Imogen Tyler has published a short article about workfare in The Precariat.
Read the full edition here.
Imogen Tyler has published a short article about workfare in The Precariat.
Read the full edition here.
Racism is a social issue which we ALL need to address. This is a small preliminary collection of online resources gathered by Dr Alison Phipps, myself and others which offers various kinds of advice on what you can do if you are witness to hate speech, (I am writing this with race hate in mind, but applies also to sexist, gender-based or disablist hate speech). One of the ideas behind bystander intervention is training individuals and communities to know how to act, (and how to act together, collectively, in public spaces – to support each other to act). Often people stay silent when they witness harassment, as they are frightened of intervening. However, for those who are targeted by hate, the silence of witnesses is often experienced as complicity.
WHAT CAN WE DO
Bystander intervention need not always be confrontational and may include:
Feminist Philosophers Blog suggest the following:”NEVER engage the perpetrator. He is looking for confrontation. Instead speak to the person he is abusing. Say hello. Introduce yourself. Shake his or her hand. And just stand with them. Keep talking. About anything. Weather. Bus schedules. Football. .. Form a group of people with and around them if you can“
Suggestions from Shane Boothby, editor of the Leveller:
Please feel free to contact me with more resources to add: @drimogentyler
RESOURCES FROM OUTSIDE UK
A Lancaster launch of the national NUS campaign “Why is my Curriculum White?” will be held next week at which all staff and students are welcome and encouraged to attend. Please circulate widely to colleagues and friends. Watch the UCL campaign video here: https://www.youtube.com/watch?v=Dscx4h2l-Pk
I am saddened by the untimely death of my colleague and friend Professor John Urry. I have worked alongside John for 17 years at Lancaster. He was my mentor when I was appointed as a lecturer in 1998 and he has been the warmest, kindest and most encouraging colleague. His death will leave a gaping hole in the Sociology Department; it is impossible to imagine our staff meetings, postgraduate conferences and research events without his smiling presence. John told me that he never intended to retire as he had too much to do. A champion of civic freedom, environmental and social justice issues, John was an anti-elitist in an age increasingly dominated by global elites (the ‘offshore class’ as he called them). He was a public sociologist, he loved twitter and he used this and other platforms to express criticism of the corrosion of democratic accountability and the erosion of the welfare state. These concerns were reflected in his recent work on inequalities, such as the global wealth gap, the concealment of wealth in tax havens (Offshoring), the inequality effects of climate change and ‘mobility-generated inequalities’. He understood that in order to confront climate change, rich societies urgently need to ‘power down’, but deepening economic inequalities make this almost impossible – therefore more equal societies are a fundamental requirement of post-oil, degrowth human futures. However, John was never a pessimist and one of his many legacies will be his enduring belief in the ability of technology, when harnessed to a sociological imagination, to tackle the most pressing social problems and bring about democratising forms of social change. I am going to miss his optimism most of all.
John and I at our joint Societies Beyond Oil and Revolting Subjects book launch in Lancaster, 2013.
The right to a dignified and independent life: Learning from The History of the Disability Rights Movement
Imogen Tyler, March 2016
‘Those who cannot work, such as the sick, aged or unemployed, are subject to a tremendous pressure to feel useless … we reject any view of ourselves as being lucky to be allowed to live’. Paul Hunt, 1966
Given the resigination of Iain Duncan Smith as work and pensions secretary, apparently in protest against £4bn of planned cuts to disability benefits – and specifically because he feels that cuts to the Personal Independence Payments (PIP) — which will replace the now defunct Independent Living Fund and Disability Living Allowance (DLA) — are “a step too far” in the Government’s austerity driven welfare reforms, it seems an apt moment to reflect on the history of disability activism which first established the rights of disabled people to a dignified and independent life–rights which while never fully realised are now in total disarray, if not fatally undermined.
