Weathering the Storm

Weathering the Storm: experiences of disability during the Covid-19 Pandemic

pair for LD project
pair LD project

Deaths from Covid had risen to 200,000 in the UK by autumn 2023 (The impact of the pandemic on population health and health inequalities (bma.org.uk), with an unknown number of survivors suffering from its long-term effects. People with a learning disability have been particularly hard hit by the pandemic.

A 2021 study reported that people with a learning disability had markedly higher hospitalisation and death rates from Covid compared with the general population. Those classified as having severe to profound learning disability and those staying in residential care were particularly badly hit. This is partly because people with a learning disability often suffer from a number of other health conditions, such as diabetes, which makes them vulnerable to severe illness. The cause of those with learning disability was successfully taken up by the likes of the Mencap organisation and Radio 2 DJ Jo Whiley in respect of prioritising vaccination.

Against this background, the University of Hertfordshire oral history team, supported by Hertfordshire County Council, embarked on a project to hear the voices of people with a learning disability. The project also sought out testimony from those who care for them and who commission services to benefit them. Here are collections of highlights of the material gathered:

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Content warning: Please note that these oral histories contain discussion of the Covid-19 pandemic, and the difficulties faced by many people during this time. They may contain upsetting or difficult memories.

The project

This small study was not intended to produce research findings — rather, to hear the stories of those confronting the pandemic. We were interested in people’s experience of lockdown in such areas as understanding government communications; being ill and isolating; the separation from friends and family and from their normal activities.

The interviews were conducted largely in the second half of 2021 by University of Hertfordshire nursing students specialising in learning disability care, backed up by community members of the University oral history team. All received training for the exercise from senior research fellow, Andrew Green. Nominations for interview came from Hertfordshire County Council’s ‘Experts by Experience’, the Purple All Stars (a health communication group) and Herts People First (a self-advocacy group). Potential study participants were sent details of the project and a consent form in (where appropriate) an Easy Read format. Consent was obtained both in writing and also verbally at the beginning of interviews.

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pair ld project

All interviews were conducted on Zoom with the aim of posting audio recordings on this website. A particular project challenge was to identify people with a learning disability who had access to a suitable computer, who could manage the technology, and who were able to communicate their thoughts and feelings at distance via a medium such as Zoom.

A particular concern in conducting interviews of this kind was whether talking about the illness and death of loved ones, and of social isolation and mental health issues, would cause undue distress. In practice, interviewees showed remarkable resilience in coping with the interview questions.

The project interviews offer vivid insights into the thoughts and feelings of those in a sector of the population whose voices are rarely heard. Some of this testimony is emotionally powerful. It is at times sad, funny…or expressive of acute frustration. Among other things, there are accounts of the experience of trying to follow government policy; of dealing with Test and Trace; of being ill with Covid; of coping with the lack of normal contact with people…and of the occasional pandemic benefit.

There are also prompts for organisational lessons to be learned which may be useful in confronting similar emergencies in the future, not least from the testimony here of those who commission services, advocating for the learning disabled, and those who enter homes and hospitals to support their clients.

Researchers may find the unvarnished testimonies posted here useful in building a picture of life under Covid through stories that illustrate how a section of the community both coped with the waves of virus prevalence and navigated government regulation in response to the crisis.

Finally, a big thank you to all staff involved at the University of Hertfordshire and to all the project participants — both interviewers and interviewees — who gave up their time to gather and share their views and feelings.

1 BMJ 2021;374:n1592. http://dx.doi.org/10.1136/bmj.n1592

2https://www.theguardian.com/world/2021/feb/24/people-with-learning-disabilities-should-be-prioritised-for-covid-vaccines-says-jcvi?LinkSource=PassleApp

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man 4 LD project
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lady ld project

The interviewers were…

Daniel Currell, Nula Glasheen, Rukhsana Jahangir, Kirsten Lamb, Rachel Morfett, Chika Nnadozie, Betsy Okai, Peter Reilly, Gareth Roberts.