We must all join the fight against disablism

Dan Goodley (University of Sheffield), Katherine Runswick Cole (Manchester Metropolitan University) and Rebecca Lawthom (Manchester Metropolitan University)

The news last Friday that an NHS Trust has failed its patients raises huge questions about the quality of health services for people with learning disabilities. But it also highlights how we – as a society – continue to devalue the lives of people with learning disabilities. There is an urgent need to build a wide collective that fights injustice in the lives of people so-labelled.

On Thursday 4th July 2013, 18 year old Connor Sparrowhawk had an epileptic seizure and drowned in a bath at Slade House in Oxford, an Assessment and Treatment centre run by Southern Health NHS Trust. Connor had learning disabilities. He was, of course, much more than this. His nickname was Laughing Boy, he loved London buses, music, cakes and was a much loved member of his family. An external investigation found that Connor’s death was preventable [1]. The Care Quality Commission inspected the unit at Slade house and said that it did not meet the required standards. The unit is now closed to new patients. Connor’s family – including his mother Dr Sara Ryan – set up the @JusticeforLB campaign to seek answers around his death and accountability. Their activism led to a number of independent inquiries and reports: details of which you can find on the campaign website [1]. These investigations revealed hundreds of unexplained deaths of people with learning disabilities who were under the care of Southern Health. We now learn today, over two and half years since Connor’s death, that Southern Health continues to put patients at risk [2]. The report, again by the Care Quality Commission [3], reveals systemic failings and neglectful services. Clearly, Southern Health will have to respond to this damning review of their services. And of course there are huge concerns raised about the responsiveness of services, the style of governance and quality of leadership. But, this report should act as a catalyst for wider soul searching and self-critique in our wider communities in relation to the ways in which we all do – or do not – value the lives of people with learning disabilities.

Disabled people and their representative organisations have long argued that our society is marked by the stains of disablism: the exclusion of people with impairments from wider society. Disablism is endemic. People with learning disabilities are more likely to be exposed to common social determinants of poor ill health and low psychological well-being including poverty, poor housing conditions, unemployment or poor employment support, social disconnectedness and overt discrimination. A brief forage around the internet reveals some some harrowing data. Here are some headline figures. People with learning disabilities:

Die on average 24 years younger than their non-disabled peers;
Are 2.5 times more likely to have health problems than other people;
Experience higher rates of hospital admission (76 per 1000 adults) compared with non-disabled people (15 in 1000);
Are prescribed anti-psychotic medication in absence of psychiatric illness (13% of all people with learning disabilities);
Are subjected to systematic abuse, dangerous restraint methods and needless suffering in the care of the NHS.

These facts and figures constitute a national scandal. We need to act now to challenge these injustices in our communities. The case of Connor Sparrowhawk highlights the fact that the search for justice and accountability tends to only happen when people with learning disabilities and their families fight for their human rights. Too often, though, this is a fight for recognition: that people with learning disabilities are full human beings just like anyone else. And people with learning disabilities and their families risk being dismissed as unreasonable and vindictive agitators [4]. Disablism is not simply something that disabled people and their families should fight alone. We need to broaden the fight against the dehumanisation of people with learning disabilities. Unless we as a wider society start to share the struggle then individuals and families – such as Connor and his loved ones – will remain marginalised from our communities. Competing against disablism is one that we all must share – across health, social care and education – and in the daily mundane, everyday encounters that we have with one another. Many years ago people with learning disabilities came together – across the globe – under the banner of self-advocacy: to individually and collectively speak up about their aspirations and ambitions. And the label that many chose for their self-advocacy groups was this: People First [5]. We are all people first. We should not forget this.

[1] http://justiceforlb.org/
[2] http://www.bbc.co.uk/news/uk-england-36160553
[3] http://www.cqc.org.uk/content/southern-health-nhs-foundation-trust-still-not-doing-enough-protect-people-its-care
[4] http://justiceforlb.org/a-culture-of-candour-justiceforlb/
[5] http://peoplefirstltd.com/

 

 

 

 

A deadly mix: The Junior Doctors’ strike, austerity and disabled people

 As junior doctors strike today what does this say about the current state of the NHS? The marketisation and dismantling of the NHS has been a key mark of policy at least since New Labour. But the current battle between junior doctors and the government relates to new contracts that doctors suggest will make their jobs more pressured thus lowering standards of patient care. But we have been before.

