Connor Sparrowhawk: the erosion of accountability and the administrative grotesque #JusticeforLB

Social Abjection

reblogged from a guest post i did for justiceforlb.org @justiceforlb, with thanks to Dr George Julian for formatting and editing, and Sara Ryan for feedback.

Connor Sparrowhawk, the erosion of accountability and the administrative grotesque

We believe that everyone has the right to be unequal (Thatcher, 1975).

For me, it’s not a question of saying the NHS is ‘safe in my hands’. Of course it will be. My family is so often in the hands of the NHS. And I want them to be safe there. Tony Blair once explained his priority in three words: education, education, education. I can do it in three letters: NHS (Cameron, 2006).

Loving a disabled child
Put yourself for a moment into a mother’s shoes. You have a baby, you call him Connor, he is a beautiful, much loved and much wanted addition to your family. He has learning disabilities, and will later be…

View original post 2,827 more words

Researching Mad Pride: The Stigma and Violence of Knowledge Production

by Brigit McWade

Introducing myself

I am an early career researcher, whose work to date has led to my involvement in something called Mad Studies.

What is Mad Studies? As Lucy Costa, from The Empowerment Council in Toronto, Canada puts it: ‘Mad Studies is an emergent area of scholarship that aim to bring to the academic table the ‘experiences, history, culture, political organising, narratives, writings and most importantly, the PEOPLE who identify as: Mad; psychiatric survivors; consumers; service users; mentally ill; patients; neuro-diverse; inmates; disabled – to name a few of the “identity labels” our community may choose to use’ (Costa, 2014). The invocation of ‘madness’ is both a way of self-identifying and a mode of rejecting ‘mental illness’ or ‘disorder’ as labels that psychopathologise emotions, spirituality and neurodiversity.[i] It is against the reduction, stigmatization, and oppression that psychiatrisation[ii] entails: ‘Following other social movements including queer, black, and fat activism, madness talk and text invert the language of oppression reclaiming disparaged identities and restoring pride and dignity to difference’ (LeFrancois et al., 2013, p.10). Mad Studies is thus likened to other activist scholarship to emerge from identity-based social movements.

With the publication of Mad Matters: A Critical Reader in Canadian Mad Studies (LeFrançois, Menzies & Reaume) in 2013, Mad Studies is now gaining a higher profile internationally, bringing together mad-identified and mad-positive academics, activists, artists and people who aim to develop and strengthen what Peter Beresford has described as ‘democratic and feasible alternatives to support our understandings of and responses to madness and distress’ (Beresford in Menzies, LeFrançois, Reaume, 2013, p. ix). Whilst there is no singular agreed definition of mad studies, and no-one should claim to own it or attempt to police its borders, according to the introduction to Mad Matters, Mad studies is ‘a project of inquiry, knowledge production, and political action devoted to the critique and transcendence of psy-centred ways of thinking, behaving, relating, and being’ (LeFrancois et al., 2013, p. 13). It is an interdisciplinary field that centers Mad people and their culture, but works with allies, espousing critical pedagogical values to address relations of power in teaching, research and activism. As such it is ‘part of a wider revolutionary project dedicated to the radical restructuring of the mental health industry’ (LeFrancois et al., 2013, p. 17) that must remain relevant to those caught up in such complex webs of oppression and marginalization. There are many definitions of what Mad means within this movement, and this reflects its diversity. A particular definition I find most useful is that Mad Studies uses madness as a term “to celebrate a plurality of resistances and subversive acts against sanism” (Diamond in Le Francois et al, 2013).

Last week I went to London for a morning meeting with a group of psychiatric survivor researchers and allies to explore ways to support the furthering of mental health service user-led research in the UK through applying for funding and sharing skills and knowledge. We had a great conversation about what constitutes ‘user-led research’ and related terms in mental health such as ‘survivor’, ‘peer’ and ‘co-production’. We considered how research might be undertaken in ways that addresses rather than reproduces inequalities. It was a rich and thought-provoking discussion. Before catching the train home, I went along to a talk by Dr Mohammed Abouelleil Rashed entitled ‘Mad Pride, Cultural Identity and the Demand for Recognition’. This was given as part of a medical anthropology seminar series convened at UCL’s Institute for Advanced Studies. These two events, the meeting and the talk, were so contrasting it was a stark reminder of how far there is to go in attempting to shift psy-dominated narratives about mental health.

