Monthly Archives: June 2016

Whose Voice counts?

I blogged last week 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 alongsde 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.

Launch of Learning Disability England June 14th 2016

It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now. Gary Bourlet puts it well here

Our host was Baroness Sheila Hollins, and she was joined on the platform by another redoubtable House of Lords campaigner, Jane Campbell. Jane’s speech was especially memorable, on an exceptionally memorable day. I liked ‘We are not vulnerable, we just find ourselves in vulnerable situations’. And, momentously, she acknowledged something people associated with self advocacy have been saying and thinking for many years, that the early disabled people’s movement, of which she was a leading light, failed to acknowledge the voice and different experiences of people with learning disabilities. She promised this will change.

A minute’s silence for all those who have died in Assessment and Treatment Units was incredibly moving. And, personally, I was delighted that my dear old friend Jackie Downer was one of a number of self advocates who were awarded lifetime membership of LDE.

As ever, I was prompted to thnk about the historical context. A united voice for people with learning disabilities in England (unlike Scotland and Wales which both have national People Firsts) has been a very long time coming – and, although I hope to be proved wrong, I am not sure it is here yet. I remembered a conference back in 1994 which sought to set up a national People First in England. Held in an anonymous hotel in Daventry, of all places, one man and one woman from every town or county was invited. Many places responded. Some delegates had never been out of their home towns before, let alone to a national conference, whilst others, like Lloyd Page, Nigel Lott and Ian Davies were experienced campaigners. Another amazing time observing self advocacy at work, one of so many I’ve been privileged to experience in my life. It was a harmonious occasion, and was crowned with a visit from John Bowis, then a minister (in a Tory Government) who offered £50,000 (as I recall) to set up a national organisation. Hard to believe it, but I saw and heard this. Unfortunately, there was one large and well established self advocacy organisation who refused to play ball. And the initiative foundered. Until today, that was as near as we have come to a united voice for self advocacy in England.

But there were significant absences yesterday too. Mencap, the self proclaimed ‘Voice’ of learning disability, was not represented. And I saw few National Forum members, although leading members of the National Valuing Families Forum were there. Is this ominous? I really hope not. As I said, this united voice really is needed, and it is to the credit of all involved that it has got this far, with many well wishers. If you agree with me then do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.