The recent #JusticeforLB and #107daysofaction campaigns have drawn attention to the myriad of ways in which people with learning disabilities are being failed, let down and neglected by our systems of healthcare. One of the recurring criticisms relates to the farming off of whole sections of the NHS to private providers who, inevitably, are expected to balance ‘value for money’ against ‘the quality of patient care’. Some would argue that in times of austerity we should expect the private sector to fill the spaces left by a radically receding health and welfare system. After all, aren’t we all neoliberal now? And there are of course many policy makers and service providers who now accept privatisation as the primary means of service delivery. But what is impossible to deny are the human costs of changes to healthcare and welfare provision.

 

• A suicide letter, written to the health minister, left by a junior doctor who felt unable to cope any further in their role [1]

 

• The deaths of people with learning disabilities as a result of poor service provision, institutional neglect and system failure [2]

 

• Changes to disability and employment benefits that have led to a number of suicides on the part of people who felt bereft without welfare support [3].

 

Some might say that it is an imperfect science to suggest that a rise in patient/staff deaths is positively correlated with the increased privatisation of healthcare. However, it would not be pushing the argument too far to conclude this; that these times of austerity and marketisation are deadly.

 

[1] http://www.dailymail.co.uk/news/article-3449031/Hopes-fade-missing-junior-doctor-walked-hospital.html

 

[2] http://www.bris.ac.uk/media-library/sites/cipold/migrated/documents/finalreportexecsum.pdf

 

[3] https://welfaretales.wordpress.com/category/suicide/

 

Invisible Britain, Sleaford Mods and disability activism

Invisible Britain [1] is a documentary film currently being screened around the UK, that follows the Nottingham R&B Punk band Sleaford Mods [2] ‘on a tour of the UK in the run up to the 2015 General Election, visiting the neglected, broken down and boarded up parts of the country that many would prefer to ignore’. And for once disabled people are up close, personal and present in film documentary – not as objects of curiosity – but as activists responding to austerity.

Invisible Britain is ‘Part band doc, part look at the state of the nation, the documentary features individuals and communities attempting to find hope among the ruins, against a blistering soundtrack by Sleaford Mods’ [1]. For those who don’t know them, Sleaford Mods are a fantastic politicised band whose music has been keenly taken up by fans of all ages [2]. Glib depictions of the band include John-Copper-Clarke-meets-The-Streets and The-Digital-Sex-Pistols. But they are much more than this. Their music is joyful, funny, angry and political, all in equal measure. Invisible Britain intersperses band footage with stats and stories of the impact of the cuts on working class communities the length and breadth of Britain. This makes for harrowing viewing as we are reminded about the very real impacts of the Bedroom Tax and moves from Incapacity Benefit to Employment and Support Allowance. The extreme stress caused by these two changes to welfare has been blamed for a number of high profile suicides on the part of disabled people, for examples [3], [4], [5], [6].

But Invisible Britain also gives us grounds for optimism: not least through the representation of disabled activists, set against the visceral soundtracks of Sleaford Mods, as these activists use the film to articulate their views against austerity. Space is given in the film to the input of Disabled People Against the Cuts [7] whose pioneering work ensures that the lives of disabled people are widely acknowledged by the media. Invisible Britain is an important counter-narrative to the usual disability-as-curiosity served up on mainstream TV. Disabled people are at the heart of numerous contemporary campaigns against austerity; not least because disabled people bear the brunt of welfare reforms. And if we want to find alternatives to austerity Britain, then disabled people and their representative organisations are leading the way. In the words of the Sleaford Mods ‘You better think about the future’ [8]: and the future is disability activism.

