Page 3 - Community Living Magazine 35-3

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As Down syndrome law is drawn

Community Living
up, debate must be respectful

ISSN 0951-9815
Volume 35, no 3, spring 2022 he Down Syndrome Bill is making its way through parliament and likely to become
law soon (pages 18-19).
Published by T The law will require the Department of Health and Social Care to produce
CL Initiatives Ltd
Link-Ability, Conway House, Ackhurst Business guidance for local authorities on providing support for people with Down syndrome in
Park, Chorley, Lancashire PR7 1NY health, care, housing and so on throughout their lives. There will be an onus on local
authorities to follow that guidance.
 www.cl-initiatives.co.uk
 clienquiries@outlook.com The bill has caused some controversy. Campaigners such as the National Down
t @CommLivingmag_ Syndrome Policy Group (NDSPG) say it is necessary because people with Down
f www.facebook.com/ syndrome are a particular type of person, with specific health and other needs.
CommunityLivingMagazine
 01257 241899 Longevity has increased for those with Down syndrome – many used to die young
because of their health vulnerabilities. There are needs around early-onset dementia,
Editor as well as care needs of a group of people who rarely reached old age in the past.
Simon Jarrett, simonjarrett1@outlook.com
Opponents of the bill argue it is divisive because all people with learning disabilities
Publisher and subscription enquiries have care and support needs throughout life and it is wrong that a particular group
Jo Adshead, Link-Ability (address as above), should be singled out for specific support (which they should be entitled to anyway).
clienquiries@outlook.com
Community Living has
Production editor and designer opted not to take a side
Christy Lawrance, www.clcomms.com but, instead, to give a Our contributors expressed both the
Contributors summary of the bill and wish to be respectful and the opinion
Welfare rights: Charlie Callanan invite self-advocates to
Research: Juliet Diener give their opinion, and that far more unites than divides the
Arts: Tracey Harding
Photographs and interviews: Seán Kelly, leave it to readers to learning-disabled community, whatever
www.seankellyphotos.com decide where they stand.
Illustrator: Robin Meader, robinmeaderartist@ Our contributors from the outcomes of this bill
gmail.com, https://tinyurl.com/robinmeader
Legal: Belinda Schwehr LLM, legal framework the NDSPG and Learning
trainer and consultant, Care and Health Law, Disability England have set
belinda@careandhealthlaw.com out their perspectives, as self-advocates, in favour of or expressing concern about it.
History: Susanna Shapland
Columnists: Simon Duffy, director, Centre for It is disappointing that some social media debates on the bill have become very
Welfare Reform; Suzanne Gale, social care angry, as is sadly the case when any sort of controversy comes to the fore online.
consultant; Sara Pickard, disabled people’s Our contributors were explicit that they did not want to be pulled into a slanging
employment champion, Welsh Government;
Jan Walmsley, independent researcher match. They expressed both the wish to be respectful and the opinion that far more
unites than divides the learning-disabled community, whatever the outcomes of
Editorial board this bill.
Jo Adshead, chief executive, Linkability
Helen Atherton, lecturer in nursing, University They have set a welcome example of how future debate should be conducted.
of Leeds
Noelle Blackman, chief executive, Respond Learning from history
Jo Clare, consultant and coach
Jenny Garrigan, director of quality and A number of articles in this issue draw parallels between the past and the present.
involvement/director of strategy, Thera Trust Stephen Unwin’s disturbing feature about the uncomfortable truths that are still with
Isabelle Garnett us more than 80 years after the horrors of the Nazi killing programme against people
Simon Jarrett
Gill Levy with disabilities shows that the present is not as enlightened as we like to think it is.
Gabby Machell, chief executive, Learning Unwin is keen to avoid simplistic parallels, but he points out that when respected
Disability Network London philosophers call for euthanasia of disabled infants, public intellectuals make claims
Sue Pemberton, chief executive, Integrate
Lynne Tooze, independent sexual violence about the suffering that people with disabilities bring into the world and the truth of
adviser, Respond eugenic science, and the medical professions show disturbing levels of prejudice
Sally Warren, managing director, Paradigm
towards people with learning disabilities, there is no room for complacency.
Cover image: Fiona Yaron-Field/Wellcome Collection CC BY 4.0 © CL Initiatives Ltd 2022 in the early 20th century – such as intrusive “gatekeeping” by carers, labelling and
Nathaniel Lawford and Jackie Reeve’s fascinating article about an inclusive history
Printed by
project researching Grace Eyre, a pioneer of the idea of shared lives, also relays some
Character Graphics, Taunton,
Tel 01823 279008
uncomfortable truths. Many problems that people in shared lives settings experienced
barriers to independence – are still experienced by people in similar settings today.
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Finally, Susanna Shapland’s article about people with learning disabilities
“absconding” from institutional settings begins in the 1940s but ends far more recently
with Alexis Quinn’s “escape” from an assessment and treatment setting in 2016. Lock
people up with no good reason, and they will have the courage to attempt to break out.
Society changes, and history does not simply repeat itself but it can cast a powerful
shadow over all our lives, none more so than those of people with learning disabilities.

Editor

www.cl-initiatives.co.uk Simon Jarrett Community Living Vol 35 No 3 | Spring 2022 3