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Choosing rights : the puzzle of the rights frame in human immunodeficiency virus activism Kenyon, Kristi Heather


HIV activists are at the vanguard of a critical point of expansion in the use of human rights discourse in advocacy, marking a site of civil society innovation. Drawing frequently and emphatically on rights in place of more traditional frames of development or public health, civil society groups working on HIV provide valuable insight into how and why the language of rights is being adopted in new fora. This dissertation examines why civil society groups conducting advocacy on HIV in sub-Saharan Africa, the region of the world hardest hit by the pandemic, choose to (or choose not to) employ the language of rights in their advocacy. Using a comparative case-study approach, this study examines nine civil society organisations conducting advocacy on HIV. Organisations were selected from countries (Ghana, Uganda, Botswana, South Africa) in the three regions of sub-Saharan Africa (West Africa, East Africa, Southern Africa). Within these countries, civil society groups were identified with variation in regards to their use or non-use of the rights frame. A total of 145 semi-structured interviews were conducted within these organisations, as well as with other organisations in the HIV sector, international organisations, and government officials. Data from interviews was triangulated with information from naturalistic observation, analysis of organisational materials, and laws and press accounts. These case studies highlight the roles and beliefs of individuals, as leaders, advocates and recipients. Organisational adoption of rights is heavily influenced by leadership, and by secretariat-based organisational structures which allow for a high level of interaction with leaders. Within these groups, a strong personal belief in the rights frame is common. The chief motivation for rights use in advocacy within these organisations is rooted in a belief that the rights frame has a profound impact on the identity and behaviour of the group’s constituents. Proponents understand rights as an empowering force enabling their target group to better seek and access health care services and to do so from a position of strength and entitlement. In contrast, in groups with limited or no rights use, need-based claims highlighting vulnerability were dominant.

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