Travels with LB’s flag

Members of the research team, Dan Goodley (Sheffield) Katherine Runswick-Cole (MMU) and Toby Brandon (Northumbria), have been travelling, sharing findings from the project and learning about the lives of people with learning disabilities in the places we’ve travelled to.

As well as sharing our research findings, we’ve also been sharing #JusticeforLB. As many readers of this blog will already know, Connor Sparrowhawk, known affectionately by his family as Laughing Boy (LB), was a fit and healthy young man who had a learning disability and epilepsy and was left unsupervised in a bath in a National Health Service Assessment and Treatment Unit; he had a seizure and drowned. An independent inquiry found that Connor died a ‘preventable death’.

Connor drowned on 4^th July, 2013, just a few weeks after this research project started. The over arching question for our project was how are people with learning disabilities faring in a time of austerity, or economic cuts? And there, just a few weeks in, was a deeply shocking answer. A campaign for justice for LB has evolved over the last two years. You can see the campaign aims in detail here: http://justiceforlb.org/what-is-justiceforlb/ and members of the research team have been playing their part in campaigning for justice for LB and for all people labelled with learning disabilities during the project.

Just over a year ago, Rebecca Lawthom (MMU) had the inspired idea of making a justice flag for LB and of taking it to the music festival at Glastonbury in 2014, it made a return journey in 2015.   You can read about the LB flag at Glastonbury here: https://107daysofaction.wordpress.com/2015/06/30/week-14-back-to-worthy-farm-to-reclaim-our-humanity-justiceforlb-and-the-productive-potential-of-debility-politics-107days/

So, as we set out to visit Australia and New Zealand this year, we wanted to take the flag with us and to share LB’s story and to get international support for the campaign.

In this blog, we want to share some of the reactions we had when we talked about LB under the banner of the flag.

On 31st July, 2015 we delivered a lecture Becoming Dishuman: re-thinking civil society through disability. The lecture was 3rd Annual Trevor Parmenter Lecture The Centre for Disability Studies, The University of Sydney, New South Wales. An audience of disabled people, family members, academics and practitioners attended the lecture. When we spoke about LB’s story, we were greeted with a collective sharp intake of breath and the look of horror on people’s faces – a reaction repeated again and again on our trip. People wanted to know more about LB and to understand how it could have happened – we struggled to answer.

On 3^rd August 2015, Dan, Toby and Katherine attended a symposium Understanding and contesting institutional disablism at The University of Sydney, New South Wales. Again the audience reacted with shock and members of the audience tweeted throughout the day using the #justiceforLB. One person contacted us afterwards to say that she had never had a tweet re-tweeted so many times, she was blown away by the power and compassion of the social media campaign.

On 5th August, 2015 at the Disability, Austerity, Resistance Seminar at the University of New South Wales, Australia, several members of the audience already knew about JusticeforLB. They too were shocked, horrified and angry but inspired by the international collective action that was driving the campaign, and keen to join and to harness such activism in Australia.

On 6th August, 2015, we told the LB story again at The Value of Self Advocacy Seminar, Centre for Disability Studies, The University of Sydney. As we took a breath at the end of telling the story, one of the self-advocates in the audience called out “That’s disgusting!”. Disgusting indeed. She talked to us afterwards; she knew what it meant to be institutionalized and how important it is to end institutionalization in all its forms.

As Katherine travelled on alone to New Zealand, her first meeting, on 10th August, 2015, was with People First, Dunedin. Their reaction was of anger, shock and an overwhelming desire to show their solidarity with the Justice for LB campaign. One of the self-advocates told Katherine that she knew about epilepsy as she lived with it herself; she knew how important it was to take care.

On 11th August, 2015 at the Becoming a researcher-in-residence (or the problem with coproduction) seminar at the department of Education, the University of Otago, Katherine spoke again about Justice for LB. Again people had heard the story, they knew about the campaign, even in deepest, darkest (coldest) Dunedin, on the other side of the world. People stood with the flag and they stood with Justice for LB.

