Jumpcut together, Kevin and Theresa’s recorded testimonies are searing insights, firsthand accounts, and mere drops in the ocean. They lay bare the fear, discrimination, and misunderstanding that defined the early years of the HIV/AIDS epidemic following its identification in 1981, when a diagnosis was often a death sentence and the immunodeficiency virus stigmatised as a moral failing.
Though deeply personal, their stories are part of a far larger record preserved by the National HIV Story Trust (NSHT)- a charity dedicated to recording, safeguarding, and sharing the first-hand accounts of individuals affected by HIV and AIDS. The largest of its kind in the UK, The Trust has amassed an archive of more than 200 hours of recorded testimonies and now forms the backbone of the HIVstory Project, which has a simple mission: for people to remember.
The HIVstory Project is a three-year outreach initiative, set in motion in 2024 and funded by The National Lottery Heritage Fund, that brings these testimonies out of the vaults and into the hearts of communities across the UK. Launched on the 29th October, this exhibition kickstarts the North East project, realised in partnership with Newcastle University, where HIV/AIDS education will be activated across the region through exhibitions, workshops, and events. Here, 45 oral histories intersect with local voices and spaces, reigniting forgotten stories into a region shaped by the contaminated blood scandal, witness to grassroots activism such as Living Proof, and home to the second NHS Trust in the country to be awarded recognition for being HIV Confident.
The exhibition is grounded in the communities it seeks to engage. At One Strawberry Lane- a city-centre hub for organisation collaborations and weekly support groups, shadowed by St James Park- the hustle and bustle anchors the archival exhibition in the present. A curved wall is lined with accounts and faces behind the stories, framing a TV screen playing archived interviews on a continuous loop: Kevin, Theresa, survivors, activists, doctors, professors, and loved ones.
Dr Gareth Longstaff, North East Regional Lead of HIVstory and Faculty Director of Diversity, Inclusion and Equality at Newcastle University, says that this grassroots approach to the exhibition is ‘intrinsic’ and utilising mainstream spaces is a 'crucial driving force' behind reigniting the North East’s landscape’s voices. “I want the work we do in the North East with this project to become a non-London pilot for other geographies in the country," Gareth says. "You could lift and shift what we have done up here anywhere and it would have its own flavour.”
The most important thing is to tell the truth. If you tell a story that's true, you normalise it
Across the space hangs a vibrant, extensive AIDS quilt- a mosaic of textile panels with distinctive patchwork designs and messages stitched by people living with HIV who attend social groups at the Blue Sky Trust. The piece was created as part of the Eyes Open project, a North East and Cumbria-based collective who use art competitions, workshops, parades, campaigns, and various other community projects to raise awareness of HIV and contest its stigma. Made in 2012, the quilt stands a tactile altar to lives cut short and communities forever changed, and is inseparable from its driving force, Mark Ellerby-Hedley, Senior Health Improvement Practitioner at the Newcastle Upon Tyne Hospitals NHS Foundation Trust.
After suddenly losing his longtime partner to HIV in the summer of 1998, Mark was tested HIV-positive and dismissed from his job as a supermarket manager when his diagnosis was disclosed to his boss. Subsequently, he returned to education and completed a counselling course at Newcastle College before becoming a HIV Men’s Support Worker at MESMAC, and later, a founding member of Eyes Open in 2003. “The aim of Eyes Open was to engage with schools through their art departments, facilitate awareness sessions, and then encourage them to produce artwork to enter into an art competition,” Mark says. “Our winners and highly commended pieces were shown at an exhibition at the Biscuit Factory during World AIDS Day in 2003.”
After deciding to build an Eyes Open HIV Awareness Quilt as a resource to continue channelling education through creativity, Eyes Open delivered workshops throughout 2011 met with huge support. “We were overwhelmed by the number of quilt patches designed and made by both people living with HIV and those who came to our workshops to learn more,” Mark continues. “I am so proud to see the quilt displayed as part of the HIVstory exhibition. My hope is that the exhibition will continue raising awareness of HIV and give people an opportunity to hear lived experiences of how HIV impacts people's lives.”
Over 40 million people have passed away from HIV-related causes since the beginning of the pandemic, with around the same number living with the virus today; in 2023, the North East recorded 148 new HIV diagnoses, a 40% increase from 2022. Here, those statistics become tangible, with numbers and percentages brought to life through stories of love and loss. The exhibition circles a large communal space of tables and chairs, the space itself encouraging conversation in an extension of the dialogue piped up by the testimonies surrounding it. “The gay community was very successful at being an underground community as the HIV pandemic started, but when the community suddenly became headline news, we could not be ignored,” says Nick Thorogood, CEO and co-founder of NHST. “For a lot of people, this pandemic was a second coming out.”
Nick registered NHST as a charity in 2020, alongside chair and co-founder Paul Coleman, after recording 100 interviews. Both men are bound to the project by both personal loss and flair for communication: Paul, a BAFTA-nominated TV director and producer, is himself a long-term survivor of HIV, while Nick, a former daytime television executive, lost his partner to the crisis in the 1990s.
In 2019, before formalising the charity, they deposited 150 hours of material with the London Metropolitan Archives, making it publicly accessible. Since then, the Trust has continued to integrate these archives into public spaces- from London Bridge tube station to Fitzrovia Chapel- and in turn, transform ordinary spaces into acts of remembrance. “It’s important to put these exhibitions into mainstream spaces so that people can see them,” Nick says. “The most important thing is to share the truth. If you tell a story that’s true, you normalise it.”
Back in the exhibition, those truths continue to play on loop- decades after the worst of the epidemic, the silence surrounding it is being filled. Except, this time, not by statistics or headlines, but by the voices of the people who lived through it, reaching out their hands to those in our local community.
The HIVstory Project exhibition is displayed at One Strawberry Lane until December. Admission is free.