The National HIV Story Trust

The National HIV Story Trust is about filming, recording and preserving the history of those affected by the AIDS epidemic of the 1980s and 90s. Central to that story has been the LGBTQ+ community but this Project is wholly diverse, reflecting the experiences of men, women, trans, gay and straight, of all races, UK born and migrant. It also reflects the experiences of those infected through blood transfusion and drug addiction.

The stories of those involved are already in danger of being forgotten, yet the epidemic is the most significant event in modern day LGBTQ+ life and continues to affect the community and its history today. It changed the way that people were cared for and died and also importantly it changed the way we live now. AIDS probably advanced gay rights more than anything else in history and many of the freedoms the LGBTQ+ community enjoy today are due to the changes the AIDS pandemic instigated.

The Project charts not only a key and tragic part of LGBTQ+ history, but of our society’s shared history. The HIV crisis cut into every kind of life, and the aftershocks reverberate on to this day.

That’s why we have already filmed 100 in-depth interviews to create the largest filmed archive of HIV related testimony in the UK. That amounts to over 150 hours of material and we plan to collect many more stories from people affected by HIV/AIDS over time. By achieving all this we continue to advance our social history.

While we create a feature film and other productions from the interviews, we also want to preserve them in their entirety for future generations. That’s why we have teamed up with the London Metropolitan Archive, the largest County office in the UK to preserve the materials in perpetuity, and eventually make them available for researchers, historians and the public.

The ultimate aim of the project will be a legacy of support for HIV/AIDS charities.

Click here to see a flavour of the film.

a feature film

secrets & silence

The feature film will reveal the heart of the HIV/AIDS story, telling in people’s own words, what it was like to live through the loss of so many friends and lovers, but also what was done to ease the pain of so much sickness and death in the UK.

In the 1980s an AIDS diagnosis was thought be ‘a death sentence’ by many. So stigmatised was a positive diagnosis that for many it led to isolation or rejection and in some cases suicide. For many others the ‘secret’ of their positive status led to a silence of their lives and needs over decades, and a retreat ‘back to the closet’.

What must it have been like at a time when you would hope the arms of love would surround you, yet were unable to even reach out to touch?

Thank goodness then for those that would not be silenced and those who did care passionately about people living with AIDS: the carers, the lovers, the clinicians, the activists and visionaries, the fundraisers and the friends. 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 30 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?

Our film is about understanding and revealing the silence and secrets of the time and learning how a community stood together and built a better future, even while it was being drained of life.

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.

Help us complete a feature length film documentary featuring stories from our 100 interviews

Click here to see excerpts from some of the interviews.

a public archive

The interviews in full are to be made public, a vast archive of witness testimony: from men, women, friends, lovers, clinicians and activists as well as long term survivors themselves. This will be the largest collection by far of its kind in the UK. The interviews will be archived in their entirety, openly and freely accessible to the public.

We are delighted to collaborate with the City of London’s London Metropolitan Archives (LMA).

On 20^th March 2019 at the City of London’s Guildhall we deposited with the LMA the one hundred interviews, amounting to more than 150 hours of filmed material.

“Our stories will now live for 1000 years!”

The archival process is now under way but to make them freely available to the public a legal process must be undertaken first to ensure the interviewees testimony is legally compliant for the safety of all identities.

The London Metropolitan Archives hold a huge and diverse collection of archives, images, records, maps and films which help researchers in all aspects of London’s history to develop their knowledge.

LMA’s collections are designated as being of national and international importance

The LMA is the principal local government repository for the Greater London area and the largest county record office in the UK.

GRAHAM PACKHAM, chairman of the City of London Corporation’s Culture, Heritage and Libraries Committee has said of the collection of interviews:

“These deeply personal stories will inform, inspire and influence, providing a powerful and empowering discourse. It is very important work, and London Metropolitan Archive’s involvement will ensure that these voices are preserved for the future and can be shared for the benefit of many others.”

The 100 interviews chart not only a key and tragic part of LGBTQ+ history, but of our society’s shared history. The HIV crisis cut into every kind of life, and the aftershocks reverberate on to this day.