In the evening, Katherine met the Family Network, Dunedin, a group of parents of disabled children. They didn’t know the story but they understood it straight away, as Katherine was talking one of the members of the group googled #justiceforLB and exclaimed “it’s all over the internet! It’s massive!”. Yep, massive indeed!

Finally, Katherine met the Disability Rights Commissioner for New Zealand, Paul Gibson. Over lunch, Katherine told the story and asked would he be happy for her to put up the flag at the lectures they were delivering later that day? He agreed straight away. A disabled person and long-standing advocate for disabled people, Paul didn’t need persuading to support #JusticeforLB. That evening at the lecture a group of hands hold the flag – a picture of collective action and solidarity on the other side of the world.

Thinking back about our experiences of telling the story over the last couple of weeks, a few things strike us. First, we’ve never had to explain the story twice. People understand; they ‘get it’ straightaway. When there is confusion, it is because people are struggling to understand how it could have possibly happened. They know what happened was wrong, they understand that LB’s death was a preventatble death and it should never have occurred.

Second, there has been an overwhelming sense of solidarity and connection with the people that we’ve told. Geographical distance makes no difference to the shock, horror and outrage, as well as to the commitment to change, that people feel.

We’ve been overwhelmed by the support people have shown for the campaign for justice, miles away, for a precious young man.

#JusticeforLB

#Justiceforallthedudes

Katherine & Dan

12th August, 2015: Public lecture with Paul Gibson, Disability Rights Commissioner, New Zealand.

You can download the presentation here:NZ public lecture

Katherine was delighted to be asked to share a platform with Paul Gibson, Disability Rights Commissioner, New Zealand at the University of Otago, Dunedin.

Katherine presented from her research Big Society? Disabled people with learning disabilities and civil society. Her paper co-authored with Dan Goodley Becoming dishuman: re-thinking social policy through disability outlined a dishuman approach to social policy – one in which disabled people play are at the centre in shaping social policy. Drawing on examples from their research in England, they described how disabled people are troubling, re-shaping and extending what it means to be human. They concluded the paper calling for

• a time when any thought about the human in social policy has in mind what disability does to it
• that when thinking about the human this will always involve thinking about disability.

Paul Gibson spoke next. He set out his vision for a Centre for Disability Studies at the University of Otago, building on the work of the Donald Beasley Institute and creating a disability plan across the university. Paul called for increased representation of disabled students, staff and governors and for the lived experience of disabled people to be built into the curriculum. Focusing on a human rights approach to disability politics, Paul called for research to play a pivotal role in making disability rights real for the diversity of disabled people. He concluded by asking the audience to challenge their own prejudices, and not limit their own hopes & aspirations and those of others.

11th August, 2015: Meeting the Family Network, Dunedin

Katherine was very excited to be able to meet with other parents of disabled children and members of the Dunedin Family Network https://www.facebook.com/TheFamilyNetworkInc?fref=ts.  The Family Network is a support network for parents of disabled children offering information and advice in Dunedin.

Discussions ranged from the challenges families face in finding inclusive schools in the area to talk about the difficulties in transition from children’s to adult services.

Katherine shared examples from the UK and from the current project about some of the challenges and opportunities for disabled children and young people and their family carers.

Katherine said: “Both personally and professionally, I was delighted to be able to meet with family carers in Dunedin and for us all to share our experiences of raising disabled children. Sadly, there were many parallels, parents ‘fights’ in Dunedin are very similar to those of parents in England. I would also like to thank the parents for offering their support for #JusticefoLB and for their shared understanding of the aims and values of the campaign.”

11th August, 2015: Becoming a researcher-in-residence (or the problem with coproduction)

Katherine Runswick-Cole (MMU) was welcomed to the Department of Education at the University of Otago where an audience of students and staff gathered to listen to her talk about participatory research and the limits and possibilities of coproduction.  Katherine also spoke about the impact agenda in the UK.

Katherine’s presentation sparked discussion of the possibilities and challenges of coproduced research in New Zealand and the UK.  Discussion about how to ensure that research findings reach audiences outside the university also followed, alongside discussion about different approaches to research dissemination and the requirement in the UK to develop pathways to impact.

