An antidote to stigma? the people living with HIV Stigma Index in Malawi and the United Kingdom (UK)

Abstract

Living with HIV today is a different experience for every individual. For some, taking treatment, seeking support, and accessing health services is routine and part of a wide selection of services and choices available. For others, information is limited, support insufficient or choices denied because of fear or marginalisation. Stigma relating to HIV still remains a significant challenge because it has an impact on the accessibility and orientation of services (not only health, but also legal, care and support services) as well as on the self-esteem and general quality of life. Conversely, stigma can also trigger positive forces for change and networks of solidarity that rise to challenge the social norms and practices that marginalise, stigmatise and discriminate. This chapter consolidates some insights about the process of The People Living with HIV Stigma Index from two very different countries and contexts-the United Kingdom (UK) and Malawi-and explores the notion of performative research through a discussion of power, participation and social change. The chapter does not review the detailed findings from the Stigma Index research nor does it explore the degrees and realities of stigma in these two very different contexts. Rather, it focuses on the reflections shared by some of the research team in both countries and their experiences of being involved in a common initiative-one that has a framework similar enough to be comparable but flexible enough to be adapted to the local context. Questions are explored about the potential of such an initiative as a transformative model for generating personal and social change in tackling HIV-related stigma.