As part of a research project on the politics of stigma, I have been revisting the work of the disability activist Paul Hunt (1937 – 1979). In 1966, Hunt edited a collection of essays ‘Stigma: The Experience of Disability’. Composed of essays by 12 disabled people, written to Hunt while he lived in institutional care, this is an extraordinarily powerful and ground-breaking book which documented and reflected on the stigma of living a disabled life in Britain in the 1960s. Hunt’s aim was not ‘sentimental autobiography’ and certainly not ‘charity’ (which he abhored) but on the contrary, was an attempt, drawing in particular on the US civil rights movement, to draw on personal experience as a means of jump-starting a movement for social and political change. ‘Stigma’ offered an insight into myriad problems faced by disabled people — poverty, discrimination, physical barriers, limited access to information about rights and services, deprivation of relationship and sexual rights, denial of housing, lack of access to medical services. Hunt opens his own brilliant essay in this volume with the words:
‘All my adult life has been spent in institutions amongst people who, like myself, have severe and often progressive physical disabilities. We are paralysed and deformed, most of us in wheel chairs, either as the result of accident or of diseases like rheumatoid arthritis, multiple sclerosis, muscular dystrophy, cerebral palsy and polio. … In these circumstances the most acute questions arise and the most radical ‘answers’ are called for.
In 1972, he wrote a short letter to The Guardian ‘calling for “the formation of a consumer group to put forward the views of actual and potential residents” of residential institutions:
Severely physically handicapped people find themselves in isolated unsuitable institutions where their views are ignored and they are subject to authoritarian and often cruel regimes. I am proposing the formation of a consumer group to put forward nationally the views of actual and potential residents of these successors to the Workhouse.
As a consequence of the many responses received to his letter, Hunt joined Disablement Income Group – which had formed in 1965 to campaign for increased state benefits for disabled people – specifically in the form of a basic and just disability income. As Vic Finkelstein, the disability activist, scholar and writer, reflected:
The emergence of DIG was an early symptom of the shifting focus away from our “defective” bodies, which we had been conditioned into believing was the sum total of our misfortune, and onto the provision of benefits to enable a more equitable lifestyle in the community regardless of type of impairment or where this was acquired. (Finkelstein, 2004:7)
In 1974, with Finkelstein, Hunt set up The Union of the Physically Impaired Against Segregation (UPIAS). It was UPIAS who crafted the “social model of disability”, arguing that disability is fundamentally a political problem –people are disabled by society, not by their bodies (impairments).
While the impact and history of the UPIAS is contested (some critics argue it was too political –it was Marxist in leanings– and also exclusionary in terms of its focus on people with physical disabilities), there is no doubt that it changed the lives of disabled people across the world–and in the context of the current rolling back of disability and welfare rights its demands deserve a new hearing.
Hunt ‘escaped’ from institutional care in 1970, got married, raised a family, and all the while continued to work as a leading activist for disability rights until his death.
Below is an edited extract from the manifesto of the The Union of the Physically Impaired Against Segregation, from 1974. It is well worth a read.
UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGATION
The Union aims to have all segregated facilities for physically impaired people replaced by arrangements for us to participate fully in society. These arrangements must include the necessary financial, medical, technical, educational and other help required from the State to enable us to gain the maximum possible independence in daily living activities, to achieve mobility, to undertake productive work, and to live where and how we choose with full control over our lives.
1. DISABILITY AND SEGREGATION
Britain today has the necessary knowledge and the advanced technology to bring physically impaired people into the mainstream of life and enable us to contribute fully to society. But instead of the Countrys resources being concentrated on basic human problems like ours, they are frequently misspent, for example, on making sophisticated weapons of destruction, and onprojects like Concorde and Centre Point. So despite the creation today of such an enormous capacity, which could help overcome disability, the way this capacity is misdirected means that many physically impaired people arestill unnecessarily barred from full participation in society. We find ourselves isolated and excluded by such things as flights of steps, inadequate public and personal transport, unsuitable housing, rigid work routines infactories and offices, and a lack of up-to-date aids and equipment.
2. There are a few individual examples of severely impaired people being able to overcome many of these barriers by the use of sufficient resources in the right way. They prove that integration is possible. But as a group we are still often forced to put up with segregated and inferior facilities. We get sent to special schools, colleges or training centres. We are systematically channelled into segregated factories, centres, Homes, hostels and clubs. If we do manage to become mobile, it is often in antiquated tricycles or specially labelled transport. All these segregated forms of help represented progress in years past. But since the means for integration now undoubtedly exists, our confinement to segregated facilities is increasingly oppressive and dehumanising.
3. RECENT ADVANCES
The struggles of disabled people and their relatives and friends, together with advances in technology and medical science, have it is true resulted in larger numbers of us participating more fully in ordinary society in recent years. Some of the barriers which segregate us have been partially overcome or dismantled. So a good proportion of people with paraplegia, or those who are blind, for example, have become able to work and to lead relatively active lives which would have been hard to imagine less than 50 years ago. These developments have meant a positive shift in the attitudes of some able-bodied people as they have responded to our presence amongst them.
