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