Representations of HIV/AIDS on film have considered the science of disease, the people affected by it, advocacy campaigns for treatment, government failure, social stigma, politics, and personal stories of courage and love. Films such as We Were Here, How to Survive a Plague and Fire in the Blood have had a significant impact on me; firstly because of the stories that you think you know well have deeper resonance when they become personalised, and second because I see the impact such films have on my students when I screen them as part of the postgraduate module ‘Global Politics of Health’ I teach at Queen Mary University of London (QMUL). You can tell people shocking statistics, explain stigma and the politics of Mbeki denialism, but there is something about film that gets people to feel things, and in my experience when students feel something they want to find out more, to look for explanations, and deepen their understanding.
It is these excellent films that led me to want to make this film. Not just because of their quality (and really if you’ve not seen them, I would encourage you to do so) but because they tend to miss a significant part of the history of HIV/AIDS. Not all (hello Fire in the Blood!), but the majority of these films focus on the 1980s and the quest to demand rights and access to treatment, to ameliorate stigma, and promote understanding, love and, crucially action. These are important stories to tell and they should not be forgotten. However if these films alone are to represent the history of HIV/AIDS then they miss the voices of a very important demographic, the 52% of people living with HIV/AIDS in the world: women. The majority of whom live in eastern and southern Africa.
To make a film about the everyday politics of HIV/AIDS the start point for me was to ask the classic feminist question – where are the women? And the more I thought about that question, the more I saw they were either absent or had minor parts in the wider film narratives about HIV/AIDS. This was a glaring gap given more women are living with HIV/AIDS in 2015 than men. More women take on care roles for the sick – care for family members and community members as home-based carers – and for their children in efforts to prevent transmission than men. Any film that I was to make about the everyday risk of treatment and care would have to involve women. However the more I thought about it the more I realised involvement was not enough: women would have to be the central focus. They would be the central characters and voices of the film, and we would shoot the film in a way that would allow them to tell their own stories and write their own narratives in the history of HIV/AIDS. The film would not be a set of the usual suspects of global HIV/AIDS advocates (although if our plan all goes wrong, please do take my call Piot/Clinton/Achmat) but will be the unknown women whose stories have not been heard.
The problem is, of course, whether these women will want to tell us their stories, or if they will just tell us the stories we want to hear. In making a film about people’s lives I feel an enormous duty of care to ensure they know exactly what we’re doing (my Swahili has always been pretty ropey) and that their lives will be protected from unnecessary stigma and unwanted attention. Making a film that focuses on women living in rural communities is a much more difficult and costly endeavour than filming an average documentary: we’re going to need a fleet of interpreters, but not so many that the crew becomes intimidating and untrustworthy; we’re going to have to spend time gaining trust and promoting mutual understanding. All of these things take more time and money than interviewing policy peeps, splicing it with some Tanzanian sunsets and archive footage. Moreover the patriarchy is alive, well and thriving in Tanzania so convincing collaborators and community workers that the film is going to focus on women alone may be tricky. But for every difficulty, I will feel a sense of smugface if/everytime someone asks me, where are the men?