Dan Goodley, Rebecca Lawthom and Katherine Runswick Cole

[1] http://www.invisiblebritain.com/

[2] https://www.sleafordmods.com/

[3] http://www.huffingtonpost.co.uk/2013/04/20/benefits_disabled-man-nicholas-barker-welfare-reform_n_3121688.html?icid=maing-grid7|uk-bb|dl1|sec3_lnk3%26pLid%3D173371

[4] http://anotherangryvoice.blogspot.co.uk/2014/01/deadly-bedroom-tax-blundering.html

[5] http://www.theguardian.com/society/2014/jan/10/bedroom-tax-exemptions-stephanie-bottrill

[6] http://www.disabilitynewsservice.com/coroners-ground-breaking-verdict-suicide-was-triggered-by-fit-for-work-test/

[7] http://dpac.uk.net/

[8] https://www.youtube.com/watch?v=jcvBMyy8a7c

 

Act against the 21st Century institutionalisation of people with learning disabilities

Support the #7Daysofaction on twitter – Monday 18^th April 2016
by Dan Goodley

In 1993 I graduated from Manchester Metropolitan University with a psychology degree. My Mum and Dad were very proud. I was … unsettled. Not simply by the prospect of post-student life but by the discipline of psychology. One of the things I learnt on graduating was this: there were a helluva lot of psychological ideas that viewed disabled people as nothing more than pathological conditions. These ideas seemed to go against my understanding of disability that I had learnt from families and friends. Disability was, if anything, a complex phenomenon where people with physical, sensory and cognitive impairments were excluded from mainstream life. I did not get these words from thin air: in 1992 I had learnt about the social model of disability. This seemed more in line with my personal experiences of disability (and, for that matter, my politics). At the heart of this model is a simple but important idea: people with impairments are excluded from mainstream society through a host of economic, social and cultural barriers. Disability was and remains a social and political concern for all of us – whether we are disabled and non-disabled – and the exclusion of disabled people is a stain on our society.

During my psychology course I did come across some thought-provoking ideas including the work of Erving Goffman. He was pitched to us as a social psychologist; someone interested in the rules and conventions of everyday life and how these shape how people do being people. But also there was his work on stigma and on institutions. If you are looking for a good disability studies angle on Goffman check out this out here:

http://dsq-sds.org/article/view/4014

Goffman said many important things. One of these stuck with me, the problem of total institutions.

A total institution is a place of work and residence where a great number of similarly situated people, cut off from the wider community for a considerable time, lead an enclosed, formally administered life together.
https://www.boundless.com/sociology/textbooks/boundless-sociology-textbook/socialization-4/agents-of-socialization-46/resocialization-and-total-institutions-292-8259/

I was reading Goffman’s work in the 1990s when the Tory government was pushing for de-institutionalisation and community care. While some observers put the Tory reasoning down to reducing expenditure on institutional care there was an unholy alliance with disability activists who also called for the closing of institutions in which many disabled people, including people with learning disabilities, were housed, cut off from the wider community, leading enclosed, controlled, lacking, poor and unhealthy lives. Goffman provided theoretical language and empirical data to help articulate a politics of deinstitutionalisation. Yes, there were massive problems with community care. But, the process of deinstitutionalisation invited a consideration of how society at large responds to people with learning disabilities. Indeed, one of the knock on effects of closing down these institutions was an immediate growth in self-advocacy groups across Britain.

In 1995 I was lucky enough to become involved with the self-advocacy group Huddersfield People First. I met Elaine Hogg who was an incredibly vibrant soul. Elaine had spent over 20 years of her life in a well-known institution in Yorkshire, England. She told me about being made to wear weighted boots to stop her from running around the institution. She remembered being hit with the keys of one of the staff if she ‘misbehaved’. There were many doors to lock, many keys, and this was therefore a painful experience. On leaving the institution – as just one example of the streams of people that left these horrendous places as a consequence of deinstitutionalisation – she moved into a supported home. Shortly after ‘re-entering the community’ she joined an Avant-garde dance troupe. Her weighted boots were no longer a problem. And so, while problems persisted with community responses to people with learning disabilities (which ranged from hostility to indifference), I remember thinking that maybe Goffman’s ideas had been useful, perhaps even, trickled down into the mind-sets of policy makers and Tories. And maybe not all psychology was a pile of shite.

