World AIDS Day: Oral History and the HIV/AIDS Epidemic in Britain

World AIDS day

‘I suppose for me it’s quite interesting that people think of it as history ‘cause it’s, it doesn’t seem that long ago for me at all. But it’s over thirty years ago, so it is…’.

This is how the Manchester-based HIV activist Paul Fairweather responded when I asked him how it had been to sit down and reflect on his memories of the epidemic as part of an oral history project. He was not alone in this response. Many people, whether interviewees, fellow historians or passing acquaintances were taken aback that a study of the HIV/AIDS epidemic ‘counted’ as history. ‘I lived through that; that’s not history’ is a refrain I heard more than once, and with which oral historians will be intimately familiar. 

Yet oral history has never been far away from the study of HIV/AIDS in Britain. In 1988, just three years after a test for the human immunodeficiency virus had been developed, Virginia Berridge and Philip Strong began work on the AIDS Social History Programme. Based at the London School of Hygiene and Tropical Medicine (LSHTM) and funded by the Nuffield Trust, the Programme set out to record the experiences of an epidemic as its mortal progress throughout the UK was becoming increasingly visible to the general public. Recognising that such an approach was both unusual and in need of staunch defence, Berridge declared that this was ‘contemporary history with a vengeance’.

Why was oral history so important for contemporary historians researching HIV/AIDS in the 1980s? For Berridge, oral history was a fundamental (in fact, a necessary) aspect of her research because ‘official’ sources were lacking. Government documents revealing the machinations of policy formation were out of reach, kept secret under the thirty-year rule. 

These documents are, for the most part, now accessible to historians researching HIV/AIDS, and yet oral histories of the epidemic abound. The British Library’s impressive collection of interviews began with Wendy Rickard’s ‘HIV/AIDS Testimonies’ in the 1990s. These remarkable interviews provide unique accounts of the way memories of living with HIV/AIDS were constructed before and after the introduction of highly active antiretroviral therapy (HAART) in 1996. Since then, the BL has added a collection of interviews with HIV healthcare workers, and today celebrates the launch of the CHIVA oral history project ‘Positively Spoken’. This new oral history project is led by young adults living with HIV and will run for two years. Sam Williams, the project’s Communications and Engagement Manager, explains: 

The project will provide a safe space for other people born with HIV to be professionally interviewed, so that they can have their insightful and important stories recorded and included in the social history of HIV in the UK, for future generations to learn about. 

It’s not just the British Library which hosts collections of oral histories of HIV/AIDS. The largest video collection of HIV/AIDS interviews, the National HIV Story Trust, is housed at the London Metropolitan Archives. The Lothian Health Services Archives boasts many interviews with prominent Scottish policy makers and healthcare workers. The archives of LSHTM host the interviews which Berridge and Strong conducted during their contemporary historical research. Meanwhile, graduate students and National Lottery Heritage Fund projects continue to produce oral history interviews, adding to the sources which will inform histories of the epidemic for decades to come. 

Why is this the case? What do oral history interviews have to offer historians of HIV in the UK which continue to make them so central to our methodology? 

For many people, the opportunity to convey their lived experiences of HIV/AIDS to younger generations is key. ‘I think it’s quite useful for younger people, especially younger people living with HIV, to hear about the experience of what it was like in the 80s and 90s’, explained Paul Fairweather. This was his motivation not only for talking to me, but for engaging in a number of outreach programmes in schools across Manchester. For interviewees and interviewers alike, the opportunity to engage in historical conversations across generations motivates the oral history process. As I have written about in Oral History, this is often particularly palpable (and in need of unpicking) in intergenerational queer interviews, and the presence of HIV/AIDS adds to the urgency of this dialogue. 

Perhaps most importantly for me, oral history interviews allow marginal voices to come to the centre of historical attention. In Britain, the virus was long considered a mainstay of gay men and intravenous drug users. As such, it took several years before ‘official’ documents began to question the impact of the virus on, for example, women. My own oral history interviews revealed the shocking impact this had on women’s experience of diagnosis: as medics went without training for the ways in which HIV presented in female patients, many women were diagnosed late or treated with contempt by medical practitioners, experiences which added to the trauma of being diagnosed with HIV before HAART was available. Oral history interviews allow us to capture and acknowledge these experiences, resulting in a more diverse coalition of people living with HIV seeing themselves represented in the archives and the histories we write. 

Increasingly diverse oral collections represent the ways in which people often overlooked by historians of HIV (people of colour, women, trans people, to name just a few) are using oral history for its original radical purpose: to disrupt historical narratives and amplify forgotten voices throughout the archives. The growth and diversity of these sources, and the extent to which they emerge from grassroots efforts, is a real cause for hope. 

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