Exceptional Suffering? Enumeration and Vernacular Accounting in the HIV-Positive Experience

Abstract

Drawing on 17 months of ethnographic fieldwork in Freetown, Sierra Leone, I highlight the recursive relationship between Sierra Leone as an exemplary setting and HIV as an exceptional disease. Through this relationship, I examine how HIV-positive individuals rely on both enumerative knowledge (seroprevalence rates) and vernacular accounting (NGO narratives of vulnerability) to communicate the uniqueness of their experience as HIV sufferers and to demarcate the boundaries of their status. Various observers’ enumerative and vernacular accounts of Sierra Leone's decade-long civil conflict, coupled with global health accounts of HIV as exceptional, reveal the calculus of power through which global health projects operate. The contradictions between the exemplary and the exceptional—and the accompanying tension between quantitative and qualitative facts—are mutually constituted in performances and claims made by HIV-positive individuals themselves.

Key words:

• HIV exceptionalism
• identity
• Sierra Leone
• statistics
• suffering

ACKNOWLEDGMENTS

Rosalind Shaw, Arthur Kleinman, and Byron Good provided early encouragement for the ideas presented in this article. For their incisive comments on multiple versions of this piece, I would like to thank Thurka Sangaramoorthy, Jennifer Liu, Crystal Biruk, and Esra Ozkan. Additional feedback from Laurie McIntosh, Ted Gideonse, Chanda Meek, and three anonymous reviewers helped to strengthen the final version. And finally, I would like to acknowledge the generosity of support association members, health workers, and other HIV program officials in Sierra Leone who shared their stories and perspectives with me.

Notes

HIV-related discrimination was rarely reported in the safe space of HIV support groups, suggesting that it did not exist on a large scale. Some people I interviewed indicated that they did not tell family or friends because of fear of reprisal or judgment about their sexual activities. Others said that they had experienced discrimination when they had other (non-HIV-related) illnesses and felt that HIV would be no different. Others maintained that they never experienced discrimination based on their HIV status, but on other factors, such as class or other social status.

Only recently have research studies examined whether stigma and discrimination might be produced through these exceptional programs (Jewkes 2006a, 2006b).

“New wars” have been distinguished from conventional wars in terms of tactics, actors, intensity, and motivation. According to Kaldor, who first highlighted this distinction (1999), the new wars are a mixture of war, organized crime, and massive violations of human rights. These wars are driven by criminal informal economic activities, or shadow economies (Nordstrom 2004). They may involve mercenaries and “warlords,” and a host of global and local actors, as well as public and private ones, so that the distinctions among these actors and their role in the war are difficult to ascertain.

I use calculus here to highlight the role of calculation and counting as central to these concerns. In the mathematical sense, calculus involves studying limits, change, functions, and the infinitesimal; in a physiological sense, calculus refers to concretized blockages, which I feel also characterize the hardening effects and nature of power and its operation in transnationally mediated social welfare programs.

I use nonenumerative instead of qualitative as a reminder that not all nonenumerative accounts are qualitative (or in-depth) evaluations of an aspect of social life or inquiry. See Note 6.

From the perspective of the anthropologist and many of the local communities who regularly deal with expatriate NGO representatives, however, these accounts are often thin descriptions based more on stereotypes and NGO commonsense premised on a presumption of African vulnerability and wounded subjecthood, rather than on a deep, extended engagement with local meanings and interpretations of social life.

The NGO-government-multilateral schematic employed here is only one of many typologies that could be used to discuss the tensions arising around modes of representing suffering and addressing community needs for care and support. I use it here because it is salient, not only in the particular case I describe in the article, but also in my years of working in monitoring, evaluation, and research for global health and development programs. Over the past decade or two, NGOs have focused on building their capacity to represent the effectiveness of their programs, and whether intended or not, indicators of program effectiveness and success have tended toward the numerical. At the same time, advocates within NGOs, in particular, realize that program-inspired social change and impacts have a qualitative component. Observing such changes often requires extended engagement with communities and a more extensive narrative account of changes witnessed by community members and program staff “on the ground.” In addition, NGOs often highlight—in publicly disseminated materials and in grant applications to government and foundations—their proximity to the field (or “the people” or “communities”) to legitimate claims they make about the success of their strategies in a variety of “resource-poor” contexts. Governments, unlike NGOs, have fewer legitimate qualitative tools at their disposal to measure and convey their success in biopolitical projects of governing, monitoring the welfare of and taking care of its citizenry.

I worked with an organization that addressed gender-based violence (GBV) in Sierra Leone in late 2003 to early 2004, and for a few months during my field research (June 2006–December 2007), and recognize it to be a serious problem. However, when I talked to dozens of women and reviewed accounts from hundreds, I found that they were also troubled by the family members (and possessions) they lost in the war and their inability to make a good living in the camps.

During my work with the GBV program (see previous), the Human Rights Watch Report was one of the more widely cited reports on sexual violence in Sierra Leone. A report by Physicians for Human Rights, also widely cited, attempted to measure the prevalence of sexual violence among Sierra Leonean women during the war.

The International Crisis Group (ICG), a liberal public policy group that monitors conflicts throughout the world, deemed the disarmament process in Sierra Leone as a “missed opportunity to encourage citizens to reconsider the modes of domination and governance that had been among the causes of war” (2004:24). There are other examples of programs that aimed to retool the moral constitution of the Sierra Leonean.

The extent to which these states and effects can be remedied by humanitarian and development actors will remain contested (Escobar 1995; Ferguson 1994; Malkki 1996; Pigg 1992, 2001).

I say “appears” because these debates—albeit less publicized—have taken place within organizations, even as these same organizations attempt to “mainstream” HIV/AIDS components into their programs in compliance with donors’ demands. HIV exceptionalism has also been criticized by a variety of public health advocates and by people suffering from the so-called neglected but prevalent diseases like sickle cell anemia (Fullwiley 2004).

The survey (blood samples and behavioral information was taken) covered accessible areas that were occupied by 79% of the country's adult population. Although sexual violence was reportedly high in Sierra Leone, the relatively low prevalence among pre-war populations, peacekeeping forces, and paramilitaries might not have been sufficient to accelerate HIV infection in the population (Kaiser et al. 2002). For additional information on sampling techniques used in both the 2002 and 2006 studies, see Kaiser and colleagues (2002) and the Ghana report available from the Government of Sierra Leone.