Participation for all

Image of the view from the Eiffel Tower

View from the Eiffel Tower

Professor Katherine Runswick-Cole has just returned from the European Academy of Childhood Disability: Innovation for participation Conference 23rd – 25th May, 2019 in Paris.

Katherine was invited to present as part of an international panel including: Dr Tillie Curran, Dr Marisol Moreno Angarita and Emeritus Professor Don Wertlieb, who are all members of the international research management group for The Inclusive Early Childhood Service System Project based at Ryerson University, Canada. Dr Kathryn Underwood leads the project; she also spoke on the panel. Their presentation, A Theoretical and Methodological Basis for Early Childhood Intervention, focused on the importance of centering the concerns of children and families in research about their lives.

Katherine spoke about current research she is working on with the Co-Researcher Collective and colleagues in The School of Education, Kirsty Liddiard and Dan Goodley. Living Life to the Fullest: life, death, disability & the human draws on arts-informed methods and is being carried out in co-production with young people.

Katherine said: “I was encouraged to attend a medical conference where the theme was focused on participation. Participation has to be understood as a two-way process. A failure to recognize this can mean that, despite the rhetoric of participation and innovation, ‘patients’ or ‘research participants’ are required to adopt professional modes of communication and engagement in order to be included. We have to shift away from the view that people lack the skills to participate in research and, instead, focus on developing researchers’ skills to ensure that they enable participation for all.”

 

 

 

 

 

 

 

A right to education for all: #SENDNationalCrisis

Placards from the SEND marchToday, Living Life to the Fullest researcher Professor Katherine Runswick-Cole spoke at one of 28 marches across the country organised by parents campaigning for better support for children with “SEND” in schools. We share her speech below.

“Way back in 2003, I began my PhD focusing on the experiences of parents who register an appeal with the Special Educational Needs and Disability Tribunal to fight for the children’s educational rights. I was driven to study by my own family’s experience of the inequality in the education system. During my study, families told me about the exclusion and isolation their children faced, the inadequate and inappropriate support provided and, in some cases, the outright disability discrimination their children were met with in schools. Then, as now, parents were campaigning, but the rise of social media means that now local groups are connected with one another in ways that would not have been possible back in 2003.

Those connections have led to 28 marches across the country organised by parents campaigning for better support for children with “SEND” in schools on 30th May, 2019. This parent-led campaign attracted national media coverage, something parents, like me, could never have dreamed of in the past.

Working with disabled children and young people, and adults in research over the last decade or so (http://doeseverychildmatterpostblair.wordpress.com; http://bigsocietydis.wordpress.com; http://livinglifetothefullest.org), the educational disadvantage and discrimination disabled children and young people face has been a constant theme.

So, I was delighted to be invited to speak at the #SENDNationalCrisis rally in Leeds.

This is what I said …”

We’re here because the education system is broken.

And this broken system is breaking our children.

Too often the system sees our children as difficult to teach and as costing too much.

Our children are not the problem. The system is the problem.

The system has been underfunded and undervalued for years. And the results for our children have been catastrophic.

Our children are sent into isolation booths in schools.

Our children are 6 times more likely to be excluded than other children.

Our children are more likely to be bullied and abused in schools.

When they grow up our children are less likely to have a job, and our children are less likely to have their own front door.

As adults they will face health and social inequalities that put them at risk of early death.

Education is where this isolation, exclusion and discrimination begins.

When my son was little, I thought that the government didn’t know what life was like for disabled children and their families.

I thought that things would not be that bad if people knew. I thought that all I had to do was tell people and that things would change.

I was wrong, they already knew, and they still do know.

Despite spending millions on ‘reform’, the government has failed to mend this broken system.

They have simply messed around at the edges.

An EHCP is no more than a statement that might, just might, last a bit longer.

Social care and health are still not part of plans.

Local Authorities are still both the assessor and provider of support – it is still in their interests to limit resources.

The system is still complicated and adversarial and more and more families are going to Tribunal. Families are winning at Tribunal because Local Authorities continue to ignore the code of practice, hoping they won’t be found out.

We need to set the agenda for change.

So here’s a start. Our message is this:

Our children have a right to an education, and this is a human right. When you talk about our children’s special needs, you should be talking about their rights, and rights are not optional.

Stop asking what is wrong with our children and ask instead what support they need to live well.

Assessment must be done fairly and independently.

Monitor Tribunal decisions and take enforcement action against local authorities that ignore rulings.

Hold to account Local Authorities who have high levels of families going to appeal.

To local authorities, I say:

If you cannot give meet your legal duty to every child in education in your local authority, then you must go back to central government and challenge them. You must use the law. You too must fight back.

Finally, to local and central government, I say, listen.

Listen to children, listen to their families and to disabled people, they have been telling you how to reform this broken system so that no child is excluded and no family has to fight or live in fear.

We may struggle to be heard, we may be tired but we will support each other and we will not be ignored, we will not go away….

Professor Katherine Runswick-Cole, School of Education and iHuman, University of Sheffield

Co-Researchers Published (again)!

Image of the Journal of Literary and Cultural Disability StudiesThis week we are really proud to announce the publication of an article in the Journal of Literary and Cultural Disability Studies written by two of our co-researchers, Sally Whitney and Katy Evans. Sally and Katy are part of our Co-Researcher Collective, a group of disabled young people co-leading Living Life to the Fullest.

