Big Society, Disability and Civil Society Research

Website for ESRC research project 'Big Society? Disabled People with Learning Disabilities and Civil Society'

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Improving the lives of people with learning disabilities

What can we do to improve the lives of people with learning disabilities? This question has become ever more urgent since the publication of datawhich shows that people with a learning disability are likely to die 23-29 years before their peers.  Health inequalities and social exclusion mean that learning disability has become a socially constructed life-limiting impairment.

On 5thJuly, Professor Katherine Runswick-Cole went to an event hosted by the Public Policy Exchange to speak to self-advocates, family members, academics and practitioners about recent research carried out at The University of Sheffield with people with learning disabilities: Big Society? Disabled people with learning disabilities and civil society.

Katherine spoke about the strand of the project that focused on raising the levels of employment for people with learning disabilities that currently stands at only 5.7%.  Katherine talked about the policy recommendations from the project that include ensuring that young people can keep their Education, Health and Care Plans if they move into employment before they are 25; increasing the number of supported internships available to young people and creating national standards for job coaches.  You can read full details of the policy recommendations here:

You can read the presentation here

KRC Policy Forum


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Using circles of support in transitions with young people to adulthood

Helen Smith and Katherine Runswick-Cole were invited to an event at Bents Green School in Sheffield jointly hosted with the Department for Childhood, Education and Inclusion, Sheffield Hallam University to talk about circles of support in transitions.

About thirty parents/carers and practitioners from across Sheffield attended the session.  The session began with an introduction to circles of support by Christine Towers, formerly of the Foundation for People with Learning Disabilities.

Helen introduced her work on circles of support for Community Circles, a charity which runs as a social franchise to support the development of circles in local areas.

Katherine spoke about the Big Society strand of research focusing on circles of support and how a circle had enabled one young participant in the study to transition successfully from education to adult life.

The presentations sparked a range of conversations about how people could access support to facilitate a circle to who the circle might be for – a baby, a child, a young person or a parent?CiwRj2SWsAAQK29

The organisers are going to reflect on the findings from the day and hope to learn from a circles of support approach to develop better support for young people in Sheffield.


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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.






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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.








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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











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

Support the #7Daysofaction on twitter – Monday 18th 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:

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

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.

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 18th April 2016. The press release is reproduced below.
Press Release from 7 Days of Action Campaign

Monday 18th 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 18th 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:

+++++ 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 18th April 2016. I hope you are too.

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The struggle for human rights is an international issue too!

We have been learning about the challenges facing disabled people in South East Asia. During a recent visit Dan Goodley had the pleasure to meet a number of people engaged disability issues in Singapore. These included Judy Wee (Disabled People’s Association), Lyn Loh (formerly Singapore Association of the Visually Handicapped and Disabled People’s Association), Andrew Chew (formerly Blind Sports Association of Singapore and Guide Dogs Association of the Blind), Michael Tan (former Executive Director of Singapore Association of the Visually Handicapped), Ryan IK (National Council of Social Service), Lishan Chan (mental health advocate and National Council of Social Service), May Low (Singapore Association for the Deaf), Dr Wong Meng Ee (National Institute of Education), Lu Si Yinn (disability researcher) and Professor Reuben Wong (National University of Singapore). The workshops were organised and also attended by Emily Charissa Lim (AWARE, Association of Women for Action and Research)
Dan said:
Just as welfare services are being cut for people with intellectual disabilities in the UK – under the rhetoric of ‘we are all in this together’ – Singaporean colleagues spoke to me of the challenges of living in a society that prides itself on individual self-sufficiency. Indeed, they told me about a number of recent government initiatives that are increasing support to disabled people; which struck me as ironic when, from a British perspective, disabled people are having their support networks disbanded. 

Dan was in Singapore with a University of Sheffield delegation led by the Vice Chancellor, Professor Sir Keith Burnett, that seeks to extend partnerships in South East Asia. Dan gave a public lecture on the new iHuman: The Institute for the Study of the Human which will be launched later this year, to an audience of the general public, alumni, disability activists and key policy makers and researchers on the 5
thApril at the Mandarin Oriental, Singapore.
The following day Dan travelled to Kuala Lumpur to meet with researchers and governmental officers to discuss future research collaboration around the areas of disability, work and independent living.
Follow up links:

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Big Society just got a little bit smaller …

We’re really sorry to see this fantastic initiative lose funding ….


The Big Society just got a little bit smaller

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Max Neill

We are very sad to learn that Max Neill passed away on 29th February, 2016.

As an experienced community living advisor and leader in the development of person centred approaches, Max was a much-respected member of the research team. Max’s gentle presence served always to remind us of the power and importance of connected communities.

We will miss him.

Our thoughts are with his family.