a collaborator on the Life of Breath Project at Durham University, UK.

Correspondence to Dr Megan Wainwright.

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