Neurodiversity, institutions, incapacity

I've mentioned Amanda Baggs, author of Ballast Existenz, a few times on this blog.  For those of you who haven't heard of her she's probably best known for her YouTube film In My Language, which went viral in 2007 and brought Baggs - and the wider Neurodiversity movement - to the attention of the mainstream. If you haven't heard of the Neurodiversity movement, and you have any kind of interest in mental health, then I can't recommend enough that you read about it.  There's a pretty good Wikipedia page (and you could also look up the associated Mad Pride and Autism Rights movements).  Jim Sinclair has written a history of the movement here; a seminal moment in the movement was Sinclair's delivery of a presentation called 'Don't Mourn for Us', a paper particularly directed at parents grieving their children's autism and hoping for a cure, at the International Conference on Autism.  The diagnostic criteria for Neurotypical Disorder from the DSM (diabolic and statistical manual) are a good example of the powerful yet playful activist techniques of the movement, inverting and calling into question dominant ways of thinking about 'mental disorder'.  Although the movement finds many supporters among carers and professionals, it is also positioned in many respects in opposition to the orthodoxies of professionals and NGO's purporting to represent the interests of autistic and other groups.  Indeed, their celebration of a positive 'neurodiverse' identity sparks such high tensions that some counter-movements blog have sprung up, but they're so vile in content that I can't bring myself to link to them here.

The anti-cure and anti-tragedy tenor of the autism rights movement situates it culturally quite close to the early gay rights movement in certain respects.  It certainly has strong resonance with developments in Crip Theory, although a lot of mainstream academic disability rights work has yet to address the specific concerns of the Neurodiversity movement.  Some activists within the movement had links to or drew inspiration from figures like the late, great, disability rights lawyer and activist Harriet McBryde Johnson, well known in her home town for picketing fund-raising Telethons that played on the 'tragedy' of Muscular Dystrophy, which McBryde Johnson had.  (As a topical aside, pertinent to the recent furore over the Journal of Medical Ethics' decision to publish a paper 'After-birth abortion: Why should the baby live?', McBryde Johnson wrote a frank and fascinating account of meeting and debating with Peter Singer, an Australian philosopher who has argued for infanticide and "euthanasia" of disabled people who do not satisfy Singers' criteria of what it is to be a person.  But I digress.)  In no small part the movement's growth and prominence can be related to the new possibilities for activism for historically marginalised groups offered by the internet.  As disability rights activists over here in the UK have shown, even if you can't get out the house to march and picket because you are sick, because of poverty, because of transport systems not designed to cope with disabled people's needs, you can still rock the boat by writing, by testifying.

Baggs' blog has had a very significant impact on my own life.  I first heard about her in 2007, around the time I'd decided to pursue a career in social care, and I began following her blog.  Reading Baggs' blog and working in social care turned out to be challenging, to say the least.  I remember working in a service for around ten adults in their late twenties or early thirties with "very severe autism".  None of the adults there were able to speak (and I doubt if significant efforts were being made to see if they could communicate by other means), and all were subject to round the clock one-to-one supervision, two or three to one if they went out.  Every door in that service had a lock, from the cupboards to the toilets, and the staff held the key or the keycode.  One man in the service was fitted with a 'harness' (effectively a piece of wide flat tape around his waist, with a lanyard at the end for staff to put around their wrist), and despite repeated criticisms of this in CSCI reports (I later found) and by his social worker, the reality was that he was wearing it most of the times that I worked there.  Staff in the service had developed a de facto system of seclusion for when they were tired (from 12.5hr shifts), or the residents "too agitated".  They would sit against their bedroom doors, their feet braced across the corridor, so the person in the room could have "time out" (see this on euphemisms for seclusion) and they could have a rest, read a magazine, chat with the other staff.  No 'seclusion rooms' for inspectors to see; no records for social workers to read (not that I saw many signs of active social work scrutiny there).  'Outings' usually involved driving round the country lanes in a minibus, a 'trip to McDonalds' involved eating drive-through food in the car park without getting out of the minibus, but occasionally efforts would be made to take people to the supermarket, for a walk.  Some of the staff were kind and enthusiastic and tried to break up the monotony, the oppressiveness, of the regime; others were not.

