Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Wednesday, 8 August 2012

Winterbourne

On Friday, the last member of staff from Winterbourne View hospital in Bristol charged with ill-treatment or neglect under the Mental Health Act 1983 (MHA) pleaded guilty.  I had planned to go to court to watch the trial, but  in the event the victims and their families were saved the additional pain of the evidence being picked through and watching efforts to defend the indefensible.  This last defendant, Michael Ezenagu, is shown in the Panorama footage twisting a patient's wrists and fingers behind her back as she sits on the sofa, not threatening herself or anyone. Later on he says 'she’s a nice girl you know, but when she’s in a bad mood the only language she understands is force.'  And until last Friday, he was going to plead not guilty to ill-treatment.  It is hard to fathom what, precisely, he thought this footage showed, even now, even after over fifteen months to think about it.

With no trial, the reports on Winterbourne View that had been delayed so as not to prejudice a jury came tumbling out.  Mencap and the Challenging Behaviour Foundation produced a report, Out of Sight, which drew heavily from the experiences of families of the Winterbourne abuse victims and those in similar situations.  Although it wasn't written in connection with Winterbourne View, it's worth connecting their evidence of an absence of alternative services to this report by the National Development Team for Inclusion on why these services still exist, despite their huge cost, poor outcomes, and being discredited by policymakers, academics and campaigners.  The Care Quality Commission produced their internal management review of regulatory involvement and failings in Winterbourne View - it appears, like their recent report on the learning disability services inspection program, to have been written in regulatorese.  Much ink has been spilled about the CQC's new 'whisper softly but carry a big stick' approach; the Out of Sight report complains about the linguistic shift that came with the creation of the CQC:

This is not helped by the bland words used in its reports, such as ‘non-compliance’ and ‘failing to meet essential standards’, which betray the seriousness of what this could mean. Hidden behind these words are stories of abuse, neglect and appalling care – of loved family members whose lives have been irrevocably damaged.
Despite this, you can feel the despair and frustration of whistleblowers refracted through the CQC report.  The NHS has produced a report on the commissioning side of things, with some interesting reflections on DoLS and the MHA ('on the limited evidence available, it appeared that no decision to detain an individual had been overturned or challenged by a First Tier Tribunal (Mental Health)').  And, of course, the long awaited Serious Case Review was published - a fantastically careful, comprehensive (170 pages!) and deeply considered overview of the many, many, things that went wrong at Winterbourne View - written by Margaret Flynn and Vic Citarella at CPEA.  The report is well worth reading in full, although parts of it - especially the parts recounting the experiences of the victim, their families and what happened to them afterwards - are harrowing.  There have also been statements from the police, the College of Social Work, ADASS, the Royal College of PsychiatristsCastlebeck themselves.  Robert Nisbet, from East Midlands Safeguarding Board, has been looking into the responses of professional associations to the Winterbourne View SCR and has kindly allowed me to share this document.  It's fascinating to observe which professional organisations have really taken 'ownership' of what happened at Winterbourne View, social work organisations in particular are engaging in a great deal of soul searching and expressing anger at failings.  Meanwhile other organisations (doctors, OT, and nursing organisations) have made no especial response yet to the SCR, indeed some organisations do not mention Winterbourne at all anywhere on their websites.  Most (non-social work) responses are fairly anodyne, there doesn't seem to be much appreciation of the role of their professional members in all this.  I can't see anything on the Department of Health website, but presumably they've had sight of the SCR before now and plan to issue some response to its recommendations to them at some point.  At some future point I'll summarise the various aspects of the SCR that are connected to the MHA, the MCA and the DoLS - there are many, and some quite shocking (albeit not that surprising) findings on abuse, or absence, of legal process.