Katherine said: “Many thanks to the staff and students who attended the session today and to Gill Rutherford, in particular, for her organisation.”

You can download the presentation here: NZ becoming a researcher in residence

Thanks also to everyone for showing their support for #JusticeforLB (justiceforLB.wordpress.com)

10th August, 2015: Meeting #PeopleFirst, Dunedin, New Zealand

Katherine Runswick-Cole (MMU), a member of the research team, met with People First, Dunedin, Australia.  People First New Zealand was set up in the 1980s and has a long history of promoting self-advocacy.  You can find out more about the organisation here: http://www.peoplefirst.org.nz/who-what-where/who-is-people-first/

The meeting was an opportunity for Katherine to share research findings from the project and to talk to members about the state of play for self-advocacy in the UK.  She also learned about the opportunities and challenges facing self-advocates in New Zealand.  Discussion ranged from talking about opportunities for open employment, to the role of self-advocacy and the opportunities for community participation in New Zealand and the UK.

Katherine also spoke about political activism in the UK and the on-going #JusticeforLB campaign (justiceforLB.wordpress.com).

6th August, 2015: The Value of Self Advocacy, Centre for Disability Studies, The University of Sydney

Today, Dan and Katherine joined self advocates at the University of Sydney’s Centre for Disability Studies Professor Patricia O’Brien began the day by welcoming the fifty delegates from across New South Wales to the event. Audience members included: self advocates, family members, practitioners and academics.

The Inclusive Research Group at the University of Sydney’s Centre for Disability Studies began the presentations with a presentation “What does the NDIS mean to me?”. The National Disability Insurance Scheme (NDIS) is currently being rolled out across Australia and will see a shift away from public funded services for disabled people to the introduction of individualized plans and budgets. The Inclusive Research Group spoke about the research they have don with people with intellectual disabilities and their concerns about a lack of accessible information, uncertainty about how the scheme will work and whether there will be any funding for self-advocacy under the NDIS. However, a member of the audience, who was part of a pilot of the NDIS, explained that he felt he had a good plan and a good life.

Next up, Dan Goodley, The University of Sheffield, UK, and Katherine Runswick-Cole, Manchester Metropolitan University, UK, talked about self-advocacy in the UK. Their presentation described the threats to self-advocacy in the UK as well as the opportunities self-advocacy brings.

The session ended with a world café where participants reflected on why self-advocacy is important to them and how this can be supported.

Katherine said: “ We were absolutely thrilled to be able to spend time in Sydney learning about self-advocacy and sharing the experience in the UK.   This visit was particularly timely given the move to personalization in Australia. We hope that people in Australia will learn from the UK experience and avoid some of the pitfalls that have emerged.”

You can download Dan and Katherine’s presentation here: Big Society July, 2015

5th August, 2015: Disability, Austerity, Resistance Seminar at the University of New South Wales, Australia

Members of the research team Dan Goodley (Sheffield) Toby Brandon (Northumbria) and Katherine Runswick-Cole (Manchester Metropolitan) visited the University of New South Wales today to take part in a seminar session focused on disability and austerity and the possibility for resistance.

Toby Brandon began the session with his presentation Hating Disability and Austerity in the UK. Toby explored the relationship between austerity and disablist hate crime in the UK. He described the increased querying of disability identity, alongside the rise of ableism and sanism. The retraction of welfare as part of a neo-liberal agenda has created new ways to exclude disabled people. Toby drew upon the voices of disabled people and developing theory within disability and mad studies to explore how to frame, examine and challenge these new threatening discourses.

Dan Goodley and Katherine Runswick-Cole followed Toby with their presentation co-authored with Rebecca Lawthom (MMU) Back to Worthy Farm to reclaim our humanity: JusticeforLB and the productive potential of debility politics. Dan and Katherine asked what does a politics of debility look like? How might we harness it, come together and collectively agitate around a politics of debility? Drawing on recent activism in the UK (justiceforLB.wordpress.com) to find a productive way forward in a time of neo-liberal ableism and austerity-as-ideology, they concluded by calling for a time of debility politics.

