Saturday, 17 May 2014

Story Sixty Six - It

Lucy Series left a comment on the "Curly Arms" post about the way that people with learning disabilities are treated like a project. She linked to a recent Court of Protection case, remarkably similar to ours, where the contrast between the the professionals reading of the young man as a project and his parent's love and embracing of his uniqueness was very moving.

In all the reports written about Steven from the Unit, there is no sense that he is a human being. With human rights. With feelings. With memories. With attachments. With likes and dislikes. The reports present him as a problem to be fixed. He is an exhibit to be analysed. He is a project to be worked on. And the view of the type of life the professionals believed he should be living bore no resemblance to the type of life Steven was living, and wanted to live.

BY the autumn 2010, I was meeting the professionals in neutral places. It may sound pretentious but I couldn't meet them in our home, our family space. Not just because they were intent on destroying that space, our family but because the place started to feel contaminated. I wanted the home that Steven came back to to feel like a normal family home, not the laboratory they wanted to turn it into. Before, they arrived, I would clean the place from top to bottom so it passed muster. And after they left, I'd clean it all over again to rid the place of its stench. At the same time, I found it hard to attend meetings at the Civic Centre. I was usually outnumbered by about 8 to 1. I'm a reasonably confident sort of chap but I felt terribly intimidated and became tongue tied.

One meeting withe just me and the social worker took place in Costas (just before it became the council's non building based drop in facility). It was awkward. We were both totally inauthentic. She asked me a lot about my counselling work and said she would love to do that sort of work herself. And then we got onto the point of the meeting - the tenders had started to roll in for the long term placements for Steven. She wanted me to go and view some. I wanted to do nothing of the sort.

I'm sure it was probably a slip of the tongue but at one point she said: "Steven may like it there. We have to test if It can adapt in a more structured environment".

"Who's It?" I replied.

She blushed and apologised and muttered something about needing to keep a professional distance. I wanted to bring back my lemon slice and suggested that she could maintain professional distance without turning the person into an "It".

She paid the bill. I never went to see any of the "potential providers". And I think that was our last coffee meeting.

Steven likes this video. I don't but it resonated throughout the year whenever I read one of their reports:


  1. That judgement is the most terrifying thing I have ever read. In order to pursue the very tenuous goal of "independence" this young man has to be put through a regime that is pretty well guaranteed to fail. How can this go on happening?

  2. Hi Mark, Back from my distant galaxies! I've been thinking more and more about these behavioural approaches, and how they relate to human rights. Positive behaviour support (PBS) appears to have grown out of an approach called Applied Behaviour Analysis (ABA), and been an attempt to get away from some appalling human rights violations associated with that approach. ABA was developed by a guy called Ivar Lovaas to 'cure' autism, and also homosexuality, using various forms of conditioning - based on behavioural theories. Lovaas' approaches were associated with the use of 'aversives', such as electric shocks, to condition people out of 'autistic behaviour'. The approach taken by the appalling school (since investigated by the police and criticised by the UN Special Rapporteur on torture) in this story are based on behaviourism:

    Michelle Dawson, who is herself autistic, wrote a really important critical essay called the Misbehaviour of Behaviourists, about these behavioural approaches:

    'Positive behaviour support' seems to have been developed to take behaviourism away from the use of aversive towards a more 'ethical' approach. I recently read a paper which argued that PSB - unlike Lovaas' approach - complied with the UN Convention on the Rights of Persons with Disabilities:

    As far as I am aware, nobody in the UK is still using aversive like shock therapy (although I have heard of people using aversives like leaving children alone, or taking treasured items off them). But although some advocates of PSB, like the authors of the CRPD paper I just linked to do claim that the starting point must be working with the person in their chosen environment, to further their chosen goals, it seems as if this isn't the way it is being used.

    I'd be interested to know what happens to ML. It's striking (and depressing) to see a judgment endorsing detention in the kinds of unit everybody else is busy trying to close down, in the name of 'independent living', a goal which was always about people having choice and control over where they lived and how they were supported... I think it's about time the disability charities started intervening in these cases to inject a disability rights perspective.

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