And, of course, there have been news stories and blogs - this being one of many.  The Not So Big Society blog has a really good summary of the report by Ermintrude, and a piece by Zarathustra on the profit angle.  Martin Coyle from Action for Advocacy has written about the low priority important care issues are given in the news agenda.  Two pieces I found especially moving were by carers contemplating what this means for a system their loved ones will use in the future - mydaftlife and Nicky Clark.  For a piece of research I hope to write up when I've got my thesis out the way, I interviewed family carers of adults with learning disabilities about various issues around autonomy and independence.  One of the recurring themes was a lack of faith that their loved ones would be safe in care services or otherwise supported by the state.  Carers cited Winterbourne View, the Cornwall scandal - much of which was in local supported living services, not just out of county assessment treatment centres.  They also cited brutal murders of those being 'supported' in the community like Steven Hoskin.  They felt their concerns received little recognition from those trying to push a particular service, they were perceived as obstructive, difficult, finding it hard to 'let go'.  In fact, I've read academic papers accusing carers of using 'extreme' examples as 'excuses' for being too 'overprotective'; apparently failing to recognise that these examples may be extreme, but they're not as rare as you would hope.  I wonder if the Winterbourne carers experienced this?  We shouldn't forget that Hillingdon had planned to send Steven Neary to one of these hospitals; had it not been for Mark Neary being a 'difficult carer' perhaps Steven would be there now.  Mark Neary's own extremely moving post on Winterbourne  asks what will happen when he is dead and gone.  In my interviews one of the questions I asked parent carers was 'what are you hopes for the future for your son/daughter?' - naively imagining that people would recount aspirations like getting a job or a boyfriend or girlfriend.  More than one carer tearfully said that they hoped they outlived their children, because without them they had no faith that the 'system' would protect them.  They called it the 'parents prayer'.  What a fucking* awful world we live in, that that's their prayer.  That's what services like Winterbourne View mean.  That's what failings of support like those that let down Steven Hoskin mean.  That's what CQC's washed out, diluted, approach to regulation means.  That's what overstretched social work portfolios, lacklustre commissioning, minimum wage high turnover staff, cuts and profits, shabby safeguards, absent advocacy, and shoulder-shrugging-safeguarding means.  And that's also, very likely, the meaning of 'resistant' carers.

When Mencap and the Challenging Behaviour Foundation argue that there are very likely many more Winterbournes out there, undetected, I don't think they are exaggerating.  Before and after Winterbourne View I've heard many stories of institutional abuses, not all - I should add - in assessment and treatment centres.  In fact, many abuses I've read about, abusive services I've worked in myself, were 'local' residential schools, care homes or supported living settings.  Not all were run by 'nasty' for-profit providers either.  Of course we shouldn't be warehousing people in business parks, of course we shouldn't be detaining people who could have their own tenancy with support, or live in a care home catering to their needs.  Of course not.  But the danger of institutional abuse lurks in those services we idealise too.

One of the posts I've been meaning to write, and will at some point get around to, is the role of 'incapacity' in all of this.  Not incapacity writ in law, necessarily, but the wider, less clearly articulated, presumption that a person is incapable, that their rights are different, a discursive - as well as legal - mechanism which strips them of the autonomy and credibility they need to protect themselves.  Winterbourne patients were not believed by the police and carers; in the Budock inquiry 'disability' was given as a reason not to interview by the police,  or take their testimony seriously.  They were treated as objects to be moved around between services, regardless of their wishes and fears.  Indeed, how else, but through the coercive machinery of the MHA and 'incapacity' could Winterbourne patients be dumped and contained in those services?  How very convenient for those that profit from their detention, for commissioner's that can wash their hands of them, and for those that abuse their trapped and discredited victims.  Incapacity also normalises violent interventions through legitimising, with very little scrutiny, restraint.  Recall how many times in the Panorama program staff documented an act of violence in the language of 'proportionate' restraint, their training giving them all the linguistic cover they needed.  In the Winterbourne SCR the police were called 9 times regarding staff on patient assaults; the only time they prosecuted was when it wasn't presented as restraint.  Call it restraint, allege that the patient was aggressive, and staff - whose testimony is almost automatically regarded as more weighty than the 'incapable' - are immune.  Unlike systems which enable disabled people to choose their own supporters, the MCA system places power in the hands of any old person who claims a connection with your welfare and decides that you lack capacity, regardless of your feelings towards them, regardless of whether you trust them.  I am not denying that 'incapacity' is also a tool that is used for purposes of protection, but we must acknowledge that incapacity - formal, legal incapacity as well as the perception of a person that it inspires - bears significant risks.  Incapacity and the perceptions associated with it strip victims of institutional abuse of the protections they most need: the ability to communicate with others on the outside, the ability to be believed by them, and the ability to get away.  Incapacity is closely connected with institutionalisation, a connection that campaigners like the Mental Disability Advocacy Centre are working to unpick through strategic litigation in cases like Stanev v Bulgaria and DD v Lithuania (e.g. see this article).  Autism rights campaigner Amanda Baggs has written extensively about institutionalisation, about 'guardians', and in a recent piece on 'What Makes Institutions Bad?' she writes:
The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.
And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.


*Sorry.

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