Does self-advocacy always trump parent and family advocacy? Do they have fundamentally different aims? Jan Walmsley begs to differ, and calls for unity.
Quote: Self-advocacy has made only minor, symbolic inroads. The ‘system’ just does not listen to people with learning disabilities.
Who should speak for people with learning disabilities?
I was prompted to make this the subject of my column by the bitter exchanges on Facebook which preceded the closing down in August this year of Seven Days of Action (1). Seven Days of Action was a campaign, led by family members, to draw attention to the continuing detention of several thousand people in Assessment and Training Units (ATUs). It was effective. It featured human stories to highlight the issue, gained airtime on TV and radio for families, and skilfully used social media.
I am not privy to the reasons for the leaders’ sudden resignation but its Facebook page indicated that a factor was attacks on them by a leading member of People First for not being people with learning disabilities. Given that those people most affected, the people inside ATUs and similar institutions, can barely make a phone call without permission, it was in my view unrealistic, to say the least, to expect them to front a campaign. As one post put it, “This group was about supporting families in distress and providing a voice for those that don’t have one” (2).
This argument about who has the right to speak for people with learning disabilities goes back to the 1980s. Until well after People First started in London in 1984 the people who spoke up for people with learning disabilities were families, in organisations like Mencap, National Autistic Society and Contact a Family. But gradually, as People First gained confidence, the case for their being the spokespeople was made – and energetically supported by people, including me, who regarded themselves as progressive allies. I recall facilitating role plays in which family members were pitted against advocates – the family member always positioned as over-protective, standing in the way of the person’s independence. I was far from alone. My friend Sue Dumbleton, now mother of a daughter with learning disabilities, was then a care worker. As she says in her book, (3) “My colleagues and I 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”.
The stage was set for the battle played out on Facebook in August, with one energetic self-advocate castigating the campaign because it was not led by people with learning disabilities.
Reactionary?
I would not have dared to write this even five years ago, for fear of being labelled a reactionary. But now I believe that it is time to point out that families, allied with self advocates, make the most effective campaigners. Self-advocacy alone has made only minor, often symbolic inroads, like the under-resourced National Forum for People with Learning Disabilities (2002-2017). The ‘system’ just does not listen to people with learning disabilities.
Divide and rule suits professionals and local authorities. They can pit families against their relatives, to position themselves as champions of the person’s autonomy. Don’t believe me? Then I commend to you the blogs of those family campaigners, most notably Mark Neary and Sara Ryan, in the forefront of battles to win a semblance of an ordinary life for their relatives and other people with learning disabilities. Here is Mark Neary describing how Deprivation of Liberty Safeguards (DoLs) are being used to monitor his role in relation to his son Steven. Commenting on his son’s first community DoLs which decided that he is being deprived of his liberty in his own home, he wrote: “The fact that he needs a support worker to accompany him when he takes some cake across the road to his uncle is now reframed from the support worker’s presence enabling Steven’s liberty to depriving him of it” (4).
Don’t believe Neary? Then here is what the House of Lords had to say in 2014 about the operation of the Mental Capacity Act 2005 in the case of P: “The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P’s wishes and feelings”(5).
To claim that people with learning disabilities can even begin to challenge the power of local authorities in matters such as MCA Capacity Assessments and DoLs is to enter a Kafkaesque world. I wrote about this in a previous column (6) – it’s a pernicious misuse of once enlightened theories to camouflage neglect and control.
It is time to put old battles behind us. Families, people with learning disabilities and their allies just have to work together to defend people’s human rights.
References
- https://www.sevendaysofaction.net/
- https://www.facebook.com/groups/7daysofaction/
- 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, 7 (3) pp. 282 -292.
- Neary, M (2017) The Descent of DoLs https://markneary1dotcom1.wordpress.com/2017/05/10/the-descent-of-dols/
- House of Lords (2014) Mental Capacity Act 2005 Post Legislative Scrutiny https://publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf
- Walmsley, J. (2017) When government takes up your best ideas be scared, be very scared… Community Living, 30 (4), p. 11
Jan Walmsley is PRofessor of Learning Disability at the Open University and author of numerous books and articles on learning disability.