4. Such advances show that general attitudes can be changed for the better. They also point to our increased participation in society as the principal means for achieving further change. But they cannot blind us to what remains the basic reality of the position of disabled people as a group. This society is based on the necessity for people to compete in the labour market in order to earn a living. To the employer of labour, the physically impaired are not usually as good a buy as the non-impaired. We therefore end up at or near the bottom of this society as an oppressed group.
5. LOW BARGAINING-POWER
When we do succeed in getting employment, our comparatively low productivity means that we have low bargaining-power when it comes to negotiating decent treatment and facilities. Our position is similar to that of many people who are middle-aged or elderly, who have had break-downs, or are mentally handicapped, black, ex-prisoners, unskilled workers, etc. We are usually among the first to lose our jobs and be cast on the scrap-heap when it suits the needs of the economy. If we are lucky we may bedrawn in again, to do the worst paid work, when business starts to boom once more. If we are unlucky, then we could face a lifetime on the degrading, means-tested poverty line. If we are very unlucky we may be consigned to a soul-destroying institution.
6. INSTITUTIONS – THE ULTIMATE HUMAN SCRAP-HEAPS
The union of the Physically Impaired believes that the reality of our positionas an oppressed group can be seen most clearly in segregated residential institutions, the ultimate human scrap-heaps of this society. Thousands of people, whose only crime is being physically impaired, are sentenced tothese prisons for life -which may these days be a long one. For the vast majority there is still no alternative, no appeal, no remission of sentence for good behaviour, no escape except the escape from life itself.
7. The cruelty, petty humiliation, and physical and mental deprivation suffered in residential institutions, where isolation and segregation have been carried to extremes, lays bare the essentially oppressive relations of this society with its physically impaired members. As in most similar places,such as special schools, there are some staff and volunteers doing their best to help the residents. But their efforts are systematically overwhelmed by the basic function of segregated institutions, which is to look after batches ofdisabled people – and in the process convince them that they cannot
realistically expect to participate fully in society and earn a good living. This function was generally appropriate when special residential institutionsfirst came into being, since in the competitive conditions of the time many physically impaired people could not even survive without their help. But now it has become increasingly possible for severely impaired people notjust to survive, but also to work and become fully integrated, the need for segregated institutions no longer exists in the way it did. They have become seriously out of step with the changed social and technological conditions of Britain today.
8. SUPPORT FOR RESIDENTS STRUGGLES
The Union of the Physically Impaired regards the neglected issues of institutions as of crucial importance in the field of disability. We therefore place great emphasis on supporting the struggles of residents in existing residential institutions for better conditions, for full control over their personal affairs, and for a democratic say in the management of their Home, Centre or Unit. The Union strongly opposes all attempts by the authorities to impose restrictions on visiting; to fix times for getting into and out of bed;to limit residents freedom to come in and go out when they wish; to enforce medical and nursing opinions, or to transfer residents to other institutions against their will.
9. The Union sees a need for a Charter which will focus on basic rights often denied when people are dependent on others for personal needs. Disabled people living in institutions will be offered help if they wish to organise locally in defence of their rights. The Union will develop an adviceand mutual-help service to assist with negotiations, formation of residents committees etc. When asked, we will mobilise support and publicity on a national basis for those involved in particular struggles.
10. ALTERNATIVES NEEDED
The Union is opposed to the building of any further segregated institutions by the State or by voluntary organisations. We believe that providing adequate services to people in their own homes is a much better use of resources. We also call urgently for the provision of non-institutional alternative housing, for example, along the lines of the Fokus scheme inSweden, which makes genuine progress towards secure, integrated, and active living for disabled people who need extensive personal help. The Union will try to assist anyone who seeks to move out – or stay out – of aninstitution. But we fully respect the feelings of individuals who regard institutional life as their best solution at the present time. We understand also that some disabled people will disagree with our views on segregation,and we hope that they will organise to put forward their arguments too.