3rd August 2015: Understanding and contesting institutional disablism; a one day symposium, The University of Sydney, New South Wales

3^rd August 2015: Understanding and contesting institutional disablism; a one day symposium, The University of Sydney, New South Wales

Today, Dan and Katherine joined were joined by their Big Society team member, Toby Brandon, from the University of Northumbria and colleagues at the University of Sydney’s Centre for Disability Studies to spend the day understanding and contesting institutional disablism.

Over one hundred attendees packed into the seminar room to hear Professor Patricia O’Brien, Director of the Centre for Disability Studies at the University of Sydney, open the event with her presentation Disablism and the Shout Out Report in Australia. Patricia’s presentation outlined the findings of the Shout Out report and described the lack of services and support as well as work force issues, housing, poverty and the cost of living as well as current disability reforms, including the introduction of the National Disability Insurance Scheme.

Next up, Dan Goodley, The University of Sheffield, UK, and Katherine Runswick-Cole, Manchester Metropolitan University, UK, gave a paper entitled: The Violence of Disablism in the UK. Their presentation described the multi-faceted nature of the violence in the lives of disabled people in the UK. Their analysis resists attempts to put the problems of violence back onto disabled people or on a ‘few mindless individuals’ and to focus on the real, psycho-emotional and systemic aspects of the violence of disablism.

Dan and Katherine’s presentation was followed by Dr Gabrielle Drake, Director of Academic Programs, Social Work and Community Welfare, University of New South Wales. Her talk, Disablism and homelessness in Australia, described the persistence of homelessness in the lives of disabled people in Australia.

Next members of the Inclusive Research Group at the Centre for Disability Studies presented Dealing with the health system from the perspectives of people with intellectual disability. The presentation reported on findings from a study that focused on the way that the United Nations Convention on the Rights of People with Disabilities is being enacted.

After lunch, Kathy Boxall, Professor of Social Work and Disability Studies, Edith Cowan Univeristy, Edith Cowan University, Western Australia, delivered her presentation Researching disability & disablism. Kathy offered a historical perspective on disability research and institutionlised disablism.

Kathy was followed by Toby Brandon, Reader in Mental Health and Disability Studies, a member of the Big Society research team from the University of Northumbria. Toby’s presentation, Disablist hate crime and civil society, described research focusing on disablist hate crime that was co-produced by members of Lawnmowers theatre company.

Finally, Paul Ramcharan, Associate Professor at the Centre for Applied Social Work, RMIT University presented Views of people disability and family carers to restrictive practices.

This was followed by a knowledge café facilitated by Patricia O’Brien.

31st July, 2015: Becoming Dishuman: re-thinking civil society through disability, 3rd Annual Trevor Parmenter Lecture The Centre for Disability Studies, The University of Sydney, New South Wales

31st July, 2015: Becoming Dishuman: re-thinking civil society through disability,  3rd Annual Trevor Parmenter Lecture The Centre for Disability Studies, The University of Sydney, New South Wales

Dan Goodley, The University of Sheffield, and Katherine Runswick-Cole, Manchester Metropolitan University, were delighted to deliver the 3^rd Annual Trevor Parmenter Lecture at the Centre for Disability Studies at the University of Sydney. Trevor is currently Emeritus Professor in the School of Medicine at the University of Sydney; Honorary Professor in the Faculty of Education and Social Work, Honorary Professor in the Faculty of Health Science at the University of Sydney and Adjunct Professor in the School of Rural Medicine at the University of New England. Trevor has a distinguished international career in the field of disability studies and is a Past President of the International Association for the Scientific Study of Intellectual Disabilities (IASSID). He is also renowned for his work associated with bridging the gap between academic practice and the self-advocacy of people with intellectual disabilities (the preferred term of Australia).

