by Lucy Stackpool-Moore
(part 1 can be read here)
Speaking freely about living with HIV
In 2006, Panos worked with members of three HIV social movements in Southern Africa (Khululeka Men's' Support group, Treatment Action Campaign [TAC] and the International Community of Women living with HIV [ICW]) to collect and learn from life stories of people living with HIV in South Africa and Namibia. We were looking to learn more about the communication dynamics that can support people living with and affected by HIV and those that sustain informal networks such as social movements.
Voice was central in the project for two main reasons:
1) to listen to the nuanced realities of complex, vivid and individual life stories and inform our understanding of the key issues
2) to give voice to interviewers and narrators involved with HIV social movements
Many of the narrators described moments of intense despair and hardship relating to their early experiences of diagnosis living with HIV. Many (but not all) then described a journey of survival and hope supported by friends, family and others living with HIV, as well as access to essential services and treatments.
Lucy Stackpool-Moore is Programme Officer for Panos
The main issues discussed included men and masculinity, fertility, gender relations, positive relationships, religion, childhood, abuse, politics, resistance, coping and support. These spanned aspects of personal change and finding appropriate support; and social change in exercising visibility, speaking out in the community and advocating for specific policy change to reflect the priorities of people most affected by HIV.
In South Africa, one of the narrators spoke about the importance of involving men to confront gender violence and was part of the ‘men as partners' programme run by Engender Health. He spoke about the dynamism of the Xhosa culture.
"My culture is the African culture, the Xhosa culture where I come from it respects women. Women are seen as co-partners all the time but unfortunately along the line it has been destroyed by some men.... I paid lobola [bride price]. I was not paying money to buy my wife but I was expressing to her family a thank you for molding and shaping a woman like [her]... We need to start transforming to the lives of our communities, for the people to begin to understand what it is to be an African."
(Member of TAC, South Africa)
The diversity of the individual stories within the collection highlights the complex and holistic nature of HIV and the many dimensions of people's lives it affects.
Although the core group of 10 interviewers were generally comfortable speaking freely about HIV, many commented that their involvement had challenged their own views and helped them come to terms with aspects of their own life stories. One of the interviewers from TAC said "those people who I interviewed - they also make me strong". Speaking out was an end in itself, as well as providing a collection of the diverse and unique perspectives of each of the individuals interviewed.
It takes courage to speak out
The kind of change necessary to tackle inequality is complicated and slow. It will take time, courage and openness to successfully overturn the links between gender violence and HIV.
It will mean speaking out about difficult and intensely personal issues. Yet in doing so, people most affected by gender violence and HIV can make themselves heard-they can take a lead in overturning the vicious cycle feeding stigma and marginalisation to form a virtuous cycle of inclusion and social justice.