In the Leverhulme funded research project on Stigma we are working on, Imogen and I are thinking through what we term ‘the cultural and political economy of stigma’. This means rather than beginning with an idea of stigma as attached to an individual attribute, e.g. “mental illness”, we are examining stigma is an integral form of power and governance in advanced capitalist societies. My research for this project focuses on mental health, madness and stigma, and in a chapter for a forthcoming book entitled Madness, Violence and Power: A Radical Anthology,[iii] I am mapping how mental health anti-stigma campaigns that focus on “correcting” media representations by using the “facts of mental illness” reproduce psy discourse and power. Presenting a Mad Studies analysis, I argue that these psychiatric media-cultures are themselves stigmatising. My trip to London revealed another scene of representation that is complicit in securing psy power – academic research. 

The Seminar

The room fills up with what I assume to be postgrads and academic staff members. There are about 40 to 50 people present. Rashed is researching the Mad Pride movement through a selection of publications. His aim is to analyse Mad Pride discourse and consider the validity of their claims for recognition for Mad identities and culture, asking under what conditions the demands of Mad Pride might be meaningfully met. To begin his presentation, Rashed provides a potted history of Mad Pride. It is a well-rehearsed history – you start by asserting that the persecution of mad people and their resistance to it go back a long time. You might mention Margery Kempe, a voice-hearer from the 14th century. Then you jump forward to the 1960-70s and the rise of the mental/psychiatric patients’ liberation movements, citing Judi Chamberlin’s treatise On Our Own, before moving onto examples such as Survivors Speak Out and Survivor poetry in the 80s, and Mad Pride in the 90s. I’ve told this story myself. It may be well-rehearsed but it is not yet widely known. I’ve told it to audiences not familiar with mad politics or mad people’s history as way to disseminate vital and ongoing activism, to present a counter-narrative to the usual stories we get told about mental health.

After recounting this brief history, Rashed identifies four key elements of mad pride discourse and explaining how he will assess the validity of their claims, their moral and political justification, and what responses they might invoke. He then reflects on the politics of his project, asking ‘can I or should I write an analysis of Mad Pride?’ He notes disability studies work such as Mike Oliver’s that claim that research about disabled people should involve them; that we should not research about them but with them. Oliver’s argument is more than this. In Understanding Disability: From Theory to Practice, Oliver (2009) suggests that in order to address and change the relationship of power integral to social research, we need to overcome both the fetishisation of individual experience and tokenistic inclusion under the guise of participatory design. From his paper, it is not clear that Rashed has fully grasped the implications of this argument. Instead, Rashed argues that as his project is about how to recognise the demands of Mad Pride, he is well situated to undertake this research as he doesn’t belong to the movement. Recognition, he argues, requires an ‘Other’ – it is done between self and other. I have reservations about this claim to objectivity. In his identification as ‘Other’ Rashed draws a line in the sand; the Mad are here, the non-Mad over there and never the twain shall meet. The former is making demands; the latter, the experts and scientists, have the power to validate those demands. The control remains with the researcher and not the researched. My reservations are amplified as the disablist politics of invalidation reveal themselves quite forcefully during the post-talk discussion.

The Discussion

To begin the discussion a young, white, clean-cut, smartly-dressed professor sighs dramatically and declares that he is “so tired of these people” because They deny that there is any suffering involved in mental ill-health.  The audience press Rashed for more information. An anthropologist eagerly want to know what Mad Pride culture looks like ethnographically – has he been to any of their meetings to observe Them? It transpires that many of the audience are psychiatrists or psychologists. The (oversimplified) account of collectivist work asserting pride through identification and activism provided by Rashed is met with psychiatric tales of individuals. In this individualising rhetoric, the role of the psychiatrist and the psychiatric system are effaced and we are drawn to examine the mad person, the suffering person, the dangerous person. In the discussion, psy professionals parade a couple of case-histories of patients who killed themselves or killed someone else. They keep returning to the question of the violence committed by those diagnosed as “mentally ill”. They assert that Mad-identified people don’t address these issues. They proclaim that Mad folk deny that, as the young professor asserts, “these people do harm, real harm” and therefore they need to be sectioned under the Mental Health Act.

I make an intervention. I tell Rashed that I appreciate the ethos of his project is to consider how to meet demands for social justice, but I ask him to consider how his presentation might have been different if there were psychiatric survivors and mad-identified people in the room? Turning to the room, I comment that there has been a “They” invoked in the room but that representatives affiliated with Mad movement aren’t there to speak for themselves. Rashed set up a conversation to think about how “their” demands might be met, but he is the only person here to represent these demands. In the space opened up through “their” absence, the audience have returned the discussion to reductive stories about individuals being dangerous and causing harm. I correct them in their assertions that those involved in this activism don’t think about the question of violence. I cite work such as the Psychiatric Survivors Anti-Violence Framework (PDAC, 2015), Madness, Violence and Power (Daley, Costa & Beresford, forthcoming), and the Campaign to Support the Convention on the Rights of Persons with Disabilities Absolute Prohibition of Commitment and Forced Treatment. I explain that the kind of violences being addressed here are multiple, from the physical violence within hospitals and welfare regimes to structural violence and inequalities.

To a consideration of violence, we also need to add the symbolic violence reproduced by academic research. As Peter Beresford & Jasna Russo (2015) have argued it is not only clinical research that excludes people with lived experience from research. The social sciences and humanities frequently reproduce inequalities by positioning patients/users/survivors as outsiders, objects for interpretation and research ‘on’ rather than ‘with’. Indeed I witnessed how the discussion was shaped both by anthropological cultural reductionism and individualising psychiatric case-studies. These two disciplines share a history that is rooted in colonialism and eugenics. Methodologically, they observe and reproduce difference in ways that assert hierarchies of humans through classification. This made it impossible for them to hear or indeed recognise the demands of a rights movement rooted in a pride politics that refuses the terms of engagement.

On the train home from London, I reflect that perhaps the most important question is not how to validate the claims of Mad people, but rather to better understand the process and practices of invalidation which continually undermine their demands for justice.  If I were to study the audience at the research seminar, I would report that they are so caught up in their own culture of risk aversion and harm-reduction that they are unwilling to really listen to the knowledge produced by the Mad community, or indeed contemplate that psy knowledges and practices are themselves the historical cause of much of that violence and harm.

What is research and what is research for?

My experience of the discussion in London highlighted many of the issues I grapple with in my research about how I am positioned in relation to mental health activists, psychiatric survivors, and Mad-identified people (and these are only three of multiple identifications available). In 2015 I spoke at the transdisciplinary Changing Worlds conference. This conference was organised by postgraduate and early career researchers and its aims are to foster ‘an inclusive forum for exchange, discussion, and collaboration among artists, academics, activists, and other people concerned with science and technology issues.’ The conference papers touched regularly on questions concerning the relationship between academics and activists working towards social change.

My paper explored my involvement in the emerging field of activist based scholarship, Mad Studies, to think about the practicalities of such work. I drew on my experiences of attempting to make space in the academy for mad knowledges and practices, through a series of events (see for example Mad Studies and Neurodiversity: Exploring Connections) to think about how to negotiate different, hybrid identities in academic research, including the practice of organising inclusive research events (for more on this see Jen Slater’s great blog post. Mad Studies is about centering mad voices and mad politics within all aspects of knowledge production. This means undertaking research as an ally to the movement, not researching it as an outsider. It requires us to recognise that to research is a privilege; it is access to resources to do research, to be paid for research, to have the authority to produce knowledge about the world. As researchers we need to consider what and for whom our research is for.

There is an established history of academics, professionals, activists, artists, users and survivors working together in disability and mad politics. According to Mike Oliver (2009) researchers need to ‘put their knowledge and skills in the hands of the research subjects themselves. …[This] implies that we need to develop a language (or discourse) that does not continue to maintain the artificial distinction between researcher and researched’ (p. 115). An example of such alliance work is evident in Kathryn Church’s (1995) book Forbidden Narratives. Such linking of research and activism requires that we turn our attention to the ways in which academia as an institution and set of practices devalues such alliance work.

 

[i] There is no wholesale uptake of the identity of ‘Mad’, for many it is still too stigmatizing a term or it doesn’t accurately reflect their experiences. As you can see from the litany of identifications possible (and the list provided by Costa isn’t exhaustive) this movement is incredibly diverse.

[ii] For a discussion about the different meanings of ‘psychiatrization’ see: http://wellnesswordworks.com/what-does-psychiatrized-mean/

[iii] Edited by Andrea Daley, Lucy Costa and Peter Beresford, published by University of Toronto Press. Due late 2016.

The Sociology of Stigma: A Sociological Review Monograph

We are glad to share the news of a forthcoming Sociological Review Monograph to be edited by Imogen Tyler and Tom Slater, which, all being well, will be published early in 2018. it will include articles by Imogen Tyler, Tom Slater, Jenna Loyd, Anne Bonds, Lynne Friedli, Joanna Latimer, Brigit McWade, João Queirós, Virgilio Borges Pereira, Graham Scambler, Dayna Keene and Gergő Pulay.

Stigma is currently one of the most used but least developed of sociological concepts. This special issue aims to revitalise sociological debates about what stigma is, and the role of stigma in the formation and governance of contemporary societies. We anticipate that this special issue will have considerable appeal to readers of The Sociological Review, and hope it will make a defining contribution to the journal and the discipline.

Scholarship on stigma has been dominated by psychologists. This special issue will wrest stigma away from the individualism and a-historical frame of psychology, returning stigma to sociology through a focus on questions of history, power, capital, value, inequality, culture, ‘race’, disability and social governance.  Through theoretical innovation and detailed empirical case studies of stigma in a range of settings, this issue will be an an essential resource for graduate and postgraduate students, but will also engage policy makers and practitioners/activists, opening up new questions and avenues of research.

Erving Goffman’s Stigma: Notes on the Management of Spoiled Identity [1963] transformed understandings of the social function of stigma. Proceeding from a definition of stigma as ‘the situation of the individual who is disqualified from full social acceptance’ (1990: 9), Goffman explored what a burgeoning psychological literature on stigma might ‘yield for sociology’ (1990: 9). Fifty years after its publication, Goffman’s Stigma remains the most influential treatise on the social function of stigma. It has been pivotal in the development of practical initiatives designed to combat social stigma, for example in programmes designed to reduce the social stigma of conditions such as HIV and AIDS. Since Stigma was published, social and political movements, such as the LGBT and disability rights, have transformed public perceptions and understandings of what might have been considered “spoiled” or “deviant” bodies and behaviours. However, despite sometimes successful practical applications of Goffman’s work, it is striking how little sociological understandings of stigmatisation have developed within the intervening period. Further, it has been argued that Goffman’s interactionist approach to stigma has the effect of neutralizing the social and historical materials he draws upon (see Jameson, 1976). For example, Goffman wrote Stigma during a critical period the black civil rights movement in the US, but while he examines racial stigma, he doesn’t reflect on how social and political upheavals effected by movements for the equality of black humanity might trouble the stigma of “racialised interactions” or consider how stigma is a fundamentally racializing force (see Loyd and Bonds). Moreover, recent research has questioned the effectiveness and politics of (some) anti-stigma initiatives (see Haslam et. al. 2006, Pescosolido and Martin 2015)(see McWade). This troubling of normativity also speak to a longer series of theoretical debates in critical race studies feminist and queer theory, which variously argue against the limited terms of “inclusion” on offer from institutions, states, corporate agents and their mediating agencies. Within these alternative traditions of stigma thinking, there is a concern with reclaiming stigma ‘as a pivotal arena for the politics emanating from different traditions of the oppressed’ (Weheliye 2014, p. 2, see Tyler, McWade and Latimer)

This monograph develops out of the shared research interests of the two editors on the role of stigma in (re)producing social inequalities and injustices in the context of neoliberal capitalism. It aims to bring together sociological research on poverty, racism, disability, stigma and shame, with geographical perspectives on the activation of stigma at different scales (governmental, policy, media industries), recent scholarship on the stigma of place (see Slater, Queirós & Pereira, Keene and Pulay) and analyses of anti-stigma campaigns. In doing, it draws together articles from scholars writing from different global locations and perspectives, variously concerned with stigma as a mechanism of social disenfranchisement in numerous forms and on multiple scales. While the broader literature, particularly the social psychological literature, on stigma is vast in scope, what distinguishes this monograph is its specific focus on stigma as a mode of social governmentality. There have been attempts within social psychology to address the ‘decidedly individualistic focus’ (Link & Phelan, 2001: 366) of existing stigma research. However, this has been hampered by a limited understanding of ‘power’: where power is imagined primarily as a force exercised by individuals – ‘the aims of stigmatizers’ (2014: 24) – rather than conceptualised vis-à-vis the motives of, for example, class-interests, institutions and corporations within a broader unequal political economy of neoliberal capitalist accumulation. Hence, a specific aim of this monograph is to consider how stigma is activated in order to govern populations. This approach has been inspired by Loïc Wacquant’s argument that one of the major characteristics of neoliberalism is conditions of heightened stigmatization for minority subjects ‘in daily life as well as in public discourse’ (2008: 24–5). This argument is supported by research, for example John Hills and Peter Taylor-Gooby in the UK, have detailed a growing stigmatisation of poverty (Taylor-Gooby, 2013; Hills, 2015). Similarly, the ESRC-funded project, ‘Shame, social exclusion and the effectiveness of anti-poverty programmes: A Study of Seven Countries’ (2010-2012) details a marked shift from policies concerned with alleviating poverty shame, to forms of policy making designed to activate stigma in ways which ‘support the unequal distribution of resources in society’ (Walker, 2015, see Friedli below). This monograph seeks to further explicate and examine the role of stigma as as integral form of power and governance in advanced capitalist societies.

Working Titles of articles/chapters:

Neoliberal Stigma Power, Imogen Tyler

The Invention of the ‘Sink Estate’: Stigma and Symbolic Power in English Urban Regeneration, Tom Slater.

Where Do Black Lives Matter?: Race, Stigma, and Place in Milwaukee, Wisconsin,  Jenna M. Loyd & Anne Bonds.

Stigmatising the resistance: the role of psychology in state attacks on “refusal to work” Lynne Friedli

Repelling neoliberal world-making: aging, biopolitics and irresponse-ability, Joanna Latimer

Madness, distress and refusing anti-stigma campaigns, Brigit McWade

Working class youth transitions to adulthood: the impact of territorial stigmatization among young social housing residents in the city of Porto, João Queirós and Virgilio Borges Pereira

Stigma: sign or symptom? A frame for change, Graham Scambler

Prison Stigma and the Decency of Home, Danya Keene

Territorial stigmatization at the margins of the postsocialist urban periphery:  Lessons from Romania, Gergő Pulay

Connor Sparrowhawk: the erosion of accountability and the administrative grotesque #JusticeforLB

reblogged from a guest post i did for justiceforlb.org @justiceforlb, with thanks to Dr George Julian for formatting and editing, and Sara Ryan for feedback.

Connor Sparrowhawk, the erosion of accountability and the administrative grotesque

We believe that everyone has the right to be unequal (Thatcher, 1975).

For me, it’s not a question of saying the NHS is ‘safe in my hands’. Of course it will be. My family is so often in the hands of the NHS. And I want them to be safe there. Tony Blair once explained his priority in three words: education, education, education. I can do it in three letters: NHS (Cameron, 2006).

Loving a disabled child
Put yourself for a moment into a mother’s shoes. You have a baby, you call him Connor, he is a beautiful, much loved and much wanted addition to your family. He has learning disabilities, and will later be diagnosed as autistic and epileptic. As he grows up you find the services provided for children like him are patchy, unconnected and difficult to access:

It’s a tough gig bringing up a disabled child. Yep. It shouldn’t be, I know. Appropriate, timely and sufficient support would make a huge difference. And a seismic shift in public attitudes (Sara Ryan, Boundaries, February 11 2013).

You are unrelenting in seeking support for your child, finding ways to navigate agencies and services making sure he can attend a caring school. You begin to write a blog about your life, random happenings, images and observations; it soon becomes focused on life with your son as he ‘comes to the end of his school life and stands, unaware, on the edge of a huge gap in adult services’. As Connor becomes an adolescent, some of his behaviours become difficult to manage. You reflect on what his adult life holds in store, about the kinds of support he will need to continue to live a good life, a happy life, a decent and dignified live. Leading up to his 18th birthday, Connor gets increasingly anxious and agitated; he is laughing less, then not at all. Things aren’t working, Connor is depressed, unhappy, needs help, you all need help. He has some violent outbursts, and “the crunch” comes when he hits a teaching assistant at school. Connor is referred to a small specialist short-term acute assessment unit where his needs can be evaluated and a future care plan put in place. This NHS unit, Slade House, is only 5 minutes from your home and you will be able to visit him every day. It feels like a good temporary solution, one which will allow your family to work with medical professionals to figure out best options and a future plan for your son.

107 days later

Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company. The psychiatrist from the unit who called me at work around 10am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. Much like the ‘care’ he’d always experienced outside home and school.

I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds.

I hugged him while he died.

Unspeakable horror.

Agonising pain.

We are now in a space I can’t describe (Sara Ryan, The Day After, July 5 2013).

#JusticeforLB
Connor Sparrowhawk (known as Laughing Boy, or LB) drowned in the bath in an NHS Assessment and Treatment Unit (Slade House) for adults with disabilities, on the 4th of July, 2013. Connor was 18 years old and had been in ‘the care’ of the unit for 107 days. The NHS trust (Southern Health) initially attributed his death to natural causes. Connor’s mother, Sara Ryan, a disability researcher, had already been writing a (then anonymous) blog – Mydaftlife– about family life with Connor. After he died she, along with family, friends and supporters, began a campaign to seek justice for him. An inquest into Connor’s death began on Monday 5 October 2015, and for the first time in British history a Coroners hearing, was live tweeted @LBInquest. The Coroner’s Jury found that Connor’s death was preventable, and that neglect had played a part: A two year fight to be told that an epileptic teenager with learning disabilities shouldn’t have been left unsupervised in a bath in ‘a secure and safe’ specialist unit. As a consequence of Connor’s death, and under considerable pressure from the #JusticeforLB campaign, NHS England commissioned Mazars, an auditing firm, to review ‘all deaths of people in receipt of care from Mental Health and Learning Disability services in Southern Health Trust between April 2011 and March 2015’. The findings of this report reveal that this particular trust had failed to investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems.

Focusing on the deaths of learning disability uncovered by Mazars, and drawing on Chris Hatton’s careful analysis, from April 2011 to March 2015, there were in total 365 deaths of people with learning disabilities under the care of Southern Health learning disability services. That’s over 90 deaths of people with learning disabilities being cared for by Southern Health every year and 158 of these deaths were recorded as unexpected. However, Mazars also asks us not to trust this figure, as the recording systems used by Southern Health were ‘not working’, confused and in effect useless:

the deaths of people with a Learning Disability are not made visible in the recorded data presented to the Trust Board and to regulators and commissioners whether expected or not; natural or unnatural. … It is not therefore possible to rely on published information as an accurate measure of risk or death related incidents in the Trust. … The overall level of unexpected deaths has not been reported anywhere so there has not been an accurate reflection of the levels of deaths occurring amongst patients (Mazars, Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust, April 2011 to March 2015, December 2015).

The Mazars report couldn’t, in the absence of accurate data, account for the number of learning disabled people who had died in their care: It did reveal that nobody was accounting for them.

Notably, of the 158 deaths of people with learning disabilities which were recorded as unexpected, Southern Health only reviewed 68 of them, and only 1 of these got as far as what is called a Serious Critical Incident Review. As Hatton notes “In total, 99% of unexpected deaths of people with learning disabilities were not recorded on a national system that would have brought them to the attention of commissioners or the national level Care Quality Commission [the independent regulator of Health and Social Care in England]”. In short:

the Mazars review brings into the open what feels like a fundamental disregard for the lives of people with learning disabilities, even within organisations that are supposed to be supporting people (Chris Hatton, Heart of Darkness, 2015).

