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campaigning

the Zoom calls, catch-ups and
conversations that went on during
the pandemic.
“We know that everyone communicates
differently. That might be through a
discussion, it might be through easy read.
It might be through surveys. We have a
newsletter that goes out every week
where we tell members: ‘This is what
you’ve said – this is what we’ve done.’”
“You have to gather – what’s the word?
– consensus, for one position, which can
be quite difficult. And, sometimes, we will
put a statement out there that we know
that only maybe 80% of our members
agree with but we have to go with the
80% because we have to represent
the majority.”
Discussion and persuasion on the rep
body is an important part of the process. People with learning disabilities should live as
Clark says it is not uncommon for a long and as healthily as others, says Jordan
member of the group to come up with an Smith (left): “Why do we have to continue to
angle that others have not considered. fight on these issues?”
“And everybody will say: ‘Oh I hadn’t
thought about that. Well, now I have struggle is if there are any staff or financial
thought about it, I don’t think the same.’” problems, or if people are not being
Are the three member voices each very nice.”
given equal weight? Clark says, yes, they They can all recall when something like
are equal, but Rob Greig (a member of that happened. Smith adds that because
the rep body) introduced the idea that a lot of what LDE does is in the public
the self-advocates should be the first eye, they are always at risk of “trial by
among equals. social media”.
So the self-advocates are always first to He adds that limited staffing capacity
give their opinion on an issue, followed by sometimes means that LDE cannot do all
family and friends and paid supporters. the things it would ideally want to do. But,
Clark says: “One of the things we’ve overall, it is clear that involvement with
been clear on is that we try and work out consensus on taking this position of more LDE is a positive experience for rep body
what we can all agree on. And, if we can’t than 80%. Of course, some people members and trustees.
agree, then it might be that we don’t do disagreed and supported the Down “The rep body are all volunteers,” Smith
something about it at that point, because Syndrome Bill as it stood. says. “We all volunteer our time because
LDE exists to take action on the things that Even so, there was still an underlying we want to help people, because we all
those three member voices agree on.” agreement and mutual respect, says have experience of having a learning
Clark: “So, actually, the members who disability or autism, or experience of
Strong view on Down syndrome law supported the bill still agreed that we being a family carer, or experience of
A fairly recent example was the Down want something for everybody to have a working in social care.
Syndrome Bill. LDE took a firm stance, good life.” “I want my friends who have got a
saying: “We will only support the bill learning disability and who have got
if it includes all people with a learning Agreeing to disagree autism to live as long and as healthy as my
disability.” Clark says this is the pay-off from a lot of brothers who don’t. Why do we have to
There was groundwork: “I think the biggest thing continue to fight on these issues?”
a fairly that has changed over the last few years is Williams agrees: “I want more people to
strong the shared understanding. I think we have see what people with disabilities can do
worked really hard to build and to trust rather than what we can’t do. A lot of my
each other. To be able to say – I don’t life, people have not given me the chance
agree with this, I don’t agree with that, or to do a lot of things. They say: ‘Oh you
deal with problems.” can’t do this.’
It sounds almost too good to be true. ”But I have just got my own place with
Have they found nothing difficult? I wonder. my own mortgage. I have got a partner. I
“When do we struggle?” Clark asks, and go out like everybody else. I go to pubs. I
Williams replies: “I think when we go to concerts. I do everything like
everybody else. Why can’t I have a life
Jodie Williams: ”A lot of my life, people have like that?”
not given me the chance to do a lot of things. And who could argue with that?
They say: ‘Oh you can’t do this’ ” Not me. n
www.cl-initiatives.co.uk Community Living Vol 35 No 4 | Summer 2022 21