In a new doc, filmmaker Cassandra Roberts explores the lives of women living with HIV
by Hank Trout
Cassandra Roberts, an Australian and British documentary filmmaker, was born in 1982. She attended Sydney University, graduating with a BA in Film Studies, Anthropology, and Gender Studies; she continued at the University of Technology in Sydney where she earned a Graduate Diploma in Media Arts and Production. After working as a production assistant at The Weather Channel, she moved to London and worked for a company producing corporate films before landing a job at the BBC as a researcher. “I worked full-time for the BBC editing and edit-producing their long-form documentary for broadcast on BBC World News. This was a dream job for me,” she told A&U’s Hank Trout, “and, I believe, the job that set me on the path to where I am now. After two years, I went freelance. Since then I have freelanced as a film editor, producer and story consultant across the world working on projects in the UK, Sydney, Auckland and New York. I have now turned my experience to directing.”
“Where she is now” is producing and directing a documentary entitled H.I.(SHE), examining the lives of women living with HIV. Cassandra’s interest in HIV as a subject began in 2015 when a close friend was diagnosed with the virus. Through his experience, she learned about antiretroviral treatment, learned and understands that U=U, learned about PrEP and other prevention tools. “Yet,” she said, “I was constantly surprised that he still experienced negative stigma surrounding HIV. It seemed so outdated, as if the common knowledge about HIV was still stuck in the fear of the AIDS epidemic of the 1980/90s.” Discussions with her newly diagnosed friend about ways to combat that stigma led Cassandra to think of making a documentary about gay men living with HIV.
However, “we both thought that there had already been a lot of films made about men. It was actually my friend who told me about some of the incredible women that he was meeting through his work with various charities and that perhaps this was what we should make a film about.” Her early 2018 research, though, revealed that “shockingly there had never been a documentary made about women’s experiences of living with HIV. And that actually there had never been many studies done either—especially in the UK.” The one resource she found was the “Invisible No Longer” report by Terrence Higgins Trust and the Sophia Forum.
That 2018 report was based upon two online surveys with women living with HIV and women interested in HIV prevention, and six workshops in which over 340 women added their stories to the project. Importantly, the project was co-produced with women living with and affected by HIV. The first report of its kind to address women living with HIV, “Invisible No Longer” revealed startling details about their lives. For instance, although women comprise one-third of the people living with HIV in the UK, they were absent from research, policy- and decision-making, from the design and availability of services. Nearly forty-five percent of these women lived below the poverty line, and over half had experienced violence in their lives. Forty-five percent felt that social barriers, e.g. stigma, prevented them from testing for HIV. None had chosen to access PrEP. “Invisible No Longer” strove to include all women, including trans women, women of any sexuality, any ethnicity, regardless of whether they have children, or are pregnant. While its results are both shocking and scary, the full report details a range of recommendations for action “to ensure that women are invisible no longer.”
Out of this knowledge came Cassandra’s determination to make H.I.(SHE), the work-in-progress documentary she is currently filming, telling the stories of women living with HIV around the world. Most of 2018 was spent doing further research and lining up participants willing to be interviewed on screen, and then she set off “to change the representation of women’s stories in the HIV narrative by giving women a voice.” Actual filming began in January of this year. “We will continue to shoot interviews over the next year and anticipate finishing H.I.(SHE) in late 2020. I want to tell a global story and, subsequent to funding being obtained, I will continue filming in the US, [the] UK and South Africa throughout 2019.”
Of the many things she has learned: “I think HIV-positive women face more stigma than HIV-positive men or at least different types of stigma,” Cassandra said. “Women are often left out of the narrative surrounding HIV. This exclusion goes right back to the 1980s. Without seeing representation on screens and through books and other media, women are less confident to speak out about their status. [But] I have been lucky in the UK to have been introduced to several women activists within the HIV community and through them I have met many other women who thankfully have been happy to share their stories.”
Due to intense stigma, many HIV-positive women are far more hesitant to discuss their serostatus than less reticent HIV-positive men. However, the women whom Cassandra has interviewed, or to whom she has spoken in person or met online, are, she said, “ready to tell their stories or to watch a film about other HIV-positive women.” Many, she continued, “are passionate about breaking down stigma and having a voice in the narrative surrounding HIV. They are tired of being left out and so were happy and excited to participate in the film.”
So far Cassandra and her crew have researched and filmed only in the UK. To fulfill her goal of telling a global story about women living with HIV, she needs and hopes to hear from and to interview more women, particularly women living with HIV in the United States and South Africa. “I hope that this film will help to change the representation of women’s stories in the HIV narrative by giving women a voice. I hope it will contribute towards normalising HIV, breaking down gendered stigma and enable other HIV-positive women to have the confidence to tell their story.” She asked that we encourage women living with HIV who would like to share their story to contact her at [email protected].
Once the film is completed (late 2020, she plans), Cassandra intends to take a time-honored route to her audience—offer the film globally on the film festival circuit, then seek distribution on television or a streaming platform such as Netflix. In the meantime, she hopes to fund the film through grants and private investors. Later this year the filmmakers plan to run a crowd-sourcing campaign, which is sure to be promoted on social media.
That friend of Cassandra’s who was diagnosed with HIV in 2015? “[H]e became empowered and started to give talks with Terrence Higgins Trust and other HIV charities and share his story so as to help others.” With “H.I.(SHE),” Cassandra Roberts hopes to open the conversation, to embrace the voices and stories of women living with HIV around the world.
Readers interested in reading the “Invisible No Longer” report by Terrence Higgins Trust and the Sophia Forum can check out https://sophiaforum.net/index.php/hiv-and-women-invisible-no-longer/.
Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-eight-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.