11. REAL CHOICE
The Unions eventual object is to achieve a situation where as physically impaired people we all have the means to choose where and how we wish to live. This will involve the phasing out of segregated institutions maintained by the State or charities. While any of these institutions are maintained at ahuge cost, it is inconceivable that we will all receive in addition the full resources needed to provide us with a genuine opportunity to live as we choose. This point applies not just to residential homes, hospital units,hostels, villages and settlements, but also to other kinds of segregated facilities. As long as there are vastly expensive special schools, colleges and day-centres, heavily subsidised workshops and factories, and separate holiday camps and hotels, there can be no question of sufficient alternative provision being made to ensure that we all have a real opportunity of equal participation in normal educational, work and leisure activities.
12. DISABLEMENT OUTSIDE INSTITUTIONS
Our Union maintains that the present existence of segregated institutions and facilities is of direct relevance even for less severely impaired people whomay expect to avoid having to use them. Those of us who live outside institutions can fully understand the meaning of disability in this society only when we take account of what happens to the people who come at thebottom of our particular group. Their existence and their struggles are an
essential part of the reality of disability and to ignore them is like assessing the condition of elderly people in this society without considering theexistence of geriatric wards.
13. It is also true that the kind of prejudiced attitudes we all experience -other people being asked if we take sugar in our tea is the usual example -are related to the continued unnecessary existence of sheltered institutions.Those who participate us are indicating that they think we are not capable of participating fully and making our own decisions. They are harking back to the time when disabled people had to be sheltered much more, and theyimply that really we ought to be back in our rightful place – that is, a special
school, club, hospital unit, Home or workshop. Physically impaired people
will never be fully accepted in ordinary society while segregated institutionscontinue to exist, if only because their unnecessary survival today reinforces out of date attitudes and prejudices.
14. MEDICAL TRADITION
Both inside and outside institutions, the traditional way of dealing with disabled people has been for doctors and other professionals to decide what is best for us. It is of course a fact that we sometimes require skilledmedical help to treat our physical impairments – operations, drugs and nursing care. We may also need therapists to help restore or maintain physical function, and to advise us on aids to independence and mobility.But the imposition of medical authority, and of a medical definition of our
problems of living in society, have to be resisted strongly. First and foremost we are people, not patients, cases, spastics, the deaf, the blind, wheelchairs or the sick.
Our Union rejects entirely any idea of medical or other experts having the right to tell us how we should live, or withholding information from us, or take decisions behind our backs.
15 We reject also the whole idea of experts and professionals holding forth on how we should accept our disabilities, or giving learned lectures about the psychology of disablement. We already know what it feels like to be poor, isolated, segregated, done good to, stared at, and talked down to – far better than any able-bodied expert. We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in, are ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top our physical impairments by the way this society is organised to exclude us. In our view, it is only the actual impairment which we must accept; the additional and totally unnecessary problems caused by the way we are treated are essentially to be overcome and not accepted. We look forward to the daywhen the army of experts on our social and psychological problems can find more productive work.
16. THE RIGHT KIND OF HELP
We know that as a small, weak, minority group, disabled people cannot achieve a fully human life by their own efforts alone. We need and welcome the help of sympathetic able-bodied people. But the basic problem we faceis our exclusion from full social participation. It follows that this oppressive situation can be put right only by disabled people actually taking a more active part in society. The efforts of professionals and other able-bodied people are therefore really constructive only when they build on and encourage the self-help and activity of disabled people themselves. This is why our energies as a Union will be directed mainly towards discussion and common action with other disabled people. Neither we as a Union, nor able-bodied people, can solve other disabled peoples problems for them. Those problems will be correctly tackled precisely to the extent that we all asdisabled people become involved and active in our own rehabilitation.
17. THE NEED FOR A UNION
Disabled people everywhere are already struggling against their isolation,segregation and other forms of oppression. Every day each of us has to face our own individual problems. And we are now increasingly getting together in groups to tackle more effectively the problems we find we havein common. This is shown by the vast growth of disability organisations in the last 25 years in Britain. Our Union takes this process of coming together a stage further. We are not restricted to one aspect of physical disability(e.g. mobility or incomes), nor to people with one medical diagnosis, nor to
those in one locality. The Union exists simply to offer help to all physically impaired people in the fight to change the conditions of life which oppress us and to realise our full human potential.
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…
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‘We often pull up skulls and bones in our nets.’ (Lampedusa fisherman to BBC reporter, April, 2015)
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…
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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.
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…
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by Brigit McWade
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 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.
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.