What only heaven hears: Citizens and the state in the wake of HIV scale-up in Lesotho

Abstract

This dissertation poses a set of questions about the political impacts of the rapid and large-scale deployment of HIV programs (HIV "scale-up") in Lesotho. As HIV and global health initiatives have expanded over the past decade, they have had sociopolitical, as well as epidemiological, impacts. In particular, HIV scale-up elicited and demanded new political processes that continue to change how policy is crafted, how citizens are represented, and which values drive new health initiatives. More fundamentally, HIV initiatives have altered the ways that citizens, patients, and communities perceive themselves, the state, and their political worlds. Utilizing multi-sited ethnographic methods, this project observes how citizens in Lesotho are coping with these dramatic changes in their political worlds. The research reveals HIV scale-up's considerable and far-reaching impacts on citizen faith in democracy, perceptions of rights, access to key social protections, and feelings of belonging. In contrast to work on the impacts of social movements, activism, and political will on HIV policies, this dissertation inverts the causal direction of inquiry regarding health and politics. In doing so, it recognizes new global health movements as drivers of political change, mobilizing actors and resources in deploying programs in ways that are altering political worlds and subjectivities. A rich recent literature on biological and therapeutic citizenship in the time of AIDS has begun recognizing these trends and their impacts on patient subjectivity. This research expands the frame of inquiry to examine how public health interventions can also alter citizen subjectivity, expectations of democracy, and the structures of associational life. The dissertation also contributes data towards better understandings of recipient populations' perspectives on accountability, good governance, public-private partnerships, transparency, and participation—approaches currently touted as solutions to poor project outcomes. For citizens in Lesotho, these initiatives still look very much like anti-democratic enterprises. Field research was undertaken in two sites surrounding different clinical care models: the first was a government-run primary care clinic, and the second was a factory-based clinic in the country's garment industry, where a public-private partnership provided HIV services to workers. In both sites, research extended far beyond the clinic. In the former site, this meant working with: peri-urban communities served by the clinic; two support groups struggling to build partnerships with NGOs; local government institutions tasked with managing the HIV response; and traditional healers, community health workers, and patients giving and seeking care outside the clinic. In the second site, this meant exploring dynamics of discipline, productivity and "ethical" production in a transnationally-linked industry, as well as the social lives of workers outside their work. Though largely unforeseen by most global health actors, HIV policy has become an extremely effective delivery mechanism for specific political ideologies and ways of practicing politics in poor countries. Research conducted in these sites demonstrates that the expansive, far-reaching scale-up of HIV programs has fundamentally changed ideas about what citizens deserve, who is deserving, how decisions will be made about services, and who takes responsibility for services, and ultimately, the survival of citizens. The predominant experience of politics for most citizens in post-scale-up Lesotho is a feeling of abandonment, of not being heard. The research thus raises significant normative as well as pragmatic questions about the role and responsibility of global health projects in already fragile political systems, and the potential impacts of the political changes described here on patterns of health seeking and ill health in countries like Lesotho