Fast forward to 2016. And the. #7Daysofaction on twitter – Monday 18^th April 2016. The press release is reproduced below.

 https://theatuscandal.wordpress.com/press-release/
Press Release from 7 Days of Action Campaign

Monday 18^th April 2016 sees the launch of the 7 Days of Action Campaign. The campaign is launched by the mothers and family members of people with learning disabilities who are currently trapped in Assessment & Treatment Units. These people have committed no crime. They have rarely been diagnosed with a mental health condition. Yet, they remain in Units for years at a time.

There are currently 3000 people in ATUs. 43% of the people are in Units more than 50K from their homes.
72% are being prescribed anti-psychotic medication as a means of containing them.
30% of people have been in ATUs for more than 5 years.
The average cost of being kept in an ATU is £3500 per week.

All these people want is to be living back home with their families or living in their own homes with support. And that is the aim of this campaign. To shine a light on the lives lived in ATUs but ultimately, to get people back to their own homes. On Monday 18^th April we will be launching a blog that each day for the 7 Days of action will tell a different story of someone who has experienced life in an Assessment and Treatment Unit. You can find the blog here: https://theatuscandal.wordpress.com/

+++++ End of press release ++++++

Has nothing changed? How can there still be so many people in these places? Did I dream what happened in the 1990s? It would seem that Goffman’s work is more important than ever. But, of course, social psychological ideas are only one element of how we articulate our passionate rejection of the institutionalisation, segregation, drugging and pathologisation of people with learning disabilities. We need to ask some serious questions.

• In times of austerity how can we come together to support one another to ensure that people with learning disabilities are not marginalised, excluded and cast off to the edges of our communities?
• How can we galvanise the #7Daysofaction campaign to connect with our comrades with and without learning disabilities to challenge the dehumanisation of people so-labelled?
• How do we keep the pressure on key players including government, to service providers and commissioners of services?
• How is it that we continue to incarcerate people with learning disabilities and WTF does that say about our society?
• How many more campaigns like @JusticeforLB @Justicefornico have to be launched before society starts viewing people with learning disabilities as fully human?
• And how much more pain and anguish do people with learning disabilities and their families have to endure?
• Just as many self-advocacy groups are folding in these austere times how can we support self-advocacy in the lives of people with learning disabilities?

I think Goffman would be fully behind #7Daysofaction on twitter, Monday 18^th April 2016. I hope you are too.

Learning journeys and JusticeforLB

Language and JusticeforLB
Max Neill, Dan Goodley, Rebecca Lawthom and Katherine Runswick Cole
On the 10th December 2015 the BBC reported the following:

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NHS trust ‘failed to investigate hundreds of deaths’
By Michael Buchanan, Social Affairs Correspondent, BBC News
10 December 2015
http://www.bbc.co.uk/news/health-35051845
The NHS has failed to investigate the unexpected deaths of more than 1,000 people since 2011, according to a report obtained by BBC News. It blames a “failure of leadership” at Southern Health NHS Foundation Trust. It says the deaths of mental health and learning-disability patients were not properly examined. Southern Health said it “fully accepted” the quality of processes for investigating and reporting a death needed to be better, but had improved. The trust is one of the country’s largest mental health trusts, covering Hampshire, Dorset, Wiltshire, Oxfordshire and Buckinghamshire and providing services to about 45,000 people. The investigation, commissioned by NHS England and carried out by Mazars, a large audit firm, looked at all deaths at the trust between April 2011 and March 2015. During that period, it found 10,306 people had died. Most were expected. However, 1,454 were not. Of those, 272 were treated as critical incidents, of which just 195 – 13% – were treated by the trust as a serious incident requiring investigation (SIRI).
Investigations
The likelihood of an unexpected death being investigated depended hugely on the type of patient.
The most likely group to see an investigation was adults with mental health problems, where 30% were investigated.
For those with learning disability the figure was 1%, and among over-65s with mental health problems it was just 0.3%.
The average age at death of those with a learning disability was 56 – over seven years younger than the national average.
Even when investigations were carried out, they were of a poor quality and often extremely late, the NHS England report says. Repeated criticisms from coroners about the timeliness and usefulness of reports provided for inquests by Southern Health failed to improve performance, while there was often little effort to engage with the families of the deceased.

