Why families, providers and self advocates need to work together

I blogged in June about the fabulous launch of Learning Disability England. But noted then that there are pitfalls which have confounded previous attempts to speak with a loud and united voice by, for, with and on behalf of people with learning disabilities.

It was therefore not a surprise (although slightly disappointing) to see the knives coming out already. What are the grounds for criticising LDE? In the case I saw, it is that this is an organisation which has the temerity to include families AND service providers alongside people with learning disabilities. And that these voices might drown out the voices of self advocates. Notwithstanding the very clear message from LDE that it will be led by self advocates. A message strongly reinforced at the launch on 14th June, where self advocates easily outnumbered others on the platform; and when the only lifelong membership awards were to self advocates.

The question of who can speak with people with learning disabilites has a long history. I won’t go into it here, but will be publishing and speaking about it in the next few months. Suffice to say, the early parents’ movement was paternalistic, patronising, and often infantilising. But it did contribute to closing institutions, and above all it shouted the message that our sons and daughters are human beings too and deserve support and recognition, not confinement. At a time when too many people were just locked away, and forgotten about. That was so important.

Then along came self advocacy, in the 1980s. ‘Speaking for Ourselves’ its watchword. It drove a wedge between families and people with learning disabilities as a political voice. It needed to, because families had too easily assumed that they knew best. The upshot was that two Forums, not one, were set up in the wake of Valuing People; one, the National Forum, representing self advocates; the other, the National Valuing Families Forum. Two voices (at least), not one.

I have since the 1980s been an active and passionate supporter of self advocacy. It truly has transformed the way some people with learning disabilities are viewed, and view themselves. I am proud to count self advocates amongst my friends.

BUT, alone self advocates have had little impact on national policy. The Valuing People process included self advocates (and families), but without significant behind the scenes manouevring by a group of academics and others to gain the trust and support of Minister John Hutton, there would not have been a White Paper in 2001. Self advocacy was supported in the White Paper, and money was set aside for it as part of the White Paper legacy. But self advocates were not strong enough to retain that funding. And now state funding for self advocacy is shrinking fast, many self advocacy organisations are struggling, and many areas are devoid of self advocacy groups. It is hard to believe that self advocates alone will be able to exert the pressure we need.

At a time when social care funding is under unprecedented pressure, when there are still at least 3000 people detained in ATUs, and when it appears that more than one NHS Trust fails to investigate unexpected deaths of people with learning disabilities, i am convinced that families and people with learning disabilities have more to gain by working together than by focussing on the issues that divide them. Justice for LB has shown the way, a family initiated campaign supported at every turn by Oxfordshire’s Self advocacy group My Life My Choice. We need a very loud and united voice for people with learning disablities. This is why I wholeheartedly support the coalition represented by Learning Disability England.