The #JusticeforLB movement has succeeded in exposing the most disturbing and penurious facts about the British states treatment of learning disabled people since the Winterbourne Inquiry (which detailed the criminal abuse by staff of patients at a privately owned care facility called Winterbourne View Hospital, near Bristol, but was only exposed by the work of uncover journalism supported by the BBC’s Panorama team). Since Connor’s death, many have come forward to speak about ongoing failures in care for learning disabled people, about neglect, about their struggles to get answers about the deaths of loved ones, and about their fears for the future in the face of seemingly permanent reductions in funding for adult social care. In the context of seemingly permanent austerity, Connor’s death raises fundamental questions about the future of welfare itself. Indeed, it is imperative that we understand #JusticeforLB’s struggle for accountability within the context of ‘the virtually impenetrable Health & Social Care Act (2013)’ (Youssef El-Gingihy, 2015: 3), which came into law three months before Connor’s death. As Jacky Davy, John Lister and David Wrigley note in their important account of the systematic demolition of the NHS, NHS for Sale: Myths, Lies and Deception (2015), one of the first casualties of the Health and Social Care Act (2013) was accountability itself. (see also Accountability in the NHS: Implications of the government’s health reform programme, Jo Maybin, Rachael Addicott, Anna Dixon and John Storey, The King’s Fund, 2011, Lords warn on ministerial accountability in NHS reforms, The Guardian, 2011).

Shouting “into an ideological headwind of gale-force strength” (Peck, 2013)
While we know why Connor died (he died of neglect), to have his death accounted for has proven more challenging. This is due in no small part to the baffling complexity of what we used to call ‘the National Health Service’ (NHS). In effect, the NHS no longer exists, or at least not in a form those who created it would recognize (see El-Gingihy, 2015).

The Kings Fund has produced an animated film which attempts to explain the structure of commissioners, boards, trusts and service providers who constitute the contemporary NHS since the most recent round of ‘reforms’ instituted by the collation Government in 2012:

https://player.vimeo.com/video/69224754

Today, the closet thing we have to central governance, and national level accountability, within the NHS is “a body” called NHS England, which receives the bulk of tax-payers funding to pay for the services we receive. NHS England is primarily a commissioning body, however, the bulk of actual commissioning work is devolved to local ‘Clinical Commissioning Groups’ (made up of Doctors, nurses, some members of the public ,‘health professionals’, and a significant number of private health company representatives and shareholders) who commission services from a range of ‘pubic’ and ‘private’ service providers. These changes in the government of the National Health Service where made, the public was told, in order to “liberate”, as the Health and Social Care Act (2013) put it, hospitals, GPs and local authorities to decide what kinds and levels of provision to make to the public.

In the case of Connor Sparrowhawk, the liberated services which had been ‘commissioned’ to care for him where provided by an NHS Foundation Trust called Southern Health, who are one of England’s largest providers of ‘community health, specialist mental health and learning disability services’. Mazars concluded that those in charge of overseeing the delivery of Southern Health services had catastrophically failed. In particular they noted that a ‘failure to bring about sustained improvement in the identification of unexpected death and in the quality and timeliness of reports into those deaths is a failure of leadership and of governance’. What are the consequences of this failure of leadership and governance? Who can be held to account in a context where the government has devolved its “constitutional responsibility” to provide NHS services? Where does legal and political responsibility lie? With those whose neglect contributed to Connor’s death? With Southern Health? With the CCG who commissioned their services? With NHS England? With the Secretary of State for Health? If all of these ‘bodies’ are in some part accountable, who can hold them to account, what are the systems for accounting?

the administrative grotesque 
In Abnormal: Lectures at the College de France. 1974-1975, Michel Foucault describes a system of neoliberal governmentality he calls the “administrative grotesque”, ‘in which the person to whom power is given is at the same time ridiculed or made abject or shown in an unfavourable light, through a number of rites and ceremonies’(Foucault, 2003, p. 13). In terms of the administrative bureaucracy faced by #JusticeforLB, we might think here of the rituals of meetings, minutes, memos, investigations, hearings, evidence, reports and the ceremony of public apology. What Foucault argues, is that these rituals often reveal those who wield power in an unfavourable light, even ridiculing them, but this has doesn’t have the effect of limiting their power but on the contrary and perversely, it strengthens and strangely further legitimates their hold on power. As Foucault puts it, the administrative grotesque, grants ‘a striking form of expression to the unavoidability, the inevitability of power, which can function in its full rigor and at the extreme point of its rationality even when in the hands of someone who is effectively discredited’ (Foucault, 2003, p. 13).

