‘Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia’ reviewed by Dr Koreen Reece.

‘Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia’ by Jean Hunleth (Rutgers University Press, 2017).

In Children as Caregivers: The Global Fight against TB and HIV in Zambia, Jean Hunleth provides a detailed account of the often invisible care-work that children undertake, the interdependencies their care cultivates, and the crucial roles they play in sustaining their families through times of crisis. It is a timely account: from the recent Charlie Gard case in the UK, to the fraught debates around child refugees in Europe and the children of undocumented immigrants in the US, contemporary public concern with children’s well-being gravitates around the question of who ought to bear responsibility for their care – their parents, the state, or specialist agencies. Interventions launched to respond to public health and humanitarian crises answer this question in different ways, but largely ignore the ways in which children themselves work to provide care for themselves and others, thereby building life-sustaining relationships. Children as Caregivers provides a refreshing and sobering counterpoint to these oversights. Accessible and clearly argued, Hunleth’s work offers insights for researchers and practitioners alike, with special relevance for those interested in global public health, epidemics and social change; childhood, children and families; responses to crisis; and care.

Hunleth’s monograph charts over a decade’s engagement with families and clinics in Zambia’s capital, Lusaka, during an unprecedented spate of TB infections and HIV co-infections. It combines carefully-observed ethnographic research with children’s drawings, self-recorded storytelling and commentary, to give a simultaneously intimate and expansive portrait of the impoverished compounds of the city. By drawing the clinic and the household into the same analytical frame (p. 110), Hunleth shows us both the intricate links and careful distinctions children produce between them, as well as the implications of these links and distinctions for public health interventions. She offers a compelling case for paying attention to children as ‘health agents’ in their own right, as well as unexpected sources of insight into the health agency of adults (p. 151). Children, in this conceptual approach, become key to understanding social change in the context of epidemics; and a distinctly relational sort of agency emerges, produced perhaps most powerfully between children and their parents. It’s an argument as relevant to research and intervention contexts from which children are excluded – as they were from early approaches to TB – as to those that target children in isolation from their social contexts, as often happens in approaches to HIV/AIDS and orphanhood.

Hunleth’s use of children’s drawings makes their concerns around practices of care visible in novel ways (p. 119).

Key to Hunleth’s argument is an understanding of children and their families in terms of deep-seated, carefully-cultivated interdependence. This emphasis allows Hunleth to strike a rare balance between the structural dimensions of TB in Lusaka’s compounds – chronic poverty, a lack of health care infrastructure, a proliferation of NGO and government programmes, and so on – and the creativity and agency that children and their families demonstrate in their responses to disease. The book’s subtitle, The Global Fight against Tuberculosis and HIV in Zambia, somewhat miscasts this contribution: while Hunleth’s story is framed in part by global interventions, it is ultimately worked out on an explicitly local, interpersonal level. Rather than a fight against TB and HIV per se, it describes a profound struggle to manage, live with, and relate through epidemic disease.

Accordingly, Hunleth forgoes the question of what a child is in contemporary urban Zambia – though by doing so, she downplays some potentially illuminating tensions in her material on this front. She argues convincingly that children are social actors equal in every way to adults, inclined to mirror, reinforce, and adapt adult responses, and that they provide meaning to everyday life through the relationships they sustain and reproduce (p. 48, p. 124). But she makes rather less of the unique unpredictability she describes among children, the distinct sorts of risk they present (especially to the ill; pp. 87-8, p. 95), and the special sorts of protection from illness or affliction they seem able to offer (p. 96) – an ambivalence that is socially generative in important ways. While symbolizing the potentials of modernity (p. 104), children may also portend dark futures (p. 97); while their caregiving is necessary and effective, if it is not carefully obscured it threatens moral crisis, especially for the women children help most (p. 136). I would surmise that it is in these frictions that children’s symbolic and practical capacities for producing change are located, and that in times of crisis the management of these frictions becomes imperative – a possibility that Hunleth’s work does not pursue, but opens up beautifully to researchers on related topics.

Children as Caregivers also makes a novel contribution to the burgeoning anthropological literature on care, by describing care as a process of ‘forg[ing] – or attempt[ing] to forge – a common vulnerability’ (p. 10), and by making children central to this process. ‘Being closer’ marks the appropriate response to communicable disease, rather than separation or quarantine. Thinking of care as deliberately sought, shared vulnerability, rather than an attempt to reduce or eliminate vulnerability, makes room for the ways in which it strengthens and equalizes relationships, while also producing additional risks and reconfirming hierarchies and differences. On Hunleth’s reading, care is more than vulnerability, too. It emerges as a sprawling, shifting, even internally contradictory set of practices and ideals, ranging from advocacy for well-being (p. 62) to encouragement (p. 116) to silence and concealment (pp. 94-95); from being close (p. 117) to avoidance (p. 139), to adherence, or simply medicine (p. 115). It is interchangeable with (women’s) work, is a form of ‘emotion work’ (p. 95), but is also more than work; it is more than ‘keeping’ (p. 62), more than help (p. 105), can be undone by naming (p. 95), and requires subterfuge (p. 133). It is gendered (p. 129), reinforces kin relationships (p. 121), and is key to managing and creating change (p. 129). Death, above all, marks a lapse in care (p. 115). The breadth, fluidity and indeterminacy of such an account strikes me as highly appropriate; care is frequently a loose, malleable concept, especially in contexts of crisis and intervention, where it has to be negotiated on new and contested terms. Hunleth takes it as read that a ‘crisis of care’ is afflicting Zambian families in the wake of TB and HIV, in line with dominant government and public health discourse; but her account also raises the question of whether care, understood thus, isn’t always in (and generative of) crisis, and whether crisis doesn’t give care its social relevance and shape.

The book ends by noting that since 2013, global TB interventions have finally begun to turn their attention to children, following the lead of the World Health Organisation. The wealth of questions Hunleth raises on the final page – what it means to be a child diagnosed with TB, who will be blamed, the effects of childhood diagnosis on personhood, life prospects, and familial relationships (p. 160) – also suggest a rich vein for future research. At the same time, Hunleth’s compelling arguments leave the reader with the sense that even such a major development might simply reinforce familiar dynamics: the inescapable interdependency of children and adults; the desire to share one another’s vulnerabilities; and the unquestionably creative, agentive pursuit of complex strategies on the part of children and their families to negotiate the structural constraints of their lives, and to ensure one another’s care.

Reviewed by Dr Koreen Reece, Research Fellow on the Global Anthropology of Transforming Marriage project at the University of Edinburgh. Koreen conducts research with families in Botswana, on the effects of the AIDS epidemic and the raft of governmental and non-governmental interventions that have followed in its wake. As well as children and childhood, she is interested in the ways crisis creates kinship, and the links it illuminates between the family, the state, and transnational humanitarian and development work. 

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