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cAmpAIgNINg cAmpAIgNINg

SpEAKINg WITH who were over-protective, which gave many opportunities to
‘divide and rule’ by politicians, civil
who underestimated potential?
oNE VoIcE Sue Dumbleton, now herself the mother servants and others, weakening further
of a daughter with learning disabilities,
an already weak voice.
recalled that as a care worker in the
1980s she and her colleagues: Now, many of the things that gave
It is vital that families and self had a suspicion that, if only they a sense of optimism back in the late
advocates unite. They have much [families] would be less risk averse, 1980s appear to be foundering.
to gain and a great deal to lose protective and interfering, their Austerity, welfare benefit ‘reforms’,
adult children would be leading
the demise of many partnership
by not speaking in one voice, much more rounded, satisfying lives boards, the loss of self advocacy
says Jan Walmsley (Dumbleton, 2013). organisations across the country,
the failure to act following three
Divergent damning reports into Southern Health
Citizen advocacy developed, on the FT, and the continuing detention of
n February, I was People with learning disabilities had premise that people with learning at least 3,000 people in out of area
I immensely cheered to no public voice – people did not really disabilities needed independent secure placements all together cast a
see the photo (right) of believe they could have opinions and advocates, people who would stand shadow over hopes for a better life for
representatives of the speak for themselves. with the person, and support them in people with learning disabilities.
National Forum of People asserting their rights. Families could
with Learning Disabilities It was not until the 1980s that self not be relied upon to do that; indeed Lead role
and the National Valuing advocacy for people with learning families were seen to be part of the Families are once more taking the lead
Families Forum. They were disabilities began to take hold. problem. This idea, that the interests of role in challenging what is happening,
marking the day when The first People First group was formed people with learning disabilities and as they did back in the 1960s.
together they forced the in 1984, in London, by delegates who the interests of their families were Now there is an explicit recognition,
Mazars Report onto the had been to an International People divergent, really took hold. I was certainly by the leadership of the two
agenda of the National First Conference and came back myself a subscriber to this view. Forums, and by many other vocal
Learning Disabilities Board inspired to start the movement here. parent advocates, like Connor
next time it meets. It did not take long before more groups Viewing families as part of the problem Sparrowhawk’s mother Sara Ryan, Craig Hart and Kerry Martin of the National Forum of People with Learning Disabilities
were started and the idea that people also has attractions for professionals, that the work has to be with, not for and Julia Erskine and Vicki Raphael of the National Valuing Families Forum outside the
Amazingly, Mazars, the NHSE with learning disabilities should be despite the fact that about half of all people with learning disabilities. Department of Health. They were marking the day when together they forced the Mazars
commissioned independent report into listened to gained momentum. adults live with their families (FPLD, Report onto the agenda of the National Learning Disabilities Board next time it meets.
Photo: Vicki Raphael
unexpected deaths in Southern Health 2012), and Personal Budgets have It is vital that families and self
Foundation Trust, had not been thought I well remember the year,1986, increased reliance on families to advocates unite. They have far more
worthy of the Board’s attention until, after the Open University (where I was manage budgets and employment in common than divides them; and a caring Activism
with one voice, people with learning working at the time) had launched (Glendinning et al 2015). Using the great deal to lose if they do not speak
disabilities and families together made Patterns for Living, a course for parents ideology that people with learning with one voice. That is why seeing the A 21st century concept of care
the case. It’s that word ‘together’ and carers to study together. We were disabilities need to assert their photo was so very cheering. By Peter Limbrick
that is the subject of this article. lobbied vehemently to include people independence from their families, Edited by Professor Hilton Davis
with learning disabilities in the professionals and support workers can References Published by Interconnections, 2016. 96 pages. £12.99
Legacy audience. How dare we produce a appoint themselves as the champion Glendinning C, Mitchell W & Brooks J
In the wake of Valuing People, course about learning disability which of people’s rights to take decisions for (2015) Ambiguity in Practice: Carers This new book offers a way to support vulnerable people in any
country who get little or no support from any agency.
the 2001 White Paper, did not involve the people it was themselves, as adults, without involving Roles in Personalised Social Care in
two representative groups were about? The result was Patterns for families. Finola Moss, a parent England Health and Social Care in the It provides a lifeline to children, adults and elderly people who are ill or disabled
set up to bring the voices of people Living: Working Together, a version of activist, argued in her blog that the Community 23 (1) 23-32 and face such crises as being made homeless, leaving care of hospital
with learning disabilities and carers the course for people with learning Mental Capacity legislation is used Rolph S (2002) Reclaiming the Past: without effective support or a bleak old age with no visitors.
into the heart of policy making at disabilities. It was an exciting time, to deny her, and other families a say The role of local Mencap Societies
Westminster. Unlike much of the White the potential for change seemed in the lives of their relatives, on the in the Development of Community Care It is also a lifeline to agencies overwhelmed by the number of clients
Paper’s legacy (remember funding for enormous. Never again did I assume grounds of enabling adults to make in East Anglia 1946-1980 in need and increasingly limited by austerity measures.
self advocacy and the Learning I could leave people with learning their own decisions: Milton Keynes: Open University “[This book] is strongly recommended for all as a stimulus to their thinking
Disability Research Initiative?), disabilities out, however challenging At 18 it is ‘inappropriate’ for you Finola Moss (2015) online blog about what may be done to improve practice and provision.”
these two Forums remain – but as it was to include them. to make decisions for him, and you Foundation for People with Learning rob Ashdown, pmlD link
two separate groups. There is a story have no right to do so. Disabilities (2012) Learning Disability
behind this, one group speaking for That history left a legacy. (http:/FinolaMoss.wordpress.com) Statistics: Support http://www.learn-
families, the other for people with Parents, we began to believe, ingdisabilities.org.uk/help-information/
learning disabilities. could not be assumed to have the She is not alone, as the stories high- Learning-Disability-Statistics-/187696/
best interests of their sons and lighted in #7daysofaction, featuring Dumbleton, S (2013) Goodies and
Back in the mid 20th century when the daughters at the forefront of their individuals in ATUs, show graphically. baddies: equivocal thoughts about
parent advocacy movement got going thinking and actions. Wasn’t it parents families using an autoethnographic
there was but one voice. Parents in who held people back, denied them Orthodoxy approach to explore some tensions
the National Association of Parents of opportunities for independence, Thus it became part of the orthodoxy, between service providers and families
Mentally Handicapped Children for sexual relationships, for work? that the interests of families were not of people with learning disabilities
assumed they had the right to speak for Wasn’t it parents who dressed their necessarily those of their relatives. Ethics and Social Welfare,
their sons and daughters (Rolph 2002). adult offspring in childish clothes, Hence the two Forums set up in 2002. Vol. 7 No.3 pp. 282 -292.

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