This Disability History Month, staff from across the British Library have collaborated on a series of blog posts to highlight stories of disability and disabled people in the Library’s collections. Each week a curator will showcase an item from the collections and present it alongside commentary from a member of the British Library’s staff Disability Support Network. These selections are a snapshot insight into the Library’s holdings of disability stories, and we invite readers to use these as a starting point to explore the collections further and share your findings with us.
This selection has been made by Dr Madeline White, Oral History Curator.
Photo by K. Mitch Hodge on Unsplash
The theme of UK Disability History Month (UKDHM) 2022 is Disability, Health and Well Being. The theme was chosen to shed light on the societal barriers that compromise the health and wellbeing of disabled people. In particular, it seeks to highlight the ways in which the Covid-19 pandemic exacerbated many of these inequalities.
The UKDHM website draws together some of the research into the impact of the pandemic on disabled people and communities. Reports and statistical analyses reveal above average rates of preventable death, exacerbated mental health issues, and increased isolation and poverty among disabled people. This excessive suffering was not inevitable, but the result of structural inequality, discrimination, poor communication and government action.
The oral history collections at the British Library offer us an opportunity to explore beyond the statistics and hear people’s lived experiences and emotions. We can use oral history, for example, to listen to disabled people describe their experiences of living through the pandemic, in their own words. In doing so, we can begin to get a sense of the human impacts of policy decisions and ableist attitudes.
The Voices of Our National Health Service collection – now archived at the British Library – comprises thousands of interviews recorded by the University of Manchester between 2017 and 2022. Given its sheer scale and scope, the collection offers an unparalleled insight into healthcare provision in the UK as experienced by patients, staff and communities across the country – including during the Covid-19 pandemic.
Within this collection are hundreds of stories that speak to the UKDHM theme of ‘Disability, Health and Wellbeing’. Individuals with pre-existing health conditions or disabilities designated ‘Extremely Clinically Vulnerable’ by the government describe their experiences of shielding during lockdowns. In other recordings, patients experiencing long Covid symptoms describe the lasting impact of their new illness on their day to day lives. Throughout, these interviewees explore how their health needs were at times met and at others missed by government public health policy, by the medical profession, and by the communities they live in.
Photo courtesy of Stephen Lightbown. Image not licensed for reuse.
Stephen Lightbown is one such interviewee. Stephen was a Director of Communications in the NHS until March 2020, when he took early retirement on health grounds. In his interview, Stephen reflects on life as a wheelchair user before and during the pandemic, exploring the extent to which society has adapted – or failed to adapt – to meet his needs and the needs of other disabled people over time.
In this first clip, Stephen recalls some of the discrimination he encounters in his daily life as a wheelchair user and some of the ways in which the pandemic exposed the ableist attitudes that are prevalent in UK society.
Stephen Lightbown on ableist attitudes of society being laid bare during the pandemic [BL REF C1887/700]
Download Stephen Lightbown on ableist attitudes - transcript
In addition to recording personal experiences at various intersections of disability and healthcare, the Voices of Our National Health Service collection offers an insight into individual wellbeing in the context of a global health crisis and beyond. Within the collection, people with disabilities describe how the pandemic and the measures to combat it impacted on their wellbeing. In this next clip, Stephen offers an illuminating perspective on access to social events. He argues that the swift move to online events during lockdown undermines the oft-made argument that providing regular access for disabled people to events and spaces is often too expensive or too difficult.
Stephen Lightbown on accessing events online during the pandemic [BL REF C1800/700]
Download Stephen Lightbown on accessing events - transcript
The nature of oral history as a methodology means the material it produces often offers unmatched insight into events as experienced by individuals, many of whom would not otherwise record their stories or be represented in the historical record. The Voices of Our National Health Service collection in particular has preserved for posterity raw and honest accounts of the pandemic from those who experienced it at its most extreme, of whom disabled people represent a significant demographic.
As the British Library and other archives continue to collect oral history material in the future, we will capture more stories from disabled people about their lives, including experiences of the pandemic. The legacy of the pandemic and its lasting impact on the rights of disabled people remain to be seen, but these archives will provide a vital source of information long into the future.
Reflection from British Library staff Disability and Carer Support Network member Barbara O'Connor:
Stephen’s words echo mine and those of many who are struggling to understand what is happening to our rickety constructs, created by us so we can fit in and function. I saw lockdown-levelling-up, this pandemic by-product, as a boon. On 23 March 2020 my life became normalised: everyone was housebound, working remotely, socialising and culture-consuming on-line. Puff! Gone overnight the anxiety and exhaustion of the daily foray into hostile territory. In Stephen’s words, it was 'liberating.' Come-wheel-with-me, my able-bodied friends, I’ll show you how this works - I’ve got form! I felt guilty about these thoughts, worried that I would be seen as gleeful. I too was optimistic that we would emerge with a fresh vision of new ways of being, of delivering, of including. On 21 November 2022 my life remains, de facto, in lockdown. The gap between our worlds has not lessened, nor an interest in closing this gap increased. Many appear unaware or unwilling to recognise that their privilege to choose remains in intact whilst mine remains arbitrary. This is as crushing as anything done to my body by the virus. As Stephen, my benign doppelganger says, 'it feels like we are dispensable' and 'it is heart breaking.'
Find out more:
The interviews in the Voices of Our National Health Service collection are now available for listening on site at the British Library and a large number will be available online via British Library Sounds from 2023. You can search for the collection using reference number C1887 in the Sound and Moving Image Catalogue.
You can listen to more extracts from interviews in the Voices of Our National Health Service collection and explore material from the British Library’s other Covid-19 collections on the web resource Covid stories.
For more information on the wide range of disability oral history collections at the British Library, consult our oral histories of disability and personal and mental health collection guide.