Key findings from the report
The trust could not demonstrate a comprehensive systematic approach to learning from deaths. Despite the trust having comprehensive data on deaths, it failed to use it effectively.
Too few deaths among those with learning disability and over-65s with mental health problems were investigated, and some cases should have been investigated further.
In nearly two-thirds of investigations, there was no family involvement.
The reasons for the failures, says the report, lie squarely with senior executives and the trust board. There was no “effective” management of deaths or investigations or “effective focus or leadership from the board”, it says. Even when the board did ask relevant questions, the report says, they were constantly reassured by executives that processes were robust and investigations thorough. But the Mazars investigators said: “This is contrary to our findings.” The culture of Southern Health, which has been led by Katrina Percy since it was created in 2011, “results in lost learning, a lack of transparency when care problems occur, as well as lack of assurance to families that a death was not avoidable and has been properly investigated,” the report says. The report was ordered in 2013, after Connor Sparrowhawk, 18, drowned in a bath following an epileptic seizure while a patient in a Southern Health hospital in Oxford. An independent investigation said his death had been preventable, and an inquest jury found neglect by the trust had contributed to his death. Responding to the report’s findings, Connor’s mother, Sara Ryan, said the entire leadership of Southern Health had to go. She said: “There is no reason why in 2015 a report like this should come out. It’s a total scandal. It just sickens me.”

‘Considerable measures’ taken
The report’s authors, who spent months looking into how Southern Health failed to investigate so many deaths, seem to concur. They say: “We have little confidence that the trust has fully recognised the need for it to improve its reporting and investigation of deaths.”In response, Southern Health NHS Foundation Trust said it accepted its processes “had not always been up to the high standards our patients, their families and carers deserve. “However, we have already made substantial improvements in this area over a sustained period of time.”It added: “These issues are not unique to the trust and we welcome the opportunity to shine a spotlight on this important area. “Though the trust continues to challenge the draft report’s interpretation of the evidence, our focus and priority is on continuing to improve the services we provide for our patients.”

It said that when the final report was published by NHS England, it would review the recommendations and make any further changes necessary.

‘Shocking findings’
An NHS England spokesman said: “We commissioned an independent report because it was clear that there are significant concerns. “We are determined that, for the sake of past, present and future patients and their families, all the issues should be forensically examined and any lessons clearly identified and acted upon.”
It added: “The final full independent report will be published as soon as possible, and all the agencies involved stand ready to take appropriate action.”
Norman Lamb, who was the care minister in the coalition government, said the findings were shocking: “You end up with a sense that these lives are regarded somehow as slightly less important than others and there can be no second class citizens in our NHS. “The thought is just horrifying and there have to be some answers from the trust.”

Source: http://www.bbc.co.uk/news/health-35051845

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

At the time of writing this blog (Thursday, January 7, 2016) the Governors of this NHS Trust had met to discuss this report and the ‘lack of leadership’ that the report identified in relation to the trust. You can get a bird’s eye view of the meeting here (well at least an edited one):

http://www.itv.com/news/meridian/update/2016-01-05/governors-review-damning-report-over-health-trust/

 

Last night twitter responded largely with incredulity but also amazement at the lack of perceived accountability of senior management in relation to the dehumanization of people with the label of learning disabilities in the care of the trust. A response of one of the senior managers of the Trust was that their organisation was on a ‘learning journey’, responding to the report and liaising with other services and professionals in order to, one assumes, improve their service. Without getting into the specifics here, nor the names and personnel, we want to consider learning as a phenomenon, process and practice and offer some advice to them or any professional or service truly interested in changing their cultural practices:

