The lived experiences of Black African women living with HIV have for the first time been brought together in a new book.
‘Our Stories Told by Us: Celebrating the African Contribution to the UK HIV Response’ brings together 40 contributors who tell their stories about the HIV landscape, their resilience and how it has evolved over the last 40 years.
The editors are Angelina Namiba (from Kenya), Winnie Ssanyu-Sseruma (from Uganda), Memory Sachikonye (from Zimbabwe), and Rebecca Mbewe and Charity Nyirenda (from Zambia). Discussions about the idea of the book started last year, as Rebecca explains:
“It was the 40th anniversary of the first reported case of HIV,” she recalls. “So we thought, rather than just us five, can we find 40 writers to share their experiences - asking them to detail their journey from where they started and how they got involved in the HIV experience, to where they are now.”
The contributors were drawn from the personal contacts of the five editors.
“Its not just about us and other people living with HIV, it’s about our allies as well,” Rebecca explains. “People who were there at the start and that we’ve met along the journey, like commissioners and HIV consultants.”
Rebecca has been engaged with the HIV sector for over 20 years in her personal capacity as a woman living with HIV, as well as professionally working with various organisations. She also works as a Research Assistant in Applied Health Research at the Sexual Health and HIV All East Research (SHARE) collaborative. Founded in 2021 and established in the heart of east London’s diverse community, the SHARE Collaborative is investigating the inequalities that lead to poor sexual health and HIV. SHARE is embedded within one of the largest NHS Sexual Health and HIV services, bringing together the expertise of Barts Health NHS Trust, and Queen Mary University of London.
Chloe Orkin is Professor of Infection and Inequities at the Blizard Institute and the Director of the SHARE Collaborative. She explained Rebecca’s contribution to SHARE:
“The SHARE model of community engagement goes beyond having external community advisory boards. Instead, we recognise the value of community research and engagement experience as equivalent to academic experience. We appointed Rebecca as a research assistant within our group both to help us deliver our trials and to inform future research. Diversity of researchers enhances novelty.”
Rebecca hopes that Our Stories Told by Us will serve as more than a historical text:
“I hope that the book will re-ignite the conversation around HIV, because I feel that a lot of people are under the assumption that HIV is no longer an issue. Treatment has really progressed - so much so, that we now have people growing old with HIV. We want people to recognise that it is a long-term health condition rather than the ‘death sentence’ it was regarded as years ago. But the stigma hasn’t changed at all. And what that does is prevent people from going to be tested. So we need to keep the topic on the agenda.”
‘Our Stories Told by Us: Celebrating the African Contribution to the UK HIV Response’ is available now at OurStoriesToldByUs.com.
For media information, contact: