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self-advocacy
Life in lockdown and beyond

Learning Disability England has been at the forefront of self-advocacy throughout lockdown.
Self-advocates Ben McCay, Patricia Charlesworth, Richard Keagan-Bull, Chelsea Lovell and family
carer Kate Chate discuss what they have learned, and what must change

erhaps the single biggest change for Everyone agreed that digital was now We hope lessons have been learnt by
us during Covid has been the move an important part of their lives and would government departments as, ultimately,
Pto online. At the beginning of the continue after Covid (see box). they have a statutory duty to make sure
pandemic, everyone said they had information is accessible to everyone.
never used Zoom or Teams, and several Vulnerable and ‘other’
people did not own a smartphone, tablet The group talked about how the The right to stay alive
or computer. “vulnerable” description used about LDE joined voices with over 70 other
The how-to, easy-read guides on people with learning disabilities during disabled people’s organisations and allies
technology that members created and the pandemic made them feel. early in the pandemic in an open letter
Learning Disability England (LDE) shared “Yes, lots of us had to supporting a statement
during those early days proved to be very shield,” said Chelsea Lovell. about the rights of disabled
valuable. Despite initial worries, everyone “But that doesn’t mean we people during Covid 19.
has embraced this new digital world. As weren’t contributing to our Members were all
Pat Charlesworth commented: “I don’t community. Why weren’t concerned about media
know what I would have done without those stories being told?” coverage and letters from
Zoom – I’d have gone mad.” Charlesworth added: “It’s GPs about do not attempt
Self-advocacy and grassroots as though the media and resuscitation (DNAR) notices.
organisations quickly set up activities politicians were determined LDE ran a significant DNAR
ranging from dance classes, quizzes and to see us as different. To campaign and joined forces
craft groups to meetings and support portray us as more needy with Turning Point to develop
networks. One example was the Creating than everyone else. Everyone a DNAR toolkit for people
Connections project between SeeAbility is vulnerable in some way. with learning disabilities and
and LDE. Others were My Life My Choice’s This determination to make us ‘other’ is the people who support them.
Phone Buddies and Computer Buddies very dangerous. It blocks inclusion.” The LDE representative body co-chairs
and their online festival – Ben McCay The group talked about the different said at the time: “Decisions on people’s
oversaw much of that work. ways they had contributed through the treatment being made based on them
pandemic. This included organising having a learning disability are never OK
groups such as a film club and art classes, – even one is too many.
Together through technology a campaign to persuade local NHS “We are pleased to hear there are
managers to prioritise people with examples of people and their supporters
“It’s helped me to be much more learning disabilities for vaccination, rolling being positively involved but we want to
connected to people across the out mental health training and advising see all lives valued and people not fearful
country, and to take part in things I on identifying local needs and reasonable of others writing them off.”
just couldn’t have done face to face adjustments around vaccination, including LDE worked in partnership with the
because of my family.” Kate Chate supporting people terrified of needles. British Institute for Human Rights to run
a number of workshops, which led to two
“It’s nice Accessible information in one place BIHR reports.
not to rush Accessible information on the ever- We need action now to stop DNARs
around and to changing lockdown rules was vital and being used wrongly once and for all. That’s
be able to sit was not being produced by government. why we are working with the BIHR to do a
in pyjamas. LDE self-advocates led the creation of human rights analysis of the experiences
It’s so much many resources in partnership with Photo of people with learning disabilities, their
easier and Symbols, Books Beyond Words (pictured families and paid supporters.
cheaper. Though it will be nice to see is an image from a booklet on coronavirus A Learning Disabilities Mortality Review
people and cuddle people again.” vaccination), Mencap and others. Within (LeDeR) report and policy, Learning from
Richard Keagan-Bull the first few weeks of the pandemic, LDE Lives and Deaths, was published in March
had developed an open access 2021. The way forward includes ensuring
“We need to make sure Coronavirus Hub to share them. changes are made to the system –
events in the future are This also included work by NWTDT outcomes have been set to reduce
a hybrid of in person Pathways and their Signalong sessions, avoidable death and to include individuals Books Beyond Words/CC BY-NC-SA 4.0
and online. It’s so and Lewisham People First’s weekly music and families – which is reassuring. It feels
much more inclusive.” sessions. As LDE has often observed, like a positive step in the right direction. n
Chelsea Lovell people who don’t use speech to l Links to the initiatives highlighted in this
communicate can be left out. article are included in our online issue

10 Vol 34 No 4 | Summer 2021 Community Living www.cl-initiatives.co.uk