Dan and Katherine delivered their paper “Becoming Dishuman: re-thinking civil society through disability.” In their presentation they set out to consider how dis/ability might offer the possibility to re-think civil society concerns including: autonomy, independence, advocacy, politics and family. Drawing on their recent research project: Big Society? Disabled people with learning disabilities and civil society, Dan and Katherine explored the possibilities offered by disability to trouble, reshape and re-fashion notions of the human.

An audience of 60 people made up of disabled people, activists, academics, practitioners and family members attended the lecture.

The discussions that followed focused on the implementation of the National Disability Insurance Scheme (NDIS) and the overlaps and divergence from the personalisation agenda in the UK. Dan and Katherine were also asked about the future of circles of support and how these can be developed and sustained in the UK and in Australia. There were also questions from audience members about the theoretical development of a ‘dishuman’ approach to disability studies and how this might impact on the lives of disabled people and social policy.

Dan Goodley said: “Katherine and I were honoured to be invited to present at the Trevor Parementer Lecture. This was a fantastic opportunity of us to share our recent research but also to learn about the changes in the Australian context in a time of austerity.

You can down load Goodley, D. and Runswick-Cole, K. (2014) Becoming dis/human: Thinking about the human through disability, Discourse: Studies in the Cultural Politics of Education here: http://www.mcgill.ca/igsf/files/igsf/becoming_dishuman_copy-libre.pdf

Big Society down under – supported by the ESRC and the WUN Mobility Research Programme

Over the next week, members of the Big Society and Dishuman research team are in Australia and New Zealand to share the work of the project with colleagues in self-advocacy organizations, universities parents/family carers and other allies to disabled people. Dan Goodley’s visit has been funded, part by the WUN Research Mobility fund, and both Dan and Katherine Runswick Cole’s visit continues to be supported by the funding of the Big Society project by the ESRC.

Dan’s WUN Research Mobility Programme Project is entitled ‘Promoting critical disability studies and participatory research: International connections’ which brings together Disability Studies at the University of Sheffield and the Centre for Disability Studies (CDS) at the University of Sydney. Over the next couple of weeks Dan will be working with Professor Patricia O’Brien (director the CDS at Sydney) on a number of collaboration symposia, seminars, conferences and research workshops. These activities will support the two universities to lead a collaborative pan-national research bid on ‘Institutional Disablism’. The two universities are also joined by Big Society colleagues Katherine Runswick Cole (Manchester Metropolitan University) and Toby Brandon (Northumbria University) as well as colleagues Kathy Boxall (Edith Cowan University) and Paul Ramcharan (RMIT, Melbourne) who will join the team next week.

Dan said, ‘thanks to the funding by the WUN Mobility Research Mobility Programme’ this has allowed me to come over to Sydney to collaborate with Professor O’Brien, Katherine and other colleagues to share research findings around understanding and contesting institutional disablism. The larger objective is to devise and submit a research project that will seek to challenge institutional abuse in and across the UK and Australia. Patricia and I have put together a programme of work that not only seeks collaboration with universities but also draws on the innovative activist practices of self-advocacy groups and allies of people with learning disabilities who are dealing with disablism in a time of austerity. This feeds also into our Big Society project which is identified not only the precarious position of disabled people in these austerity time but also has highlighted imaginative responses of civil society’.

The first event, 30^th July, 2015: Critical disability studies in the UK and Australia: Making Connections, The Centre for Disability Studies, The University of Sydney, New South Wales brought together over twenty disability studies academics came together to talk about the state of play for critical disability studies in the UK and Australia. Colleagues came from as far away as Japan and included people affiliated to both the University of New South Wales and The University of Sydney as well as activists and practitioners in the field. The project team was keen to visit the Centre for Disability Research at the University of Sydney as the Centre has a long tradition of working in coproduction with disabled people in carrying out research. The presentation sparked a variety of discussion points including issues of the institutionalization of disabled people in Australia and the UK, as well as shared questions and concerns the about self-advocacy in both contexts. One recurring discussion was the importance of the emergence of dis/ability, crip, Global South and Ableist studies. You can download the presentation here: disentangling disability studies.

Please keep checking our blog for details of the other events