Speaking Volumes aims to combat misconceptions and ignorance about living with HIV. Participants attended creative art and storytelling workshops before their stories were recorded. These 15 recordings form the centrepiece of the installation, with each “volume” displayed in a hollowed out book on the Speaking Volumes bookshelf.
The project highlights the diverse experiences of people living with HIV: men and women, aged from their 20s to their 70s and 80s, parents and people with disabilities, hailing from the UK and around the world. Each volume is broken into a number of chapters, or audio tracks, based on themes such as diagnosis, treatments and side effects, sex and relationships, work, spirituality, isolation and support.
The installation at Hastings Library marks the project’s first East Sussex exhibition location. Abigail Luthmann, Equal Access Manager for ESCC libraries, saw the installation in Brighton and was so impressed that she asked if ESCC libraries could host the exhibition. “For libraries, stories are what we are about - factual or fictional,” she says. “Listening directly to someone’s own story is a very powerful way to understand a different perspective and experience of life. As some of the participants are East Sussex residents we are particularly pleased to be able to host it.”
Speaking Volumes Project Manager and Director Alice Booth notes, “The project was particularly relevant to Sussex as it's an area where there is higher prevalence of HIV than the national average - especially in Brighton and Hove, but also in Hastings.”
The project was inspired by “human libraries”, where people who have encountered some sort of stigma or oppression can be “borrowed” to talk to a member of the public about their experience. “I thought this was a great idea and would be a brilliant thing for HIV positive people to do,” says Alice Booth. “But I was aware that the stigma associated with the condition meant that lots of people who would like to share their story would be reluctant to appear in public.” The format of Speaking Volumes allows participants to be as identifiable or anonymous as they wish.
HIV: evolving treatments, evolving attitudes
People diagnosed in the first few years of the AIDS crisis in the 1980s saw partners, friends and communities dying around them. Elfrid Walkingtree, who was diagnosed HIV+ in 1989, comments that, of the support group he attended at that time, “I am the only person alive today. Everybody is dead.”
One participant became ill in the mid-1990s and started on anti-retroviral treatment, which had become available only months before. Two of his friends died that year, choosing not to try the treatment. “I know now that if they had started anti-retrovirals they would very likely have lived,” he reflects. “But at that point we’d had maybe eight, nine years of different research medication, different trials and nothing had worked for anyone for longer than six months with lots and lots of side effects - so why think this would be any different?”
These decades of ignorance and shot-in-the-dark trial medication seem to have come to a close, with many participants diagnosed HIV+ in the last few years receiving swift, respectful and effective treatment, as well as greater understanding and support from friends, family and support groups. Scott, diagnosed in 2013, thanks those people who were “guinea pigs” in a process that has allowed his diagnosis to lead to him feeling healthier ever before.
“The general public, I feel, still do not realise that HIV is no longer a death sentence,” says Scott. “They need to be educated. . . people need to know.”
Although Scott’s story is largely positive, it took several misdiagnoses from his GP before he decided to get tested for HIV. In the meantime, he had become seriously ill and, as a result, had lost his job. Other participants speak eloquently about negotiating diagnosis and treatment in the workplace, as well as the shock, disbelief, relief, grief and numbness they felt following their diagnosis.
Questions about if and when to disclose HIV+ status to colleagues, family, friends and partners also continue to play a big part in the lives of people living with HIV.
Angelina Namiba was “closeted” about her HIV status in her first relationship post-diagnosis. “Of course, we practised safer sex. But it was quite difficult because I couldn’t be myself in my own house. I had to hide any literature about HIV, you know. It was really hard - being a stranger, almost, in your own home.” Now, she says, she would disclose sooner rather than later. But “it’s a bit of a dilemma,” she adds. “Sometimes I like someone to get to know me so that they know me as Angelina, rather than Angelina-the-virus.”
Lin Stevens Yian was living in Taiwan with his partner when he tested positive for HIV. His doctor was required to report the diagnosis to the authorities, who then informed him that, as an HIV+ foreigner, he was no longer legally allowed to live in Taiwan. He had to leave within 14 days of taking the test or be deported.
At the time of recording his story, he had been living apart from his partner for two years, unable to work due to his illness, and therefore unable to meet the UK government’s income requirements in order to bring his partner to this country.
The deeply personal stories in Speaking Volumes resist neat narratives about progress. But visitors who take time to listen to at least parts of a number of volumes will come away with a richer understanding of the history of HIV in the UK and renewed appreciation for the unique experiences of local people living with HIV today.