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research

Insights from stories of pandemic life, the history of

self-advocacy and working in academia

Juliet Diener reviews studies on how telling stories helps people were answered by early leaders of
make sense of life in the time of Covid, self-advocacy’s dynamic self-advocacy, allies and supporters.
With no funding and pandemic
history and employing a researcher with a learning disability restrictions, the authors found technology
was a welcome support as interviews
were conducted mostly online.
Telling their pandemic stories stories offered insights, a means of While attempts were made to interview
Bartlett T, Charlesworth P, Choksi A, connecting, opportunities to be heard and most of the leading advocates of the time,
Christian P, Gentry S, Green V, Grove N, a creative release while navigating the it posed problems. Nonetheless, those
Hart C, Kwiatkowska G, Ledger S, Murphy endless difficulties of the pandemic. involved offered a vast range of
S, Tilley L, Tokley K. Surviving through Various themes emerged such as grief, as experiences and reflections.
story: experiences of people with learning shared by Susie Gentry (page 10). Following the interviews, a timeline was
disabilities in the covid19 pandemic She explains her reason for sharing her drawn alongside various themes from the
2020–2021. British Journal of Learning story after losing her long-term partner: transcripts. The timeline is significant,
Disabilities. 2022;50(2):270-286.  “I wanted to help other people. I wanted giving context to and illustrating the
https://doi.org/10.1111/bld.12463 to tell them what had helped me. Because development of the actions of self-
I had lost Ron, I knew how they were advocacy, and offering insights from both
dentifying the importance of allowing feeling and how hard it can be.” individual and group advocacy that
people with learning disabilities to Ajay Choksi shared his experiences of “preceded the founding of collective
Ishare their stories and to have these having the vaccine: “I got my vaccination in self-advocacy in England”.
stories documented as part of mainstream March, the Oxford one. Next day, my arm Self-advocate Wendy Perez stresses: “I
history led to the Surviving through was hurting, when I was trying to use my have always spoken up for myself – even
Story project. arm, it was hurting, it was a little bit when younger, I made my own decisions. I
Supported by the Open University’s painful. But no headache or anything. Now just did it. My family encouraged me… You
Social History of Learning Disability I have both of my jabs. Yes!” shouldn’t need an organisation to speak
Research Group, the Generate charity and The narratives helped the authors to up. It shouldn’t be that way.”
the Three Ways School in Bath, groups make sense of their experiences and The early gatherings of self-advocates
and various advisory members came created an opportunity for their histories were deemed as participatory with the
together to create an interactive, online to be recorded. emphasis being on “mutual learning and
resource to allow people with disabilities This research is filled with rich stories, understanding”. In the 1980s, this shifted,
to share their stories through the clear visuals and an engaging website that with gatherings becoming more about
Covid-19 pandemic. now offers an archive of experiences of promoting independence and rights.
Offering storytelling as a means to bring people with learning disabilities during Walmsley, Davies and Garratt give a
about social change, the researchers the pandemic. This allows their voices to fascinating account of how various events
provided a forum that was safe, accessible be heard loud and clear and their and policy decisions led to the ever-
and purposeful. contribution to be considered as decisions evolving history of self-advocacy.
It made sure the disabled person’s voice are made and policies written. They leave the reader with a thirst for
was heard as they experienced the more as this research paper is merely “a
changes, loss and uncertainty that the History of self-advocacy first step in recording the stories of early
pandemic evoked, as well as exploring Walmsley J, Davies I, Garratt D. 50 Years of leaders of self-advocacy and recognising
new ways of being in the world. speaking up in England – towards an their contributions”. They name the
For storytelling to be successful, the important history. British Journal of difficulties and misses alongside the
website “needed to be a space accessible Learning Disabilities. 2022:50(2):208-219. achievements and successes, prompting
to and directed by people with learning https://doi.org/10.1111/bld.12453 a call to action.
disabilities themselves, allowing content As self-advocate Danielle Garratt
to grow organically in response to the elebrating 50 years of self-advocacy, concludes: “If we don’t record these
contributions received, the evolving which prompted change for and by stories, they will be lost forever and
pandemic situation and new ideas”. Cpeople with learning disabilities, this people will never know how our
The website (https://www. research project was set up to capture the movement started.”
survivingthroughstory.com) offered a histories of this significant movement. As
sensory experience of sharing personal people with learning disabilities are Recruiting a researcher
histories through a variety of accessible under-represented within scholarly and Anderson RJ, Keagan-Bull R, Giles J,
means to meet a range of needs. historical writings, the authors worked to Tuffrey-Wijne I. “My name on the door by
What the storytellers shared about the make sure this history was recorded. the professor’s name”: the process of
pandemic was profound, highlighting With authors donning masks and recruiting a researcher with a learning
sadness, loneliness, fear and despair. meeting between lockdowns, the research disability at a UK university. 2022. https://
However, there was also hope as the was generated through 10 questions that doi.org/10.1111/bld.12477

22 Vol 35 No 4 | Summer 2022 Community Living www.cl-initiatives.co.uk