Sara Ryan in her blog today (http://mydaftlife.wordpress.com/2014/11/18/at-least-two-rooms-without-a-view/ ) has highlighted the lack of (and somewhat misdirected) media attention concerning two young women with learning disabilities experiencing horrific conditions at the hands of ‘health’ services. Lisa lived for 9 years in solitary confinement, in a locked room at the end of a male ward in a specialist learning disability inpatient service. All interactions with her were through a slot the size of a letterbox including her food being passed to her and her hair being brushed, with a beanbag for her to sleep on (http://www.cqc.org.uk/sites/default/files/2014%2006%2017%20Three%20Lives%20report%20FINAL.pdf). Stephanie was admitted to a specialist learning disability unit at the age of 18, where she lived in solitary confinement in a padded room with skylight windows for almost 7 years, during which time she gained over 10 stone. Lisa eventually moved out; Stephanie died in the unit.
In this post I want to discuss Donna Reeve’s work applying the concept of ‘Homo Sacer’, developed by the philosopher Giorgio Agamben, to the lives (and deaths) of disabled people. I saw Donna do a typically excellent talk on this issue at the Lancaster Disability Studies Conference a couple of months ago, and it’s part of a strand of her work going back at least as far as this book chapter (http://donnareeve.co.uk/wp-content/uploads/2014/03/ReeveChapter2009.pdf ). Basically, here I’m going to put together a series of quotes from Donna’s chapter (as she explains the essential aspects of the concept for our purposes far better than I could) and ask you to consider the extent to which this applies to the position of Lisa and Stephanie, and Connor Sparrowhawk (see @sarasiobhan and @justiceforLB), and Nico Reed (see @justiceforNico), and Steven Neary (see @MarkNeary1), and so many others.
“In Homo Sacer (1998) Agamben explores the nature of sovereign power and production of bare life, describing homo sacer as someone whose ‘entire existence is reduced to a bare life stripped of every right by virtue of the fact that anyone can kill him without committing homicide’ (Agamben, 1998: 183). Homo sacer can be considered to be an outlaw or bandit who lives in a state of exception; someone who is not simply outside the law and indifferent to it, but who has instead been abandoned by the law.”
“Agamben draws on an obscure figure of archaic Roman law, homo sacer, to illustrate the essential part played by bare life within modern politics. Homo sacer is someone ‘who may be killed and yet not sacrificed’ (Agamben, 1998: 8, italics in original); thus the killing of homo sacer is not considered to be homicide. In addition: ‘He who has been banned is not, in fact, simply set outside the law and made indifferent to it but rather abandoned by it, that is, exposed and threatened on the threshold in which life and law, outside and inside, become indistinguishable.’ (Agamben, 1998: 28, italics in original). This zone of indistinction represents a state of exception in which homo sacer is bare life, zoē, stripped of political rights and located outside the polis (city); in other words homo sacer has biological life, but that life has no political significance.”
“As well as the relationship between homo sacer and zones of exception, Agamben shows that there is a reciprocal relationship between the sovereign and homo sacer: ‘[T]he sovereign is the one with respect to whom all men are potentially homines sacri, and homo sacer is the one with respect to whom all men act as sovereigns.’ (Agamben, 1998: 84).”
When listening to Donna’s talk, I know I wasn’t the only one to be struck by the horrifying and direct applicability of ‘homo sacer’ to the position of people with learning disabilities within specialist inpatient units, and also to the position that families are forced into when trying to support the person they love or to find some kind of justice when the person they love has died in services ostensibly existing to help. The widespread misuse of legislation and policy designed to secure people some legal protection (Mental Capacity Act? Best Interests? Deprivation of Liberty Safeguards?). The (still not understandable to me) determination of some local authority personnel to get people with learning disabilities into units far away from their families, who are told not to visit for a matter of months in case it upsets the person. The routine use of anti-psychotic medication, restraint, seclusion and worse in many of these places. The wall of denial, obfuscation, resistance, spite, vengeance and veiled threats of reprisal that can come down on the heads of family members who try and find the truth when their loved ones are mistreated or die in these services. The fact that people with learning disabilities can and do die in these services and no-one responsible is called to account.
