Book Review: HIV Exceptionalism: Development through Disease in Sierra Leone

HIV Exceptionalism: Development through Disease in Sierra Leone. Adia Benton, Minneapolis: University of Minnesota Press, 2015, 176 pp.

As the Sierra Leonean civil war came to an end in 2002 and much of the humanitarian infrastructure and attention shifted away, the Sierra Leonean government and in-country NGOs were forced to reckon with a changing landscape of funding and an ambitious post-war development agenda. That very same period marked an unprecedented proliferation of momentum and resources for HIV prevention services, at the behest of global public health experts and advocates alarmed at the neglected HIV crisis in the Global South. Much of these resources were specifically tagged for programming in impoverished African countries like Sierra Leone. The only problem: Sierra Leone’s HIV prevalence rate was measured at 1.2%, one of the lowest on the continent. In order to gain access to these resources, actors high-up in the Sierra Leonean central government, the Ministry of Health and in-country NGO representatives successfully re-framed the country as one suffering—or soon to suffer from—a grave HIV epidemic. By 2004, over half of all money allocated to government and NGO health programs in the country was directed at HIV prevention efforts, despite the relatively small HIV epidemic compared with overwhelming broader public health problems in the country (p. 7).

Adia Benton’s HIV Exceptionalism: Development through Disease in Sierra Leone tracks these shifts as they unfolded in Freetown in the early 2000s. The book is a thorough analysis of what happened as funding, resources, ideologies and values surrounding HIV’s assumed “exceptionalism” circulated through the Sierra Leonean government, national health system, NGOs and patient advocacy groups. Benton critiques the tendency for HIV programs to be “ideologically vertical” and to separate HIV-focused programs from broader health systems. But she also asserts that HIV produces a “methodological horizontality,” or a “tendency to creep and seep into all kinds of development and health programming” (p.7). Much of this book is concerned with documenting and critiquing the assumptions that underlie this “seep” into media, politics, clinics, patient-support groups, sexual morals and subjectivities. Benton argues that the assemblage of interventions that have emerged in this low-prevalence country inherently reinforce the disease’s “exceptional status” by creating new hierarchies of patient worth, reifying inequities among patients, and promoting specific strategies of disclosure and visibility for newly-diagnosed patients.

The introductory chapters set the stage vis-à-vis the controversies regarding the country’s measured prevalence rates in the immediate wake of a brutal civil war. Benton raises questions about the prevailing common sense within HIV public health scholarship that conflict, sexual violence, mass migration, poverty and economic instability necessarily serve to increase HIV transmission. As Benton recorded one development worker saying: “You wonder how people in Sierra Leone do all the wrong things, and there’s still no HIV problem” (p. 12).

Much of this debate in Sierra Leone emerged in 2002, when a Save the Children Report articulated a specific link between conflict and the spread of HIV at the same time that a CDC-run sero-prevalence study documented an HIV rate less than 1% in the country. In-country health workers as well as Sierra Leonean government officials responded that the CDC numbers must be incorrect given the massive instability during the war—or at least the social “normalization” processes occurring in its aftermath. These tensions continue to inform how the epidemic is understood and prevention programs are designed, often precluding a grounded knowledge of HIV in the Sierra Leonean context.

Much of Benton’s research took place in the many HIV support groups that have emerged in Freetown, which serve as gate-keepers to donated material resources and in which ideal behaviors, practices and patient-narratives are discussed and modeled. In Chapter 2, Benton describes how, in the low-prevalence context, HIV is purported to represent a “unique experience of suffering” (53) distinct from the more routine health problems and poverty the majority of Sierra Leoneans face. Paradoxically, resources are available in much greater supply for HIV compared to other health and development programs. Thus, competition for access to HIV-tagged resources lies more in whether one can adequately establish oneself as HIV positive, rather than as particularly needy among HIV patients.

In Chapter 3, Benton describes “disclosure” of one’s status as an assumed “model” behavior for HIV-positive patients in Sierra Leone. The moral discourse surrounding disclosure equates being vocal about one’s status to a form of responsibility and redemption after contracting the virus, and associates secrecy (or privacy) with denial, shame and fear. Engaging other anthropologists of the Mano River region, Benton describes how these logics not only reify HIV patients’ exceptional status in the country (and perhaps the stigma directed against them as well), but are also often in conflict with the cultural significance of secrecy as a form of protection and respect in Sierra Leone.

In Chapter 4, Benton explores the practices and hierarchies of behavior espoused in support groups, as members taught how to successfully “live positively” with the disease. She traces some of these values to specific strategic documents from UNAIDS and others that,

in an attempt to achieve greater “involvement” of people with HIV in prevention strategies, emphasized the utility of support groups and patient role-models in HIV programming. These programs underscore the role of self-reliance, adherence to medication, proper sexual practices, will-power and optimism in being a model HIV patient. As a result, Sierra Leonean HIV patients must master a paradoxical set of narratives: they must demonstrate their active participation in and adherence to these principles of “positive living”, while also performing their continued, unique vulnerability as HIV patients to ensure that resources are not cut off.

The final chapter looks at these issues in political spheres. Benton argues that the Sierra Leonean Government’s public claims of effective stewardship over the HIV population—directed at citizens but largely at the international community— have come to serve as a surrogate measure of good governance. Benton also challenges other anthropological analyses that have suggested that HIV patients in West Africa direct their demands for rights and care more towards a global order than their impotent and “receding” national governments (136). The interplay between government appeals for HIV patients to modify sexual practices as a commitment to national progress, and patients’ expectations of care from the State, remains a vital way through which issues of justice, power, citizenship, national welfare and care are publicly negotiated.

Nearly all of Benton’s ethnographic vignettes take place in inherently performative spaces: funerals, public offices, press conferences, newspaper articles and support groups. Thus, it makes sense that so much of the work is focused on these issues of public narrative, model (and modeled) behaviors, politics, and visibility. There are moments in the work that suggest that, alone, in their homes and with their families, some of Benton’s interlocutors may have faced more complicated, ambiguous internal processes of reckoning with—or even resisting—the ideologies taught to them in their support groups. We encounter many of their stories through long, public narratives at support group meetings and in formal, bureaucratic settings. We learn a lot about how individuals “navigate a variety of social and political terrains through their HIV status”, but given the complex nature of performed narrative and power in Sierra Leone, I’m not sure that this is sufficient evidence to make claims about a “holistic modification of the self” that, Benton argues, so often follows a diagnosis (143).

But Benton’s work primarily serves as a critique of a set of logics that have led to this influx of resources for a small patient population in the setting of overwhelming poverty—the unintended moral economies and the “exceptional forms of exclusion and privilege” (p.145) that result. And the book does provoke reconsideration of a number of assumptions regarding the experience of living with HIV and the ambiguous nature of the stigma that is presumed to accompany it. A specter hanging over this work, of course, is the new entanglement of funding, patient activism, appeals for behavior modification, visibility and “participatory” programming in Sierra Leone directed at the relatively small number of Ebola survivors suffering from devastating Ebola sequelae. This book serves as a critical call to those in the public health field to be wary of health programming that so imbalances comprehensive healthcare services in an effort to target a health problem that is perceived as exceptional, emergent and urgent. Benton’s lucid and methodical ethnographic writing serves as a stark counterpoint to the “generalizable” ideologies of HIV prevention programming that she critiques throughout—and as a reminder that these logics can so easily obscure the unanticipated and dynamic states of illness, health and care among patient communities, on the ground.

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