What we can learn from this is that practices of calling to account, activist practices engaged in revealing, showing, demanding and even disgracing bureaucrats, managers, mandarins, and politicians, can in effect support the very system they challenge. Hence the response of administrative and governmental bodies to #JusticeforLB and to the grotesque facts revealed by Mazars is: “It’s a Fair Cop”, you are right, we have failed, we haven’t done well enough, we are sorry, you have effectively shamed us, but we cannot, will not, relinquish any power as this will simply make the systems that we are reforming, it will make these failing systems collapse, and the more you needle us, the deeper and more extensive the rot at the heart of the systems of ‘care’ you expose are revealed, the more mandarins implicated in this administrative grotesque, the tighter, in fact, is our grip on power.

The ‘exercise of power through the explicit disqualification of the person who wields it’ speaks to those discredited by the Mazars report for whom there have been no consequences, but also offers useful clues as to the wider system of governmentality which have inexorably eroded systems of accountability, and with it the possibility for redress and justice, within the NHS and other increasingly fragmented and privatised public services and institutions (Foucault, 2003, pp. 35–6). There is, Thatcher liked to say, no alternative. What we face today is TINA on speed. As Jamie Peck puts it:

In contrast to the first major wave of cuts, back in the 1980s – when Thatcher, Reagan and others in the early vanguard of the neoliberal project were confidently predicting a much brighter upside (once the bureaucratic red tape and welfare-state impediments were removed), the political rhetoric of today is colored in much darker hues. Maybe we are still being told that there is no alternative, but now it is that there is no alternative to protracted pain and suffering, to permanent reductions in public services, even those once deemed ‘essential’ (Peck, 2013)

One concrete consequence of these permanent reductions in public services is the erosion of the ability of citizens to hold their Government to account. Or to put it more plainly, permanent reductions in public services necessitates the erosion of structures of accountability.

The hollow rituals of apology without accountability 
On December 10th 2015, the leaked Mazars findings provoked the tabling of an ‘urgent question’ to the Health Sectary Jeremy Hunt in the House of Commons. Hunt made a public apology to Sara Ryan and her family. Hunt thanked the #JusticeforLB campaign, and suggested he was grateful for their exposure of the failures at Southern Health.

In his 2005 book, DIRECT DEMOCRACY: An Agenda for a New Model Party, Hunt not only put forward a case for the privatisation of the NHS, but specifically argued for an end to government accountability for the welfare state. Hunt stated, “what is needed is not the accountability of services to central government – precisely the error of the Attlee settlement whose failed systems we still inhabit.” (Hunt, 2003: 5). Attlee was the Labour Prime-Minister (1945 to 1951) who oversaw the development of the post-war welfare state. His Health Minister, Aneurin Bevan, created the National Health Service (NHS) in 1948. Hunt’s political ambition, to rid the government, and specially the Department of Health, for accountability for failures in care, is precisely what has come to pass, though the establishment of NHS England, and ‘chaotic and ill-prepared’ local Clinical Commissioning Groups. Decentralised ‘accountability’, said Hunt, ‘must be direct, democratic and local’ (Hunt, 2005), in actuality devolved accountability, market-based accountability, exercises authority through obfuscation, a strategy which seems to centre on tiring out those who attempt to question and challenge.

The administrative grotesque which characterises the state we are in, marks a departure from Attlee’s radical vision of a Government for the people to government of the people by an impenetrable networks of vested interests.

The bones of hope
Judith Butler notes, ‘Many people think that grief is privatizing, that it returns us to a solitary situation, but I think it exposes the constitutive sociality of the self, a basis for thinking a political community of a complex order (Butler, 2004, p. 18). The counter-political community of #JusticeforLB has exposed the horror of the administrative grotesque. This has been no small undertaking, but has involved the harnessing of an arsenal of strategies and technologies: the #107days campaign and actions, the use of digital and off-line activist practices: twitter, blogging, vimeo, the #LBBill, the Justice Quilt, the Justice Shed, films, art exhibitions, the #JusticeforLB Symposium, picnics and flags. This is a movement grounded in grief and love, but moved, agitated, kept alive, by the promise of justice for people with learning disabilities, and the possibility of a different welfare future.