In Our Own Words
Paul Coleman & the Team at the UK’s National HIV Story Trust Are Filming/Archiving Long-Term Survivors’ Stories
by Hank Trout

Paul Coleman was aghast when, in 2015, he heard a news report that said “People with HIV can now take just one pill a day and live a normal life.” Paul, a BAFTA-nominated director, knew better. “My whole gay family had been affected by HIV or died of AIDS and some stories from those times haunted me for years—they still do. [The report] enraged me. It felt as if we were about to have our history erased, and for long-term survivors it just wasn’t true they would live ‘a normal life’ and anyway what exactly was a ‘normal life’? In that moment I realized ‘people are forgetting us and our history.’ I couldn’t sit back and watch that happen.”

Thus was planted the seed that grew into the “AIDS Since the 80s” project, with Paul as its Director, now called the National HIV Story Trust. The NHST aims to preserve the history of the pandemic in the UK, primarily through filmed interviews with survivors from that era to be archived at the London Metropolitan Archives, as well as a feature film comprised of the interviews, photo exhibits, and musical and dance performances. The London Metropolitan Archives (LMA) houses a diverse collection of archives, images, records, maps and films which help researchers in all aspects of London’s history. Paul and his team have already filmed one hundred interviews, amounting to over 150 hours of film, which have already been archived at the LMA. Coleman and his team intend to collect many more stories from people affected by HIV/AIDS over time.

“As a gay man, I want people to understand our history and the history of AIDS in the UK,” Paul told A&U, “but I also want people to see the diversity of people who live with HIV and to explore the diversity of experience that reveals.” As a result, while gay men comprise most of the project’s subjects, just as most of the people who acquired HIV were gay men, the NHST is diverse by design, gathering the experiences of men, women, transgender folks, gays, straights, all races, UK-born and migrant, as well as those [who acquired HIV] through blood transfusion and drug use. Eventually, the filmed interviews will be available to researchers, historians, and the public at the LMA and online. “{W]e hope to make several interviews available every few weeks,” Paul said. “The full archival procedure to make them searchable will take somewhat longer and is undertaken by the LMA.”

The full-length film featuring the interviews aims to record the HIV/AIDS story, in survivors’ own words, and to remember what it was like to live through the loss of so many friends and lovers. Just as it was in the United States and elsewhere, in the 1980s a positive HIV/AIDS diagnosis in the UK was perceived to be equivalent to a death sentence and pushed many HIV-positive folks to isolation or rejection. As one survivor put it, “We prepared ourselves to die but the hardest part has been learning how to live.” For others, keeping their diagnosis secret led them to retreat back into the closet.

According to the NHST website, the film will try to answer the questions, “How did this community pull together and change people’s lives forever when faced with such negativity and stigma? How did we react when it became clear HIV had spread outside the gay community affecting heterosexual men and women, even children? What is it like now, after thirty years, to break that silence and to ask to be loved again? And what is it like to face the future living with HIV now?” It will also commemorate how the community came together to care for so many people in the midst of so much sickness and death.

Paul Coleman (left) with interviewee. Photo by Julian Ingle

Asked what criteria he and his team used to select the interviewees to film. Paul replied, “We didn’t really impose any criteria other than someone must have a passion to tell their story about HIV/AIDS.” He emphasized to A&U, “If people had a story to tell—whatever it was, positive or negative—it had a place in the archive and our filming. For many of these people this was the first time in perhaps twenty-five years they had spoken openly about their experiences and they were generally bubbling over with strong and moving recall.” As the stories are deeply personal and sometimes disturbing or painful, the interviews were often a very emotional experience for the crew filming as well as the interviewees. “We are looking to find the positive in the past as well as reflect on the darker realities [as well as] the amazing people who were part of a community who fought for our survival.”

To round up potential interviewees, the project team relied on word-of-mouth, giving various HIV service groups information about the project to share with their clients. They also approached some people directly, including Rupert Whitaker, Sir Nick Partridge, Tony Whitehead, and actor Rupert Everett. Because “we all have day jobs,” Paul said, “it took about two and a half years to get to the 100 and then we had a break of around eight months while the company we had in place was re-structured to allow for the expansion of the project and completion of the film.” The film is currently in post-production, with Nick Thorogood as Executive Producer and Paul producing and directing. Post-production should take about four months, and then begins the search for a distributor. “Containing tragic and sometimes grim stories of living and dying with HIV/AIDS, the film also celebrates those extraordinary acts of compassion, love and immeasurable strength shown by so many very special people from every walk of life,” their website promises. The goal is to have the film distributed far and wide in time for World AIDS Day 2019.

The NHST has utilized other means of telling and preserving the story of AIDS in the UK in the 1980s. On World AIDS Day 2017, they mounted an exhibit of photos at London’s City Hall. For the show, “EXHIBITION: SURVIVORS!,” curated by Paul and Adam Roberts, the team gave commissions to celebrated artist Danielle van Zadelhoff to create portraits of long-term HIV survivors. Her pictures show some of the people who have given in-depth interviews for the project. The exhibition drew the attention of London’s Mayor Sadiq Khan. “This important exhibition highlights the journey of those living with HIV and the journey the UK has been on as a whole….It’s vital that their stories are told and acknowledged as we redouble our efforts to ensure that HIV and AIDS are, one day, a thing of the past.”

In October 2018, as part of their education series, NHST and the Bloomsbury Festival presented a new play by Bren Gosling. Moment of Grace is based upon the stories of people who were present in the AIDS Unit at London’s Middlesex Hospital on the day thirty-two years ago, in April 1987, that Princess Diana of Wales visited several AIDS patients. Her generous act of shaking the hands of the patients, hugging them, with no gloves or other recommended-at-the-time “protection” was reported worldwide and a seminal turning-point in the public’s understanding of HIV. Gosling’s play explores stories of great courage and compassion from behind the scenes on that day.

Paul told A&U that he and the team at NHST are currently busy, not only editing the film but planning fundraisers to cover the huge expenses of such a large undertaking. For instance, the music commissioned for the film will be performed in a stand-alone concert by London’s world-acclaimed contemporary music ensemble the London Sinfonietta, known since 1968 for its innovative programming. When discussing the other upcoming events that are in the planning, Paul seemed to be torn (understandably) between exuberance and coyness, nearly bursting to say things he knows he shouldn’t say! “We are in the process of securing venues in which we will mount various events to fund-raise including musical artists who made their names in the eighties and nineties. We are also in talks to mount the next photography exhibition and develop a dance response. I can’t tell you who these individuals are until they have signed but there will be names you would probably recognize!”

Paul finished, “There is so much enthusiasm for the project we hope that people will be able to support us!”

For more information about the projects of the National HIV Story Trust in the UK, check out their website: It’s easy to make a secure donation through their website via the Donate buttons. If you prefer to write a check you can contact NHST at [email protected]. On Twitter follow them @hivstorytrust.

For a series of interview clips that show greater depth of diversity (20 minutes) go to:

Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.