We need to raise funds in order to employ lawyers to make sure the interviews are compliant and help with the archive process. Help us complete the largest filmed archive of HIV testimony in the UK and make it accessible to the public now by making a donation or if you are a media lawyer who could offer some pro-bono help please email us with your details.

Click here to see more about the London Metropolitan Archives.

education

The project will seek to develop educational resources for schools and colleges, through the use of the archive and film, so that younger generations can connect directly with this important part of social history, leading to further understanding and knowledge. The Project is driven by concern for the next generation, a generation fighting its own important and evolving battle with the virus. It is about connecting young and old, about passing on the lessons of experience.

It is presently not uncommon for students to leave their education having been told nothing about the history of HIV/AIDS, let alone sexual health around the virus and the implications of being diagnosed HIV positive. We want to start bringing about some mainstream awareness by educating people through our resources.

To do this we need to develop this website as a fully interactive tool, where the public can not only search for historical detail by accessing parts of the 100 interviews but also add to it by uploading their own stories.

Help us develop an educational resource by creating a fully interactive website for the project where people can research and connect with the history of HIV/AIDS

hiv in later life

The project is not just about those who did not survive. We place centre stage the survivors still here who are facing later life, people who did not expect to survive and did not make provisions for old age.

This is about the first generation of people living with HIV and who are faced with many challenges.

The support structure that was so hard fought for in the past is now being withdrawn or depleted and those places of support and integration, the drop-in centres are all but a thing of the past. Isolation for many older positive people is not uncommon.

Living through those times and surviving HIV has left many survivors with complex psychological difficulties, not yet properly addressed or understood. And while combination therapies keep many alive, the daily grind of survival can be tough, mentally, physically and economically.

As one survivor has put it: “we prepared ourselves to die but the hardest part has been learning how to live.”

With this in mind the aims of the project are to create a broad and eclectic archive and social history resource that will ensure such a crucial time can never be forgotten. Ultimately, the project will be a legacy of support for HIV/AIDS charities.

Help us to develop awareness of people living longer with HIV and the challenges we face as a society to develop specialist care and resources for later life

the arts

We are keen to develop exhibitions, performance and music to raise public awareness of the Project and HIV in general.

We are presently exploring the opportunities of commissioning music for the film and that can be used for concert hall performance.

EXHIBITION: SURVIVORS!

As part of World AIDS Day 2017 we were invited to mount a photographic exhibition at London’s City Hall. We commissioned celebrated artist Danielle van Zadelhoff to create portraits of long-term survivors of HIV and her pictures show some of the people who have already given in-depth interviews.

The Mayor of London, Sadiq Khan said “This important exhibition highlights the journey of those living with HIV and the journey the UK has been on as a whole – from hard-hitting and powerful public information campaigns of the 80s to the huge progress made in treatment today. 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.”

The SURVIVORS exhibition was curated by Adam Roberts and Paul Coleman

THEATRE: MOMENT OF GRACE

In October 2018, Bren Gosling’s new play about HIV/AIDS ‘MOMENT OF GRACE’ was performed as part of the Bloomsbury Festival to huge success. The play is based on the actual experiences of people who were in the Middlesex hospital the day Diana, The Princess of Wales, shook the hand of a person with AIDS. Bren was able to use some of our interviewees stories as part of his research.

’Beautifully constructed and sensitively played. Congratulations! Do hope some theatre/producers show some interest.‘

’Well researched, will written, well performed and very moving and enlightening. A tour de force.’

’Mind-blowing and humbling; the time has come for a specifically British take on those years.’

In the 1980’s, AIDS was a new and terrifying disease. You saw it as a death sentence. If you had it, you were shunned by society, no-one would even touch you. Until… the Princess of Wales very publicly visited patients on Britain’s first AIDS Unit at London’s Middlesex Hospital. Diana shook their hands and wore no gloves, no ‘space suit’ protective clothing. This one gesture changed everything and was instrumental in shifting public and media attitudes. What was it like to be there on that day? Based on personal testimonies, Bren Gosling’s ground-breaking and intensely moving new play was inspired by Diana’s visit. It tells the stories of quiet personal courage and human dignity behind the main event.

meet the team

We are a group of volunteers who believe passionately in the preservation of our social history and in supporting people whose lives have been affected by HIV and AIDS. We are presently exploring the opportunities of commissioning music for the film and that can be used for concert hall performance.