1. Learning is a tricky idea – learning is a very contested idea especially in the field of educational studies. Learning is not simply about gaining new skills or improving one’s competencies. True learning, according to the late great critical educator Paulo Freire, can be found when one’s perspective on the world is truly transformed by encountering the world. We like this idea of learning. And we put it out there as a model of learning. We hope to see those who work with people with learning disabilities – and anyone showing a passing interest in the Mazar report – to be truly transformed in their thinking. We want them to learn again; to learn that people with the label of learning disabilities are human beings, with rights and lives that we must value.
2. Learning is political – Paulo and his comrades developed an approach to learning that they called critical pedagogy. In short this approach saw learning not simply taking place in the classroom (nor senior management meeting room for that matter) but in the wider world. To truly learn then one has to be part of the world and, crucially interested in changing the world. The Mazar report is a huge kick up the arse to anyone interested in improving the lives of people with learning disabilities. It demands not only accountability for past failings but a commitment to new ways of working with people so-labelled as equal stakeholders, full citizens and fellow human beings.
3. Learning should eradicate discrimination – no one ever knows everything nor should they ever think that they do. True learners are always modest, uncertain and questioning. But learners should always be engaged with the inequalities endemic within our society. And learners should desire an end to discrimination and oppression for example in the lives of people with the label of learning disabilities. A learning journey should involve visiting people and destinations in order to learn from examples of good practice and communities that value equity. One destination we suggest is self-advocacy; and there are many groups in the UK who can offer wisdom and advice.
4. Learning should be uncomfortable – the more we think we know then the more we feel uncertain. We find ourselves outside of our comfort zone; perhaps questioning what we thought we knew in the first place. One response to this is to find an easy answer – or a safe place – that protects us from uncertainty and makes us feel less confused. This is a mistake. Our learning journeys should push us into some difficult spaces and places. And when one finds a location really uncomfortable then perhaps now is the time to move on to another destination for learning.
5. Learning is a Human Practice – To get to this new destination, anyone wishing to genuinely learn must answer some very political questions that involve human beings and how we learn together:
   “Who am I going to learn from?”
   And “How am I going to learn?”.

These human questions are political and social because we have to recognise how the voices of disabled people and their carers have not been heard in current discourse. They certainly don’t seem to be heard anywhere near enough in the immense task of designing healthcare systems that work for the people that use them. This may seem like a task for the technocrats, and those flashy people who are great at producing organisational flowcharts and speaking inspirationally next to flipcharts – those people are no doubt useful, but the serious work of real learning happens elsewhere, other people must be listened to, involved and empowered first.

The answer to “who am I going to learn from?” must be from people who are the real experts in their own lives. This means listening to people with disability and mental health labels, with lived experience of how services succeed and fail, and to the people who love and care for them, their families. It cannot be overemphasised that the key to good services lies with listening to the people who use those services. Every layer of the organisation must be committed to learning, and involve itself seriously in listening precisely to these people, particularly and especially those formally charged with power to make change in the organisation.

The answer to “How am I going to learn?” must be thought about seriously too. Listening to learn from people requires a genuine and quite humble commitment to hear and to act on what is being heard, and services find this very difficult. It’s a process that requires building up longer term trusting relationships because learning is not shared easily or automatically. Somehow a relationship that is often characterised by mutual recrimination and suspicion has to be transformed into one where the people who matter in the process feel genuinely listened to and valued for the contribution they are making. Real listening goes far beyond patronising consultations that some bodies conduct. It to become genuine coproduction, where information is open, hierarchical positions are abandoned, and there is ‘power with’ rather than ‘power over’. A turn of phrase our Paulo would like.

Listening to and involving people must become part of the everyday life of the organisation, a habit so entrenched it seems natural. The dialogue in such coproductive spaces should be in clear everyday language that enables everyone to be included and to contribute. Time and space can be given to people who need to develop what they are trying to say. It’s a task for the whole organisation, not a little special section tasked with listening on behalf of the organisation, when the real decisions are made elsewhere.

This process of learning is the opposite of the dehumanisation revealed by the various reports and inquiries. It requires recognising people as human beings with expertise in their own lives, and on the way services impact on those lives. It requires climbing out of hierarchies and interacting in human ways with a serious commitment to listen and make change. The impact of interacting in such human ways changes the values and language of all the people involved, and we hope creates systems where human beings lives are no longer easily disregarded, because they are people we know, people we care about, people who we recognise as human in a fundamental way.

Our hunch is that perhaps in some organisations the discriminatory assumptions prevalent in society are so deeply entrenched that such fundamental commitment to change from leaders remains a pipe dream. There are two alternatives. One is to decide that such genuine learning is impossible for bureaucratic and market driven service systems and do nothing. We know that if we follow this line nothing will change.

