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ADVOCACY
o s eaks o eo le wi

lea nin isa ilites

Does self-advocacy always trump parent and family advocacy?
Do they have fundamentally diferent aims? an al sle begs to
difer, and calls for unity.

o s oul s eak o eo le wi disabilites, was then a care worker. worker’s presence enabling Steven’s
lea nin isa ilites As she says in her book, (3) liberty to depriving him of it” (4).
“My colleagues and I had a suspicion
was o e o ake is e su ec that, if only they [families] would be less Don’t believe Neary? Then here is what the
I o colu n e i e e c an es risk averse, protectve and interfering, House of Lords had to say in 2014 about the
on ace ook w ic ece e e closin their adult children would be leading operaton of the Mental Capacity Act 2005
own in u us is ea o even a s much more rounded, satsfying lives”. in the case of P: “The general lack of aware-
o cton . even a s o cton was a ness of the provisions of the Act has allowed
ca ai n le a il e e s The stage was set for the batle played prevailing professional practces to contnue
o aw a enton o e contnuin out on Facebook in August, with one unchallenged, and allowed decision-making
e enton o seve al ousan eo le in energetc self-advocate castgatng the to be dominated by professionals, without
ssess en an ainin ni s s . campaign because it was not led by the required input from families and carers

was e ectve. ea u e u an people with learning disabilites. about P’s wishes and feelings”(5).
s o ies o i li e issue
aine ai t e on an a io o Self-advocacy has made To claim that people with learning
a ilies an skil ull use social e ia. only minor, symbolic inroads. disabilites can even begin to challenge the
power of local authorites in maters such
listen to people with
I am not privy to the reasons for the The ‘system’ just does not as MCA Capacity Assessments and DoLs is
leaders’ sudden resignaton but its learning disabilites. to enter a Kafaesque world. I wrote about
Facebook page indicated that a factor I would not have dared to write this even this in a previous column (6) – it’s a
was atacks on them by a leading member pernicious misuse of once enlightened
of People First for not being people with theories to camoufage neglect and control.
learning disabilites. Given that those fve years ago, for fear of being labelled a
people most afected, the people inside reactonary. But now I believe that it is It is tme to put old batles behind us.
ATUs and similar insttutons, can barely tme to point out that families, allied with Families, people with learning disabilites
make a phone call without permission, self advocates, make the most efectve and their allies just have to work together
it was in my view unrealistc, to say the campaigners. Self-advocacy alone has to defend people’s human rights.
least, to expect them to front a campaign. made only minor, ofen symbolic inroads,
As one post put it, “This group was like the under-resourced Natonal Forum
about supportng families in distress for People with Learning Disabilites 1. htps://www.sevendaysofacton.net/
and providing a voice for those that (2002-2017). The ‘system’ just does not 2. htps://www.facebook.com/
don’t have one” (2). listen to people with learning disabilites. groups/7daysofacton/
3. Dumbleton, S (2013) Goodies and
This argument about who has the right to Divide and rule suits professionals and baddies: equivocal thoughts about families
speak for people with learning disabilites local authorites. They can pit families using an autoethnographic approach to
goes back to the 1980s. Untl well afer against their relatves, to positon explore some tensions between service
People First started in London in 1984 the themselves as champions of the person’s providers and families of people with
people who spoke up for people autonomy. Don’t believe me? Then I learning disabilites, Ethics and Social
with learning disabilites were families, commend to you the blogs of those family Welfare, 7 (3) pp. 282 -292.
in organisatons like Mencap, Natonal campaigners, most notably Mark Neary 4. Neary, M (2017) The Descent of DoLs
Autstc Society and Contact a Family. and Sara Ryan, in the forefront of batles htps://markneary1dotcom1.wordpress.
But gradually, as People First gained to win a semblance of an ordinary life for com/2017/05/10/the-descent-of-dols/
confdence, the case for their being the their relatves and other people with 5. House of Lords (2014) Mental Capacity
spokespeople was made – and learning disabilites. Here is Mark Neary Act 2005 Post Legislatve Scrutny htps://
energetcally supported by people, describing how Deprivaton of Liberty publicatons.parliament.uk/pa/ld201314/
including me, who regarded themselves Safeguards (DoLs) are being used to ldselect/ldmentalcap/139/139.pdf
as progressive allies. I recall facilitatng monitor his role in relaton to his son 6. Walmsley, J. (2017) When government
role plays in which family members were Steven. Commentng on his son’s frst takes up your best ideas be scared, be very
pited against advocates – the family community DoLs which decided that he scared... Community Living, 30 (4), p. 11
member always positoned as over- is being deprived of his liberty in his own
protectve, standing in the way of the home, he wrote: “The fact that he needs a Jan Walmsley is Professor of Learning
person’s independence. I was far from support worker to accompany him when Disability at the Open University and
alone. My friend Sue Dumbleton, he takes some cake across the road to his author of numerous books and artcles on
now mother of a daughter with learning uncle is now reframed from the support learning disability.

24 Vol 31 No 2 | Winter 2017 o uni Living www.cl-initatves.co.uk