This workshop was designed to give PLHIV and advocates the tools needed to frame the epidemic and our issues in our own voices, presented by people living with HIV and advocates from around the world who work in grassroots and new media: Sonia Rastogi, U.S. Positive Women’s Network; Boniswa Seti, AIDS Rights Alliance of Southern Africa; Kellee Terrell and Olivia Ford, theBody.com; Kajal Bhardwaj, Indian lawyer and advocate for just intellectual property regulations; Mark S. King, U.S. blogger; Maria Mejia, U.S. blogger; and Silvia Petretti, Positively UK.

Rastogi opened the workshop by describing a human rights framework for media work; one which focuses on questions of rights, such as the rights needed for people to protect themselves from HIV or to make treatment decisions. This was followed by a panel discussion, moderated by Terrell, about panelists’ motivations for engaging in HIV media work, experiences, and strategies for getting stories heard and protecting against being tokenized by mainstream media reporters. Panelists described commitments to social justice, the practical need to work with reporters to get attention to HIV issues, and the desire to share information for and with people living with HIV.

Bhardwaj described a successful campaign by people living with HIV and advocates across Asia to gain global media attention to the complex issue of intellectual property restrictions. Using creative new media tactics combined with mobilization of increasing numbers of people living with HIV, they were able to gain global media coverage and, ultimately, convince the Indian government to promise to not trade away rights to generic medications in EU trade agreements.

King argued that communities and advocates cannot necessarily stop or change the tidal waves of stories about us in the mainstream news; therefore, blogging and new media are important for getting the stories across in our own words. Ford reminded the audience that human beings are behind every media institution and Terrell described the toll that funding cuts have taken on expertise related to health in newsrooms. Seti, followed by a number of other panelists, encouraged the audience to create strong relationships with reporters to help them to understand the issues and to gain support for sharing community stories.

Panelists and audience members addressed the blame and victim/perpetrator storylines common in mainstream reports about HIV, coming up with a variety of strategies for responding. These included focusing on shared responsibility and connecting responses to larger issues, such as lack of prevention education. Petretti made a compelling statement of the connections between the social inequities experienced by women and women’s vulnerability to HIV infection, demonstrating a way to shift from a story of individual blame to a rights-based framework.

Terrell ended the panel by stressing the importance of people living with HIV and working in AIDS Service Organizations to recognize where our expertise does and does not lie, and to educate ourselves on the issues to ensure that we do not perpetuate misinformation.  

The second half of the workshop was devoted to skills-building sessions on developing media campaigns, framing personal and community messages, blogging and social media, and video blogging.