Josh is Founder and Managing Director of Regency Creative – a boutique web design and branding agency in London. He has worked as a brand and digital media strategist for over 11 years. His passion has driven him to work alongside both small local start-ups and multi-national brands such as BP, Dyson and Dropbox.

As a keen advocate of CSR Josh is always seeking new ways to help raise awareness of equality issues through brand reputation and currently works closely with Stonewall, Metro and Heart of the City Westminster.

Julian Ingle brings the heritage and training of journalism and documentary film making. After 9 years with the BBC, latterly as Senior Producer for BBC Breakfast news, he was one of the early leaders of Al Jazeera English and was Executive Producer of its biggest budget, most renowned and global flagship news program. He’s lived in London, Doha, Washington DC and New York. Julian is an expert in successful content creation that is attractive and fit-for-purpose for documentary style story telling.

Jan Pimblett is the former Principal Development Officer at London Metropolitan Archives (LMA), with responsibility for LGBTQ+ community history projects. Jan has been working with LGBTQ+ communities and historical archives for nearly 20 years, helping to make LMA one of the main centres for LGBTQ+ history in the UK.

As a fellow of the Royal Society of Arts Jan is a member of the LGBTQ+ special interest forum. She continues to work with a number of organisations including Queer Britain, which is working on a proposed LGBTQ+ Museum.

Erica Pienaar has had a long career in education and was appointed a Dame for her services to education in the 2014 Queen’s birthday honours list.

Until her retirement in September 2013, she was Executive Head Teacher of the Leathersellers’ Federation of Schools. The Federation was established in September 2008 in Lewisham and comprises three schools: Prendergast-Hilly Fields College, Prendergast-Ladywell Fields College and Prendergast-Vale College. The federation is a “hard federation” led by a single governing body.

She began her career as a Science Teacher in 1973 and taught for 41 years in South East London. She was the Head Teacher of Prendergast School (Hilly Fields) from 1998 to 2008.

She continues to work with schools as a governor and she is also a Non Executive Director of Wey Education PLC.

Dan’s career has seen him focus on communications, particularly public relations and government relations at different agencies where he advised clients. Previous to his PR career he worked at the Policy Research Unit as a Parliamentary Researcher where he produced detailed briefing papers for MPs. He also volunteers for the ‘Freedom to Donate’ campaign as head of PR and sits as a representative on the NHSBT FAIR steering group (NHS Blood and Transplant For the Assessment of Individualised Risk) where he works with stakeholders such as the Dept of Health and Social Care.

Dan is excited to use his expertise in comms and political engagement for NHST, a unique project to secure the histories – negative and positive – of those affected by the AIDS epidemic of the 80s and 90s.

Vanessa is currently Events Co-ordinator for the Institute of Voluntary Action Research (IVAR) which helps organisations which are campaigning for social change. Prior to this she managed BBC community engagement campaigns, such as WW2 People’s War– an oral history project which became an online archive of World War Two experience,The Big Read to find the UK’s best loved books and Breathing Places to create more spaces for nature. Recently she coordinated Reading Oasis, a literacy campaign for the charity United Way UK which places library resources into primary schools.

Vanessa is offering both her event management skills and experience of working on oral history projects to help NHST continue to tell these invaluable stories.

supporters

Thanks also to:

Brett Lotriet Best for invaluable promotion advice. Bjorn Swinton-Berry for sound engineering and advice. Angela Byakwaga, Cristian Sandulescu & Chris Sandford at Bloomsbury Clinic at Mortimer Market Centre. Ian Green and his team at Terence Higgins Trust. Greg Ussher and Metro Charity. Keifer Taylor for camera work. Logo design Sebastien Michau & Gael Laporte. Web site designers and builders Dimitri Yiannakis & Kevin Watson and many others who have helped in so many ways to help this Project be realised.