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One community? How making

ISSN 0951-9815
Volume 33, no 3, spring 2020 assumptions can leave people out

Published by
CL Initiatives Ltd ince the late 1980s, Liz Tilly has been battling away in the West Midlands, setting
No 6 The Square up a succession of voluntary organisations that support and involve people with
Waterhouse Green Smoderate or mild learning disabilities (pages 20-21). She is a real unsung hero.
Whittle-le-Woods, Chorley
Lancashire PR6 7LF Her motivation has been that this group often fall between the cracks; they are seen
Tel 0125 727 0430 as too able to need support yet struggle to cope in society. This can result in them
leading deeply isolated, ignored and poverty-stricken lives. Tilly has fought for decades
Subscription enquiries
Rosemary Trustam (with great success) to give them the self-confidence, resources and support they need.
Tel 0125 727 0430 At the other end of the learning disability spectrum, we continue our debate over
rosecli@btinternet.com whether people with profound and multiple learning disabilities are genuinely included
CL Initiatives Ltd
(address as above) under the learning disability umbrella.
Clare Palmer and Virginia Bovell (page 12) talk about their experience as parents of
Editor feeling marginalised within the learning disability community and how common ideas
Simon Jarrett
simonj@jarr.demon.co.uk around self-advocacy seem to exclude their profoundly disabled family members.
There is an important lesson we must take from these two very diverse perspectives.
Production editor and designer The catch-all term of learning disability can be as much of a hindrance as a help. It can
Christy Lawrance
www.clcomms.com be a help in enabling
people to secure funding
Social media editor label. It can be a hindrance “
and support they would be
Rosemary Trustam The goals of personal fulfilment
t @CommLivingmag unlikely to get without the and having control may be the same
f www.facebook.com/
CommunityLivingMagazine in that it implies that, for different people, but what these
Research across the incredibly wide mean in practice and the route to
Julie Ridley spectrum of learning
Reader in social policy and practice, University disability, there can be achieving them will vary a lot
of Central Lancashire housing, employment, support, social life, education, health and independence. ”
one-size-fits-all support
Photographer solutions which apply to
Seán Kelly
www.seankellyphotos.com
What constitutes independence for an unemployed, isolated person in West Bromwich
Cartoonist/illustrator with a mild learning disability is immeasurably different from what self-determination
Robin Meader means for a person with profound disabilities and high health needs who is moving for
robinmeaderartist@gmail.com
the first time from family care in London.
Legal correspondent The ultimate goals of personal fulfilment and the ability to control their own life as
Belinda Schwehr LLM much as possible may be the same for different individuals, but what these mean in
Legal framework trainer and consultant
Care and Health Law practice and the route to achieving them will always vary considerably.
belinda@careandhealthlaw.com This is why lone voices in the voluntary sector and parents fighting their child’s corner
must be listened to when they raise voices that conflict with received wisdom.
Publisher
Rosemary Trustam It is also why the government and commissioners must not think that there are
rosecli@btinternet.com universal solutions it can apply to tick its learning disability target boxes.
Editorial Board
Jo Clare, chief executive, Three Cs The rights we take for granted
Noelle Blackman, chief executive, Respond In this issue, a number of our contributors grapple with questions concerning rights.
Jo Adshead, chief executive, Linkability Are declarations of rights meaningful or just wish lists with no means of enforcement?
Sue Pemberton, chief executive, Integrate
Jane Lloyd and Debbie Forde, senior lecturers, Are rights enough or do we need something more – a certain type of community to
School of Social Work, University of Central enable people to enjoy their rights meaningfully? Do universal rights genuinely apply to
Lancashire everyone – or do they sometimes exclude some because of how they are structured?
Helen Atherton, lecturer in nursing, University
of Leeds We air these questions in a spirit of enquiry and open debate, and to encourage a
Sally Warren, managing director, Paradigm thoughtful understanding and appraisal of rights to ensure they are actually effective.
Rosemary Trustam To ask such questions is not to deny the need for rights. We should take heed of Sally
Gill Levy
Gabby Machell, CEO, Westminster Society Warren and Jo Giles (pages 22-23), who write about a simple exercise they use when
Lynne Tooze, independent sexual violence training support staff. How does it feel, they ask, as we remove, one by one, the rights
adviser, Respond you routinely enjoy? As people imagine not being able to choose who they live with,
Isabelle Garnett
Simon Jarrett who comes into their home and whether to refuse medical treatment, they realise how
essential such basic rights are to their daily lives.
Printed by Our shock should not be at how much we take these basic rights for granted but at
Character Graphics, Taunton,
Tel 01823 279008 how a section of the population are so often denied rights the rest of us would not be
prepared to live without.
© CL Initiatives Ltd 2020
Registered charity no 1141176
Company no 7530680 Simon Jarrett
Editor
www.cl-initiatives.co.uk Community Living Vol 33 No 3 | Spring 2020 3