By: Arbër Qerka-Gashi
Ever since I started my role with the NHST and the HIVstory Project, I’ve often reflected on how important it is to listen to the stories of elders in the HIV-positive community. Sharing their lived experiences has always offered me a powerful reflection of a historical period that still remains deeply underrepresented. Working closely with the founder of the NHST, Paul Coleman, has furthered my understanding, but more importantly raised one particular question: why do so few people from my generation (I was born in the late 1990s) not know about what happened during the HIV and AIDS crisis of the 1980s and 1990s?
While shows such as It’s a Sin have brought these themes back into our homes and conversations, I noticed that discussions with my peers were often marked by historical inaccuracies and, at times, a lack of understanding. At the same time, through working closely with the generation that experienced HIV and AIDS at its height, I also observed that, much like my peers, there was sometimes a limited understanding of the challenges faced by communities living with HIV and/or AIDS today.
This intergenerational gap was something I felt compelled to address, particularly through my role in this placement. Working closely to record Paul Coleman’s legacy story, both his personal experience of living with HIV and the history behind the development of the NHST, was an incredibly cathartic experience. I wanted to build on this sense of intergenerational reflection and sharing by curating an event that brought people together from diverse backgrounds and generations to share their lived experiences and what living with HIV means to them today.
So, I produced Before Us, Between Us: HIV & AIDS Stories Across Generations, an event designed to create a space where individuals could openly express their different experiences of HIV and AIDS, while exploring how connection and understanding can be built through these differences rather than maintaining separation. I invited speakers including Susan Cole-Haley, Ellie Harrison, and John Stevens, all of whom represented distinct lived experiences that challenged many of the societal misconceptions surrounding who can be HIV positive.
The event was held at the beautiful The Common Press in East London, and despite a Tube strike disrupting travel across the city, we had a great turnout, a testament to the importance of hearing and sharing these stories.The evening began with a short screening of the feature film that the NHST hopes to produce in the future. It provided an important contextual foundation for the significant work that NHST and the HIVstory Project have been developing over the past few years.
I then moderated a conversation with Susan, Ellie, and John, and they truly were a fantastic lineup of speakers.Hearing John speak about the challenges faced during the height of the HIV and AIDS crisis in the UK, particularly in London, was especially poignant. He also reflected on the occasions in which he has found himself explaining this history to younger generations because of the limited awareness and understanding surrounding that period.
Equally important, hearing Ellie’s perspective, now in her late 20s, illustrated the misconceptions she faced as a woman who was diagnosed with HIV just a few years ago. She spoke to the lack of information many in her generation have about HIV and AIDS, and how stigmas established decades ago still persist today. Ellie’s openness brought much needed diversity of experience to HIV and asked us all to challenge preconceived notions about who can contract HIV.
Susan offered an intersectional perspective on HIV and AIDS. One of the challenges that the NHST and the HIVstory Project are actively working to address is the fact that prevailing narratives of HIV are often confined to specific demographics. Hearing Susan speak about her work directly supporting Black communities affected by HIV and AIDS reminded us of the importance of centering diverse voices when discussing and presenting narratives related to these themes.
The event then moved into a lively Q&A session, where both people with lived experience of HIV and those without contributed thoughtfully to the discussion. Each contribution added something valuable to the conversation. This was exactly my intention in producing the event: to encourage dialogue across identities, experiences, and generations.
The feedback has been overwhelmingly positive, with attendees speaking passionately about the importance of creating spaces for these conversations. I am hopeful that this will not be the last event of its kind. Given the NHST and the HIVstory Project’s ongoing commitment to sharing stories and amplifying diverse lived experiences across the country, I am confident that events like this will continue to happen. I look forward to hearing more of the conversations that this event has helped to begin.