Page 24 - Community Living Magazine 34-1

coronavirus
Personal stories must be heard

During the Covid-19 crisis, people with learning disabilities are
being shown in the media as victims and do not get to tell their
own stories. Nicola Grove reports on a group changing this

eople with learning disabilities are learn from them about how to build
among the most at-risk groups for resilience? Here are a few examples.
Pcontracting Covid-19 and experiencing Young people with learning disabilities,
the knock-on effects of lockdown. supported by the charity Generate UK,
Charities and disability organisations are have been working on food box deliveries
raising the alarm that many people with to support the community. Robin Meader,
learning disabilities are not faring well in artist and member of Openstorytellers, a
the crisis, as our social order consistently Somerset-based storytelling performance
fails our most vulnerable citizens. The group, carried on sturdily at his local
impression given in the media is supermarket, and was named a frontline
overwhelmingly one of people with Sainsbury’s hero.
learning disabilities as passive victims. Some families say that, while some doors
were closing, others were opening. Louisa
Smith* started enjoying long bike rides and
It is vital we recognise exploring changes to her artwork. Nem Listen up: storytelling imparts information on
people’s achievements and Brown* from L’Arche Manchester reports people’s lives that you can’t find in other ways
members have embraced Zoom, learning
contributions, rather than skills, maintaining friendships and social It is vital we recognise people’s
allowing these to disappear contacts, and having signed conversations. achievements, experiences and
One message is that people with learning contributions, rather than allowing these
into the mists of time disabilities are like everyone else. Another to disappear into the mists of time.
is about compassion, thoughtfulness and As Pat Charlesworth of the Foundation
kindness. Take Sharon Green*, writing for People with Learning Disabilities puts
We put people in media silos, where about the unexpected death of her it: “There are ways of finding out things
only some are ever credited as narrators. husband and reaching out to others: through storytelling you can’t find in other
Even on sites targeting the learning ways. This website can go on when Covid
disability sector, stories are surprisingly “Before he died, the lockdown started is over because people have stories right
absent, with an overwhelming focus on and that meant we couldn’t go out any through their life, right through toddler
information. Telling us how to wash our more together. He found it hard years and teenage years and adults.”
hands and maintain social distance do not because, before he was ill, we couldn’t *Not their real names
teach and nourish us in the way that go out to celebrate his birthday. It was ● Surviving Through Story:
stories do, told authentically by people very hard for me that he passed away www.survivingthroughstory.com;
themselves in their own unique ways. because I really did love him and he was f www.facebook.com/
Surviving Through Story is a partnership my soulmate. I just wish he was still survivingthroughstory/
between the Open University, here with me… To help other people, I
Generate UK and the Three Ways School would say that, even though your Additional material by: Liz Tilley, Sue
in Bath that seeks to change this husband has gone, try to think of all the Ledger, Open University; Beverley
perception. Our Facebook page reached good memories and good times you had Dawkins, Generate UK; Flo Hopwood and
219,000 people in 10 weeks and our and the good life you had. Desmond Katrina Arab, Three Ways School (Bath)
ongoing training has been attended by up was the best husband in the world and I
to 90 people at a time. Our website will always have that.” References
features stories, artwork, films, photos Grove S, Grove N, Myerscough T (2010)
and tributes to friends and loved ones. It is rare to see real experiences in the Intellectual disabilities and war: issues for
The 1940s were a previous time of major media although, in the Guardian, Rory consideration. Journal on Developmental
crisis; but how many people know about Kinnear’s (2020) account of the life of his Disabilities 16(1):82-90
the role played by people with learning sister Karina, who died of Covid-19, and Paddle KC (1946) Botleys Park Mental
disabilities in the war effort? The evidence Shaun Webster’s testimony, featured in Deficiency Colony, Chertsey, Surrey, England,
during the war, 1939–1945. American Journal
is sparse, but research has unearthed Saba Salman’s book (pages 16-17) and the of Mental Deficiency 51(2): 306–313
references to army volunteers, engagement Guardian (2020), are exceptions. Kinnear R (2020) ‘My sister died of coronavirus.
in rebuilding and taking on the roles of Neither the BBC (Covid Chronicles) nor She needed care, but her life was not disposable.’ Seán Kelly/www.seankellyphotos.com
workers (Paddle, 1946; Grove et al, 2010). ITV (Get Britain Talking) responded to a Guardian https://tinyurl.com/ycctsc5u
How are people with learning request to feature the voices of people Webster W (2020) “My learning disability is a
disabilities responding to the coronavirus with learning disabilities, and omitted bit of me, but it doesn’t define me.” Guardian
emergency? Is there anything we can them altogether. https://tinyurl.com/y2abbvql

24 Vol 34 No 1 | Autumn 2020 Community Living www.cl-initiatives.co.uk