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.
References
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.
Thanks Chris - Donna's work really is excellent.
ReplyDeleteWhat happened in these situations brought to mind what is happening overseas - for example MDAC's caged beds campaign, and the Judge Rotenberg Center in the USA (named after a judge because he stopped licensing authorities closing it down, highlighting the complicity of law in these atrocities).
I think you are right to highlight staff pressures though. I worked in some truly godawful learning disability and autism services and staff were so badly supported and treated. Seclusion, restraint and sedation were used routinely (although, nothing on this scale) because the building was insecure, because these guys didn't like living together and so would frequently lash out, because there were no safe spaces to hang out and because there weren't enough staff and sufficient staff training to do a decent job. Eventually the place got shut down. When I worked there I hadn't heard of CSCI so I reported my concerns to the manager of the service (who turned out to be the sibling of one of the worst support staff), and was made to feel extremely isolated by the remaining staff. Then the agency stopped sending me there. Staff often don't have the knowledge, tools, confidence or security to raise concerns. Their own precarity is a factor here, although I'm not sure the same could be said for more senior professionals.
Whilst I agree that it's not especially helpful to pathologise these actions, I do think that the experiments of Milgram and Zimbardo can help to explain what goes on in these toxic cultures.
Another factor is that there are always a proportion of people who will take the opportunity to abuse their power over a group unable to effectively speak up or be believed. Such abuse of power also occurs in settings looking after young children or people with dementia. The ability 'to get away with it' plays a part.
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