Finding out the scale of this mistreatment of people with learning disabilities is obviously vital. But even this happening to just one person is enough to make it clear what the position of people with learning disabilities really is in our society. I’m not a person with learning disabilities and I’m not a parent of a person with learning disabilities so I can’t really imagine what the impact is when people hear about Lisa, or Stephanie, or Connor, or Nico, or Steven. From reading what families write, I wonder if these stories (what a crap and inadequate word, but I can’t think of a better one) are interpreted partly as threat (this can happen – this can happen to you), with many families saying how hard it is to challenge what’s happening because they live in fear of services exacting reprisals on them and the person they love. This is the message, the state of constant insecurity, that many people with learning disabilities and families live with day to day – even when things are going well, in the blink of an eye (a change of staff member, a seemingly arbitrary cutting of budget or change of service) everything can change and the person and their family are at the mercy of whatever new regime results.
Is this post somewhat melodramatic and overblown? Maybe, but this is the reality that people with learning disabilities and families can experience. When these things can happen, in highly expensive services, overseen and approved by a range of ‘expert’ professionals (all with their professional codes of ethics and requirements for continuously updating their knowledge and demonstrating their competence), it’s not surprising that statements from professional bodies and services (including large charities who are substantial providers of services) are treated with a degree of mistrust.
Obviously, a change of legal status is a vital part of transforming the status of people with learning disabilities and their families from homo sacer to citizens with the same rights and legal protections (and societal expectations of decency and unacceptability) as everyone else. That is why progress on the LB Bill (https://lbbill.wordpress.com/ ) is so necessary – and the fact that the LB Bill is necessary for me illustrates the homo sacer legal status of people with learning disabilities.
But as Lucy Series also points out in an excellent blogpost I’ve just seen (http://thesmallplaces.wordpress.com/2014/11/19/a-rotten-culture/ ), the law on its own cannot address the toxic cultures that exist in some services which act to undermine any legal rights that people with learning disabilities and their families have. I understand little about management theory and practice about effective service cultures (within the NHS or in other places), but it does seem to emphasise positivity: if you treat staff well, work together with people using the service to improve your service, are open and honest about failures, and foster cultures without bullying or blame, then you’re more likely to get a service culture that works well for both staff and most importantly for the people using it.
I find this way of thinking immensely attractive. My problem with it is that it seems ill-equipped for dealing with toxic, malign service cultures, which clearly can and do exist when it comes to people with learning disabilities (but is not restricted to people with learning disabilities). Like Lucy, I’m at a loss to account for these malign cultures. Is it a collective arrogance? Is it a mask for deep insecurity? Is it a result of collective burnout (with its components of emotional exhaustion, social distancing and a lack of personal accomplishment)? While I’m wary of the psychologising tendency to invent a pathological construct, invent a measure of it and hey presto, X% of the population have blibbleblobbleopathy, do we need to look at ideas like workplace sociopathy? Whatever helps us to understand these cultures, for me changing them will require different tools to positive management philosophies, or models of ‘influence’.
We also need to recognise that some people are attracted to positions where they can exercise absolute power over other people, and that English society as a whole is at best acquiescent in accepting the unacceptable when it comes to people with learning disabilities. As Donna Reeve says in her chapter, the ‘homo sacer’ concept can be seen as somewhat pessimistic – resistance to oppressive power is difficult when the source of that power is somewhat diffuse and difficult to grasp. For me, the LB Bill is a vital step in bringing people with learning disabilities from a status of ‘home sacer’ to citizenship. But people with learning disabilities, their families and allies need to be in ultimate and real charge of the money, policy, commissioning and services for toxic cultures of ‘support’ to be transformed.
Agamben, G. (1998) Homo Sacer: Sovereign Power and Bare Life, trans. D. Heller-Roazen, Stanford, CA: Stanford University Press.
Reeve, D. (2009) 'Biopolitics and bare life: Does the impaired body provide contemporary examples of homo sacer?' in K. Kristiansen, S. Vehmas and T. Shakespeare (eds) Arguing about Disability: Philosophical Perspectives, London: Routledge, pp. 203-217.