Refugees are not a crisis, global apartheid is the crisis

Social Abjection

by Imogen Tyler and Jenna Loyd, also published on Open Democracy

This is my family.

Baba, mama, baby all washed up on the shore. This is 28 shoeless survivors and thousands of bodies.

Bodies Syrian, Bodies Somali, Bodies Afghan, Bodies Ethiopian, Bodies Eritrean. Bodies Palestinian.

Jehan Bsesio, ‘No Search, No Rescue’, 2015.

Ursula Le Guin’s dystopian novel The Dispossessed (1974) is set on a moon called Anarres, where an anarchist community established itself after breaking away from the capitalist mother-planet Urras. During a history lesson, children in Anarres are shown archival film footage of a beach on Urras, which speaks to the horrific visual iconography of contemporary Europe. The film’s voiceover provides a commentary upon the images in the film:

“Bodies of children dead of starvation and disease are burned on the beaches. On the beaches of Tius, seven hundred kilometres away … women kept for the sexual…

View original post 1,810 more words

The Marketization of Mobility: Some thoughts on Value, Movement and Classification

Mobilities Research

Refugees of Kos - skibbereeneagle.ie

‘We often pull up skulls and bones in our nets.’ (Lampedusa fisherman to BBC reporter, April, 2015)

Imogen Tyler, professor of Sociology at Lancaster, discusses her research on stigma and migration. In the context of the ongoing migrant crisis in Europe, Tyler warns against ‘the intensive proliferation of legal instruments to (re)distribute mobility along market lines’.

If you arrive at Europe’s borders today, the class of migrant you are sorted into matters. It matters because it determines your mobility, your ability to cross a border, the kind of risks you might have to take to do so, and your ability to stake a claim to remain in a particular place. It also matters because it shapes how you are perceived and treated by those you encounter on your journey. In short, how you are classified as you cross, or attempt to cross, a border determines your access to mobility. It determines…

View original post 1,665 more words

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.

#justiceforlb: The multiple afterlives of Connor Sparrowhawk

Imogen Tyler will be taking part in this panel discussion with George Julian, Chris Hatton, and Hannah Morgan at The Futures of the End of Life conference, Lancaster House Hotel, 21st-22nd January.

I made sounds at the John Radcliffe hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness.

I hugged him while he died.

Unspeakable horror.

Agonising pain.

We are now in a space I can’t describe.

Sara Ryan, blog post, July 5th 2013

The #justiceforlb campaign and the scale of its impact, has much to teach us about the entanglements of death, mourning, commemoration, mediation, activism, social movements and justice in a digital age.

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 Coronor’s Jury found that Connor’s death was preventable, and that neglect had played a part. As a consequence, NHS England commissioned Mazars, an audit firm, to examine the deaths of 10,306 patients in the care of Southern Health trust between April 2011 and March 2010. The findings of this report, leaked to the BBC, revealed that the trust had failed to investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. 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, yet as we write the Mazars report is still being withheld. The national implications of the Mazars findings are staggering.

This panel, composed of George Julian, the knowledge transfer expert who has led the #justiceforlb campaign, Professor Chris Hatton, who researches health and social inequalities with a particular focus on learning disabilities and social policy, Professor Imogen Tyler, a sociologist of inequalities and Hannah Morgan, a disability studies lecturer who works on the rights of disabled people, will reflect on the multiple afterlives of Connor Sparrowhawk: the #107 days campaign and actions, the use of digital and off-line activist practices: twitter, blogging, vimeo,  the LB Bill, the Justice Quilt, the Justice Shed, films,  art exhibitions, the #JusticeforLB Symposium, picnics and flags, along with the tears, mourning, loss, anger and rage  which have shaped this extraordinary, ongoing and growing movement for justice for people with learning disabilities.

A Berlin visit to talk Human Rights, Austerity, and Refugee Mobilizations

The week commencing 2nd November 2015, Imogen will be contributing to two events in Berlin.

The first event on Monday 2nd November 2015 is panel discussion on Austerity and Human Rights in Europe and the UK at 6pm, hosted by The Centre for British Studies, Humboldt University. In the Auditorium, Jacob-und-Wilhelm-Grimm-Zentrum,
Geschwister-Scholl-Str. 3, 10117 Berlin.

The second on Tuesday 3rd November 2015 is a workshop on Refugee Mobilizations, organised by the Institute for Protest. 9.15 a.m – 6.30 p.m. Franz-Mehring-Platz 1, Berlin-Friedrichshain: http://protestinstitut.eu/veranstaltungen/workshop-refugee-mobilizations/