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campaigning

Learning Disability England: ‘This is what you’ve

said – and this is what we’ve done’

People with learning disabilities are a disparate group and, when you add friends, allies and
family, that makes for lot of different opinions. Seán Kelly finds out how Learning Disability
England works to bring about change while representing those it speaks up for

earning Disability England is “bringing way up from being an advocate to being Smith says the process is like standing
people and organisations together to director of different groups.” to be an MP in parliament: “We do
Lcreate a movement for change where She tells me she has a permanent manifestos and say why we want to be on
people with learning disabilities, families, position with the NHS as a learning the rep body and really bring our skills
friends and paid supporters come disability autism network manager: “It feels and qualities to that. We get voted in by
together on an equal basis”, according to good to say I am a trustee or a director.” our members and then we get to sit on
its website. Jordan Smith co-chairs the the rep body for a specific amount
It also wants to make sure that “what is representative body at LDE. The rep body, of time.
important to people with learning as it is usually called, is made up of 12 “Why LDE is different is that it is
disabilities is heard and understood”. people. Four are self-advocates like Smith, member led. We listen to our members
Fair enough, you might think. We need four are family members or friends, and and that is what shapes our work.”
a movement to speak up about the four are paid supporters. Clark says: “The rep body is the most
changes that are needed so people with These three groups are the three voices important bit. And that’s sometimes
learning disabilities can have better lives. that decide LDE’s position. a bit tricky to manage because the
But think a little more and it becomes trustees also are an equally but different
clear that the task is not so important bit because they have the
straightforward. People with learning Sometimes, we will put a legal responsibility.”
disabilities are a disparate group and, statement out we know that Smith agrees: “None of this is tokenistic.
once you add in family members and We are not here because we have to have
friends and allies, that’s a lot of only maybe 80% of our people with learning disabilities or autism.
potentially different views. members agree with but we If I wanted tokens, I’d go to the funfair!”
You start to wonder: how does Learning Both groups are supported by the
Disability England decide what changes to have to represent the majority small central team. At the time of
push for? Well, recently I met with three writing, elections for the rep body were
people from LDE to find out more. taking place.
Jodie Williams is a self-advocate and Smith also has a role as advocacy lead After that there are plans to increase
trustee of LDE. As a trustee with learning at Dimensions but says: “I am not a the number of trustees. They had planned
disabilities, she is pleased to also co-chair director of anything. The only thing I to do that in 2020 “but we did Covid
the trustees, along with Sarah Maguire, direct is my life, which is very important.” instead”, says Clark.
chief executive of Choice Support. I soon learn that Smith can be relied on to They are also very aware that they need
Williams says: “I really, really enjoy the keep the smiles coming. to improve the diversity on the trustee
opportunity because I feel like people Sam Clark has been chief executive of board. Currently, the trustees are made
with a disability and autism don’t get LDE since 2018. “I think a big part of my up of what Clark calls a group of “really
chances like this, and I have worked my job is to support and facilitate other people brilliant women. But, you know, they are
leading rather than being a traditional chief all white women.”
exec who leads everything,” she says. Williams explains that all trustees are
“So actually LDE works really hard to try on the main committee, with some also
to do things differently – and I really on subcommittees dealing with finance
believe in that. Sometimes that means or staffing.
things are a bit more complicated for us “We help manage the staff, the money,
or we wrap ourselves in knots but I think anything that Sam needs help with. She Learning Disability England: Jodie Williams; Seán Kelly/www.seankellyphotos.com: all other images
we are learning about how to do that.” would come to me and Sarah and we
So, let’s hear more about the would have a discussion.”
knot-wrapping. It sounds pretty supportive and Clark
Well, the first thing all three want to confirms that she has not been left to deal
make clear is that the rep body is not just with difficult issues on her own.
a participation group – it is part of LDE’s
legal structure. Disagreements and communication
As well as deciding where LDE stands on I ask Smith what happens if some of the
issues, it chooses the trustees. Rep body groups on the rep body disagree on an
Chief executive Sam Clark: “A big part of my job members are voted in by the wider issue. He says it is essential to consult the
is to support and facilitate other people leading” LDE membership. wider membership group and describes
20 Vol 35 No 4 | Summer 2022 Community Living www.cl-initiatives.co.uk