As, we have previously shared with you, Disability Rights UK (DRUK) & People’s Voice Media have been working in partnership to record people’s lived experience narratives and insights about the COVID-19 pandemic and lockdowns. We are now ready to share the results of this work with you.

The Stories

During the project, we had the privilege to hear from people about their first-hand experiences of the pandemic. Many of these stories are difficult to hear but it is important that we listen and learn from them. We’ve create a playlist of key extracts from the some of the stories shared, that includes:

• Keymn explaining why having an understanding of the value of lived and living experience is training that healthcare professionals must have.
• Miro exploring why society has to re-think and understand disability differently.
• Amanda telling us why COVID information was not fully accessible for Deaf people and what could have been done differently.
• Andy explaining to Isaac the reasons for involving people with lived and living experiences.
• Hameed discussing both the positive and negative aspects of the pandemic.
• Baroness Brinton talking about health and social care problems that were highlighted during the pandemic.

You can listen to this playlist here.

And to listen to all of the experiences gathered relating to the pandemic, head to this page on the Community Reporter website: https://communityreporter.net/covid-conversations

The PVM process starts with individuals narrating their experiences, facts and feelings. We did this by talking to 22 people as part of the joint work with DRUK, so that the lived experiences of Deaf and Disabled people could be input to the COVID Inquiry.

The storytelling process

Isaac – the person who led this work, describes how in one part of the process, the information given by individuals seemed overwhelming and it was difficult to decide what are the key points we should communicate to the inquiry. This was because everything felt important and relevant and because the task of determining key themes seemed a limiting process.  It felt as though every point people made was important and felt like we might be trivialising the topic if we tried to distil it to a few simple ‘key points’ or ‘recommendations’.

However, the Community Reporting curation process (part of which was done with the storytellers themselves) means that meaning emerges from the stories and we are able to work with the detail and the nuance of people’s individual experiences. This doesn’t happen by magic. We listen and highlight what we think is important. We might colour code, group ideas together or count how often topics are talked about. We also consider how frequently a contributor might return to talk about a lived experience, as an indication of how strongly they feel about the issue. This is a multifaceted approached that allows us to work with both the individual stories (and highlight individual people’s voices) but also stories as a set of data.

For the COVID Inquiry work, we used dialogue interview and open questions to allow people to give their lived and living experiences using in their own words. As the work progressed, and by the time we had recorded 10 narratives, we started to ask people’s perspectives on topics that emerged in the other stories. There was definitely the need to balance the open questions against more focussed ones, because we did not want to lead the participants down a specific route, but we were aware that being able to give the COVID Inquiry team specific details would be important.

The findings

In the report we’ve included direct quotations from many of the people who shared their lived experiences. Where necessary, we’ve also offered explanations, based on the conversations and online sense making workshops we held. This is because we wanted to be clear about why particular aspects were different or difficult for Deaf and Disabled people. The key points from the report are:

• There was confusing and frightening information from national government and local authorities to Deaf and Disabled people.
• COVID both highlighted and exacerbated existing systemic problems and Inequalities (including racism, ageism and ableism) within statutory services
• Even though there is legislation, little understanding exists about Deaf and Disabled people’s needs.

The report is comprehensive and has had an emotional impact on some readers. We hope it will give people’s voices meaning so that the COVID Inquiry can make recommendations that will support Deaf and Disabled people, together with their carers. As Keymn Whervin stated in the foreword to the report: “The Inquiry must ensure that people affected by COVID have their voices heard, particularly in respect of how we co-produce health and social care”.