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The importance of narrative in HIV/AIDS patients' movements (United States, South Africa)

Case study | |

Since the early days of the HIV/AIDS epidemic, narrative approaches have played a central role in empowering people living with HIV and AIDS. Community activism, triggered in part by the unwillingness and unease of politicians, the media and mainstream society to engage with the challenges posed by the epidemic, has opened up new spaces in which the voices of those affected can be heard. In the 1980s, for example, the People With AIDS (PWA) self-empowerment movement in the United States of America was among the first to insist that those diagnosed with HIV and AIDS should participate in the decisions that directly affect their health and lives.  

Elsewhere, social movements have used narratives to garner public and political support for their campaigns. In South Africa, for example, the work of the Treatment Action Campaign has not only helped to make antiretroviral treatments more affordable within low and middle-income countries, but also to reintegrate large numbers of isolated and stigmatized people into a caring and widespread activist community.   

The voices from the early HIV/AIDS patient movement continue to resonate today. For example, narrative based initiatives – such as Project SIGMA in the United Kingdom, which conducted research on homosexual behaviour by engaging men who have sex with men to keep daily journals of their activities – are providing valuable insights into the problems arising from increased reliance on biomedical HIV prevention.  

As well as providing an important critique of biomedical and sexological approaches to HIV/AIDS, these narratives have highlighted how culture can shape the meaning of sexual experience and how people interpret and understand sexual practices. They have led to more informed sexual health programming and have inspired a range of other health-related social movements worldwide. 



Photo by Anna Dickson on Unsplash

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