The other is to decide to make a serious attempt at the change, and cultivate all the spaces where it can and does happen. Maybe learning won’t happen in the hopeful way we describe. We do know that when people with many different perspectives are drawn together, and they genuinely listen and learn to each other, the outcomes can be surprising.

So, we are all for a learning journey, but where do we want to go?

BigSocietyDis at the Society for Disability Studies, Atlanta, Georgia, 10-13 June

Dan Goodley and Katherine Runswick Cole gave a paper at this major international disability conference held annually in the states. Their paper was part of a panel, moderated by Mel Chen, entitled “Beyond ‘Human rights’ and ‘the Human’: Disability, (post)human and DisHuman Studies and Intimate Citizenship”. There were three papers in the panel:

Dan Goodley and Katherine Runswick Cole, “Becoming Dis/human: Thinking about the Human through Disability”
Kirsty Liddiard, “‘I’m a lie-back-and-think-of-England type of man’: Imagining the Posthuman Dis/sexual Subject”
Esther Ignagni, “Failing Domesticity: Towards Dis/parenthood”

Dan said ‘SDS is an established American conference that brings together activists, academics and artists to engage with disability issues. It was a great opportunity to work alongside Kirsty and Esther to explore the ways in which disability troubles but also desires the human – as a category and organising principle around which to consider the rights of disabled people. We had a full house for our panel and were able to share our emerging work in http://www.dishuman.com – which has extended out of our work on the BigSocietyDis project and allowed us to work with Kirsty and Esther on shared themes of self-advocacy, intimate citizenship and community & family activism’.

More details of this work can be found http://www.dishuman.com

BigSocietyDis hits Finland

Dan Goodley represented the BigSocietyDis team at an international symposium held at the University of Helsinki between the 4^th and 5^th June 2015. This event was organised by AGORA (for the study of Social Justice & Equality in education research centre, University of Helsinki) and Critical Educational Psychology Centre for the Human CEPCH (University of Sheffield).

The two event entitled ‘A global epidemic of mental ill-health? Interdisciplinary perspectives on the educational implications of reconfiguring social, economic and human crises’ brought together researchers from the Universities of Helsinki and Sheffield. Dan joined University of Sheffield colleagues – China Mills, Lisa Procter and Kathryn Ecclestone – to speak around the topics of psychologisation, disability and debility. Dan’s paper entitled ‘PRECARIOUS BODIES: THE BIOPOLITICS OF DIS/ABILITY AND DEBILITY’ considered the ways in which the politics of austerity are promoting alliances between disabled people and others ‘debilitated’ by the dance of capital and the rolling back of the welfare state.

Drawing on theories from Jasbir Puar and Lauren Berlant – as well as some recent writing in his 2014 book Dis/ability studies (Routledge) – Dan was also encouraged to think about the ways in which our BigSocietyDis partners are responding in imaginative ways to the politics of austerity. Dan said, ‘This was a great opportunity to connect with colleagues in AGORA and share our findings from our project. Too often, considerations of social, economic and human crises forget to engage with disability organisations. Our BigSocietyDis research has shown us that disability organisations lead the way in reacting to the recent austerity measures in the UK and elsewhere in the world. While disabled people risk being made ever more economically and politically vulnerable by capitalist crises, our BigSocietyDis partner organisations have alerted us to a host of imaginative practices that seek to maintain the community networks of support for people with intellectual disabilities. One way of understanding this is that disabled activists and trade unions have much in common in terms of responding to politics a ideology. The event was also a supportive space to connect with researchers at AGORA whose own work is thinking through some of these crises and pressures and we thank Kristiina Brunila and her colleagues at AGORA for the debates and discussions’.