I never saw anything that paralleled the Panorama film of Winterbourne View, but it wouldn't entirely have surprised me if things like that had occurred among some of the staff.  The service users, understandably in a care environment that could have been a ring of Dante's Inferno, were often agitated, often quite violent.  Risperidone and other sedating meds were handed out for 'anxiety' (read: aggression towards staff).  Quite a macho attitude developed among staff to deal with this, staff sickness and absence due to injury was common, hence the frequent use of agency staff like me.  Staff who struggled were seen as not tough enough to cope, rather than struggling with the very outlook, ethos and structure of the service itself.  The service eventually shut down amid a cloud of allegations in the local press, nothing was ever made public.  I had complained about the service to my agency, and they stopped sending me there.  I don't know if they passed on the allegations I made to them; I'm not sure it would be in the interests of an agency to whistleblow about their customers.  I hadn't in fact heard of CSCI until after I left, and I do wonder how many care staff know how to whistleblow even if they are able to identify as abusive practices that might be sanctioned and encouraged by managers.  As a care worker at that time I had no idea what made that service legally problematic, had no idea what a 'safeguarding alert' was, no idea about regulation and whistleblowing.  As staff we took our cue from management as "experts" in care, and management clearly regarded this as a normal and appropriate way to "care" for adults with severe autism.  In my gut I just knew something wasn't right about that service, but I had no external point of reference to help me formulate that claim.  Except Baggs' blog.  Because Baggs' blog helped me to realise that we were failing to treat service users as people, people who might feel just like anybody else would if they were subject to constant control, sanction and coercive interventions with body and mind from an ever-changing cast of authority figures they had no control over.  The only way to make sense of working in a service like that is to imagine the people it 'serves' are not like you, would not feel like you would if you were treated like them.  The power of Baggs' blog is in challenging this assumption.

Most people who have worked in social care for some time could tell you horror stories about services like this.  Services like this are, in fact, what I thought the deprivation of liberty safeguards were set up to deal with.  Services like this are what I think of when people talk about care in the community and supported living being as if they've solved all the historical problems of institutionalisation and oppressive regimes in the long-stay hospitals.  But in a post on institutions Baggs' makes a really important point, that we shouldn't take the view that only services that approximate Winterbourne View pose significant problems from the perspective of institutionalisation and autonomy:

I’m looking at a webpage with links to reports about human rights abuses in psychiatry. I could read these reports, but they’d just make me angry. Not the kind of productive anger that makes it easier to write stuff and change things, but the kind of futile undirected rage that would tear me up inside, make me kick doors and yell at my friends. I already know about these things, and don’t need to be reminded, but what we’re reminded of in the first place is selective. There are tremendous human rights abuses going on in certain institutions, yes, and they need to be fixed as soon as possible. But the nature of these reports worries me. They make it look like if you just cleaned up the walls, gave the inmates food and medical care, and stopped beating people, that these places would be acceptable. While these are basic human needs, meeting these needs does not mean freedom. It doesn’t even mean freedom from abuse.

Institution survivors are all too willing, sometimes, to share what seem like the worst of our horror stories. I don’t know about everyone else, but I do it because those abuses are the most tangible. It is easier to write about the mark of drugs and electroshock on the brain or restraints and beatings on the rest of the body than it is to write about the mark of the institutional environment and psychotherapeutic control on the mind. The former are solid and quantifiable; the latter are elusive, insubstantial, and sometimes more terrifying and longer-lasting.

I have a recurring nightmare. I am in a beautiful building with a hushed, playful atmosphere. I have been there as long as I can remember. Everything I could possibly need is there. There are no locks on the doors. People follow me everywhere, but just out of sight, to give me the illusion of freedom. They want only the best for me. I can go outside and play in the woods, and I climb trees. And they treat me like a child. Everything is controlled perfectly. Nothing seems to be wrong, but nothing seems to be really right, either. Everyone is very sweet and very kind and very nice and very forgiving, but there is no freedom. Anywhere. This makes the apparent happiness of the place empty, shallow, and false. That, to me, is the essence of the intangible horrors I fear. Only when I wake up from this nightmare do I realize it’s a nightmare, and that in turn makes it all the more frightening.

Baggs wrote a more recent post on 'What makes institutions bad?' echoing similar themes.

When I started this post I'd actually meant to draw readers' attention to a more recent post Baggs wrote about guardianship, which raises all kinds of interesting questions about capacity, substitute decisions, trust and representation.  I was going to write about several points Baggs made about guardianship and discuss them in relation to the Mental Capacity Act 2005, and discuss an earlier post where she talks about the effects of one's autonomy being ignored on one's sense of self.  But I think Baggs' posts speak for themselves really, and don't need me to explain the points she makes so eloquently herself.  I find her work, illustrated with fine detail and concrete examples, with the authority of first person experience, a far more powerful problematisation of 'substituted decision-making' mechanisms like the Mental Capacity Act 2005 than the rhetorical and abstract arguments often made in lawyerly writings on disability rights.  Her work has a profoundly unsettling effect for those working with institutional forms of care, with particular ideas of mental disorder and incapacity.