Stories of survival and loss: British Library archives Haemophilia and HIV Life Histories

20 November 2007

The unheard voices of the people with bleeding disorders infected with HIV through their treatment, and the often silenced stories of the parents, partners, children, brothers and sisters who played a vital role through all the challenging years, have been recorded as part of two oral history projects Haemophilia and HIV Life History Project and HIV in the Family. The material will be presented to the British Library at a reception on Tuesday 20th November 2007.

Extracts of these incredible stories of survival and loss can be heard on www.livingstories.org.uk and the complete interviews through the British Library Listening and Viewing Service in London.

In the early 1980s 1,200 people with bleeding disorders were infected with HIV through contaminated blood products, of whom over 800 have now died. Thirty people with bleeding disorders and HIV and thirty-six relatives of haemophiliacs who contracted HIV told their stories, which explore how haemophilia and HIV has affected both family and individual lives:

• Twenty-nine haemophiliacs with HIV were interviewed, one of whom has sadly now died.
• One woman with von Willebrand's disease and HIV was interviewed.
• Seventeen parents were interviewed; eleven of whose child or children have died.
• Eleven wives and partners shared their stories; for four of them their partners are alive, for seven their husbands and partners have died.
• A daughter talks about her father who died and whose mother is infected.
• Five sisters, whose brothers have all died, tell their stories. A nephew tells of his feelings and emotions about his two uncles, one who has died and one who is alive today, and one man, himself infected with HIV, relates his feelings about his nephew who died.

Rob Perks, Curator of Oral History at the British Library, commented, "This is a brave and exceptional oral project, recording rare insights into shifting medical care practices, changing public attitudes and personal coping strategies. The interviews are an important addition to the Library's growing health collections."

The Rt Hon The Lord Morris of Manchester, President of the Haemophilia Society said: " I pay warm tribute today to the Haemophilia and HIV Life History Research Team for the humanity of their concern and hugely successful outcome of their endeavours."

Chris James, Chief Executive of the Haemophilia Society said: "No-one can read or listen to these accounts without being overwhelmed by the extent of this disaster of the courage of those who have survived it."

There are two collections of life stories, the initial 'Haemophilia and HIV Life History Project' which collected 30 life histories from people with bleeding disorders infected with HIV through their treatment was completed in 2005. It became clear that behind all the stories told by those with haemophilia and HIV there were so many more, often silenced, stories. The 'HIV in the Family' oral history project which finished this year, gave a voice to those family members who witnessed their partners, their children and their fathers face the challenges of living, and dying, with HIV infection.

These two collections of life stories provide a rich resource of the experience of haemophilia and HIV in the UK in the words of the people that have lived with the condition and add a significant dimension to the existing histories, ensuring a much wider perspective is available for future generations.

The project was funded by The Heritage Lottery Fund and the University of Brighton and supported by the British Library, The Haemophilia Society and the Macfarlane Trust.

Contributors to the project are available for interview or short audio extracts are available on request. Please contact Dan Farthing at the Haemophilia Society on +44 (0)20 7269 0688 or email dan@haemophilia.org.uk

For further information please call Catriona Finlayson on +44 (0)207 412 7115 or email catriona.finlayson@bl.uk

Notes to Editors

The Living Stories Website

The Living Stories website www.livingstories.org.uk is an interactive resource that was created on completion of the 'Haemophilia and HIV Life History Project.' The website offers a glimpse of some of the life histories, and edited audio extracts with photographs, which illustrate and illuminate the individual stories and themes. There are links to other haemophilia websites and other HIV websites and fact sheets to give further background information.

National Life Stories was established in 1987 to 'record first-hand experiences of as wide a cross-section of present day society as possible'. As an independent charitable trust within the Oral History Section of the British Library Sound Archive, NLS's key focus and expertise has been oral history fieldwork. Over the past two decades it has initiated a series of innovative interviewing programmes funded almost entirely from sponsorship, charitable and individual donations and voluntary effort. For more information visit their pages via the British Library Sound Archive.

The British Library Sound Archive holds over a million discs, 200,000 tapes, and many other sound and video recordings. The collections come from all over the world and cover the entire range of recorded sound from music, drama and literature, to oral history and wildlife sounds. For more information visit the British Library Sound Archive.

Both life history projects were based at the Institute of Nursing and Midwifery at Brighton University.

The Heritage Lottery Fund funded both the Haemophilia and HIV Life History Project and HIV in the Family. HLF was founded in 1994 to use money generated by the National Lottery to give grants to a wide range of projects involving the local, regional and national heritage of the United Kingdom.