W(h)ither Winterbourne?

W(h)ither Winterbourne?

I first heard the news of Bill Mumford’s resignation from the Winterbourne View Joint Improvement Programme (http://www.macintyrecharity.org/news/details/?/Personal%20statement%20from%20Bill%20Mumford/2403/ ) in Birmingham New Street station – with police called into a second MacIntyre residential school concerning a ‘safeguarding incident’ brought to light by a whistleblower. Sinking feeling replaced by numbness for a while, then the brain starting to drift into ‘What next?’ thoughts as I got nearer to home. Then I was brought up short by this tweet from @sarasiobhan.

I’m ashamed to say that this is exactly what I was doing, and I was quite rightly jolted into keeping my trap shut and letting a night’s sleep do its work. So why this blogpost, with this title? Well, I do have my views (as I’m sure everyone does) on what next, but I don’t want to talk about the tactics, the structure, the exact arrangement of the deckchairs – it’s not right, right now, to do that. Before the rush to ‘fix’ the Winterbourne View programme (‘fix’ being a deliberately ambiguous term) I want to make three, connected pleas.

First. Whatever happens next, the process of who decides what happens next needs to be radically different. People with learning disabilities need to be at the heart of decision-making power in whatever comes next, together with allies who those people trust. This will certainly include families and it is also likely to include others (as @GeorgeJulian has pointed out, the assumption that you can’t be a committed ally of people with learning disabilities unless you have a family connection is just another form of devaluation, a variant of the “He’s got a face only a mother could love” joke/slight). But the power rests here – not as a few faces round a table of 20 or more, but as the absolute centre of decision-making. All (most? some?) of the professional expertise and nous currently round the Winterbourne View table will still be needed, but their function will be to help people with learning disabilities implement what they want to happen.

Second. In my reaction both to the news of Bill Mumford’s resignation and in my reaction to Sara’s tweet, not for the first time I felt a sense of shame. And in conversations (both face-to-face and in twitterland) I get hints of that too. I find this difficult to talk and write about, the extent to which I am a complicit cog in a system that does what it does to people with learning disabilities and their families. And also seeing the @justiceforLB and now the @justiceforNico campaigns (and of course @MarkNeary’s #107days blog) uncover depths of what can only be described as institutional malice, wondering whether my naivety about this is somewhat self-serving or self-protective. And I’m guessing I’m not unusual – whether highly committed ‘good’ people or not, how many people working with people with learning disabilities have a nagging sense of shame about aspects of the work they do?

What can a person do with such a sense of shame about what they do with their working lives? I’m no psychoanalyst, but I guess you can reassure yourself that you’re doing the best job you can in the circumstances and things would be worse if you weren’t there, you can try and pretend you don’t feel any shame at all, or maybe you can turn that shame into anger at the people who you think are making you feel like that. Or maybe you can be upfront about it and start having honest conversations with people on the receiving end of what you’ve done (or not done) – engage with the disappointment, hurt and righteous rage of people with learning disabilities, families and allies. The last suggestion in @neilmcrowther ‘s excellent blogpost We will only close institutions by opening up the world ( http://www.ndti.org.uk/blog/guest-blog-by-neil-crowther-independent-consultant ) was for a Truth and Reconciliation Commission where historic, current and systematic abuses of power against people with learning disabilities can be openly recognised as a vital step for achieving lasting equality.

Third. Partly as a result of frustrations with the Winterbourne View programme a number of ideas/plans/visions for alternatives have been emerging. I don’t want to debate the merits or otherwise of these here, but I do want the make the observation that they are all focused on trying to ‘fix’ (that word again) various bits of the service systems already in place for people with learning disabilities. Linked to my first and second pleas, and to Neil’s blogpost, my third plea is that people with learning disabilities, their families and allies, are in charge of starting from a different premise. If you were starting with a blank sheet of paper, what would you really want your life to be like? What would you need to help you live the life you want? The financial and service systems within which people with learning disabilities and families are ‘supported’ (or are completely excluded from) are forbidding in their complexity, and changing bits of the system is like chucking a hippo on a bouncy castle (all the other bits fall over when you do this). This can be a recipe for a gallic shrug and shuffling off for a defeatist Gauloise, or for blinkered tinkering with a particular bit without reference of what effect it has elsewhere. But with clarity about what people with learning disabilities really want for themselves and those close to them, at least there will be a sense of what to aim for. What will that look like? It’s not for me to say…

And last, let's remember the young people in those MacIntyre residential schools and their family members who placed their trust in the schools. Please let's not say some variant of "Every crisis is an opportunity". For those people at the heart of this - it isn't.