Some photos from the event:

A link to AGORA’s website:http://blogs.helsinki.fi/agora-sje/

A link to a review by Imogen Tyler of Dan’s book – Dis/ability Studies (Routledge, 2014)

Sharing Big Society findings and Community Psychology at the University of Nottingham in Malaysia

Today Rebecca Lawthom represented the Big Society team to present a public seminar at the University of Nottingham’s Malaysia campus. The event, which was widely publicised throughout KL and Malaysia, was attended by over 30 people included academics, practitioners, NGOs (including Malaysia Care), students and members of public. The seminar entitled ‘Using Community Psychology and Disability Studies for Social Justice’ asked can we be humane in humane times? The changing times, whether austerity measures, here in the UK or globalisation more widely entail big changes for the way we think about and do research. In this talk, Rebecca presented the benefit of working with and through others in a collective approach. She drew on her communities of inquiry to help address the questions of human beings and being humane in opposition to locating ‘revolting subjects’. She used ideas of community of practice, community psychology,disability studies, and co-production to explore this. The seminar drew on research around disability and inclusion, migrant workers, and community organising:  How might we collectively think about the communities we work with and live in to secure a future with social justice? In the second part of the seminar, Rebecca presented findings from the Big Society project and concluded with a facilitated discussion around inclusion issues in Malaysia. Rebecca said ‘It was an engaged and stimulating workshop where we shared ideas around circles of support that might work well in a Malaysian context in terms of accessing existing communities of practice. This mirrored and supports discussions and shared ideas that emerged at the event on the 28th March in the University of Malaya – so it was great to see how these early points of connection were picked up on again at the end of this trip’

Meeting one of Malaysia’s most renowned disability activists

Dan Goodley and Rebecca Lawthom – from the Big Society team – had the pleasure of meeting the internationally renowned disability activist, blogger and journalist Peter Tan in Kuala Lumpur this morning. Peter’s work has been highly influential in documenting the barriers faced by disabled people in Malaysia. An introduction to Peter and his work can be found here http://www.petertan.com/blog/about-petertancom/ from which the following extract is taken:

‘Peter Tan sustained spinal cord injury at the age of 18 when he dived into a swimming pool in 1984. He has been using a wheelchair since.

Faced with physical and attitudinal barriers wherever he went, he became an advocate for an accessible and inclusive Malaysia. He is a prolific writer on disability issues in his blog called The Digital Awakening. He was trained in Malaysia, Japan and Bangkok as a peer counselor for the Independent Living Programme for People with Disabilities. This project is supported by the Jabatan Kebajikan Masyarakat Malaysia (Department of Social Welfare Malaysia) and Japan International Cooperation Agency to empower severely disabled persons to live independently in the community through self-respect, self-determination and social reformation’.

In our meeting today we discussed the impact of austerity measures on the lives of British disabled people – as revealed by our Big Society project – as well as the current pressures facing disabled people in Malaysia. Disabled people in both countries continue to face real problems in accessing their communities. Peter explained to us inaccessible experiences of public transport and public buildings that occur even in a context of anti-discriminatory legislation. The Persons with Disabilities Act was passed in Malaysia in 2008 (http://www.jkm.gov.my/images/stories/pdf/personswithdisabilitiesact2008.pdf).

However, disabled people still struggle for representation in Malaysian civil society. Peter’s work as a Disability Equality Trainer seeks to contest disablist practices through work with public bodies and private organisations. Dan Goodley had this to say about the meeting; ‘After following Peter’s blog for a number of years – and having the chance to correspond via email – it was fantastic to actually get to meet Peter today with Rebecca. His writing captures the importance of combining personal stories with political activism and we look forward to keeping in touching the future’. Rebecca revealed ‘ hearing what life is really like for disabled people as active citizens in Malaysia adds to our picture of inclusion here’.

Peter has recently been a speaker at the first international disability studies conference hosted by the Centre of Excellence for Disability Studies, UNIMAS, Kuching (http://www.coeds.unimas.my/) with whom members of the Big Society team have also previously collaborated (http://www.coeds.unimas.my/index.php/2013-07-11-06-29-23/completed-research-projects) .

Peter’s writing can also be accessed through the Borneo Post (for example, http://www.theborneopost.com/2014/11/21/remove-barriers-for-people-with-disabilities/)

New article: DisPovertyPorn: Benefits Street and the Dis/ability Paradox

New article available here: Katherine Runswick-Cole & Dan Goodley (2015): DisPovertyPorn: Benefits Street
and the dis/ability paradox, Disability & Society,
http://dx.doi.org/10.1080/09687599.2015.1008294