Last September, we went to the Lancaster Disability Research Conference 2018 (#CeDR18) to host a workshop on our co-production approaches and methods in Living Life to the Fullest. Sally and Katy’s article details their experiences of attending the conference and their experiences as researchers in the project. Below we share a snippet from the article:

What Were the Aims of Attending the Conference?

Sally: My aim for the conference was to represent our project, Living Life to the Fullest, the best I could. I knew I could enthusiastically communicate my zest for the project. I also knew that the film we were showing—Living Life to the Fullest: The Co-Researcher Collective (2018)—stood for itself and that my fellow co-researchers on film were amply able to promote our project because we each believe in what we are doing.

Katy: Disability studies was always so much more than a degree to me. It was an opportunity to develop my identity as a disabled person and be proud of who I am. It was a welcome liberation after a childhood dominated by the medical model. Through disability studies, I began to accept all aspects of myself including my impairment, and that society’s reactions to it are not a personal attack on me. After graduating, I used my disability studies understanding in various jobs but missed being immersed in the research. I was also looking to develop my understanding around learning disability to enhance my current work at Changing Our Lives. In July I became a co-researcher in the LLttF project. It is really exciting to be working in collaboration with other disabled young people, each with a unique perspective and shared vision to shed light on subjects that often go unspoken about.

(Evans and Whitney 2019: 231-232)

You can access the article here. If for any reason you can’t access it, please email k.liddiard@sheffield.ac.uk

Reference

Evans, K. and Whitney, S. (2019) Comment from the Field. Journal of Literary and Cultural Disability Studies, 13: 2, 231 – 236

Acknowledgements

Our thanks go to the Journal of Literary and Cultural Disability Studies, particularly Owen Barden, Liverpool Hope University for his support through the production process.

Co-creating a Research Toolkit

Greenacre School logoOn Tuesday 7th May, Living Life to the Fullest researcher Kirsty Liddiard visited Greenacre School, Barnsley, to begin planning the Living Life to the Fullest Co-Production Toolkit. Greenacre is a local school educating children and young people aged 3 – 19 with severe and complex needs. 

Living Life to the Fullest, and its Co-Researcher Collective of disabled young people, are collaborating with Greenacre School – specifically Harry Gordon, SEN Teacher, and six Greenacre students – to co-design and create a “research toolkit”.

The Co-Production Toolkit aims to record and disseminate with others our ways of working in co-production with disabled young people in the research process. In the last decade, ‘public bodies — from non-governmental organisations (NGOs) to national charitable organisations — have begun to produce their own guidance as to how to research with children and young people’ (Liddiard et al. 2018: 2). But we have been left wondering: where are the voices and expertise of disabled children and young people?

Our ‘preliminary read of such guidance reveals disability as present primarily only through concerns about safeguarding, accessibility and gatekeeping, and as that which demands extra time, resources, and planning on the part of the academic researcher (see Bailey and others, 2014). Seldom is there any explicit focus towards disability as a worthwhile life experience and valuable lived perspective from which to contribute — a positionality readily adopted in Living Life to the Fullest’ (Liddiard et al. 2018: 3).

Kirsty spent the day at Greenacre, meeting staff and students, and sitting in on some classes. In the afternoon, Harry and Kirsty met with the student collaborators and through exploring the invention of the fingerprint, (and finger printing each other!), we had conversations about the meanings of exploration and investigation. All of our student collaborators were excited and ready to jump aboard the project!

Through the Toolkit, we want to diversify our methods and practices of co-production to a broader demographic of young people: including young people with the labels of learning disability and autism, who are routinely omitted from research process. We want to take an online and offline approach – with downloadable resources such as short films, podcasts, animations and templates co-created by our co-researchers and student-collaborators. We also want to explore the possibilities of research as a learning practice for SEND pedagogy and politics. Ultimately, we want the Toolkit to be used by youth workers, teachers, social work practitioners, academics, researchers, charities… the list is endless!

As ever, we will keep you up-to-date as we go!

To learn more about Living Life to the Fullest, or if you have any questions, please email k.liddiard@sheffield.ac.uk

References

Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (2018) ‘“I was excited by the idea of a project that focuses on those unasked questions”: Co-Producing Disability Research with Disabled Young People‘, Children and Society, 33: 2, 154-167

 

Youth, disability and employment

Quote screen: I think when you are disabled it's much more difficult to turn up and just do a week working in the office because you cant...

Participant Quote

In this brief blog post we want to share a short film made recently by the Living Life to the Fullest project.

It focuses on youth, disability and employment and draws upon the stories of disabled young people collected by our Co-Researcher Collective. In their interviews, co-researchers asked disabled young people how they felt about work and life, and what they wanted for their futures.

Please take a look at our film here and share on social media! Visit us on Twitter at @FullLivesESRC

If you have any questions about Living Life to the Fullest, please email k.liddiard@sheffield.ac.uk

“I’m me, and that’s all that matters”: Co-creating poetry with disabled children and young people

Sipho Ndlovu

Sipho Ndlovu

On 21st and 22nd February 2019, Living Life to the Fullest researcher Kirsty Liddiard, from the School of Education and iHuman, University of Sheffield, collaborated with Georgina Barney from the Attenborough Arts Centre, Stacey Curzon from Rainbows Children’s Hospice and professional poet and artist Sipho Ndlovu, University of Sheffield, to host two poetry workshops with disabled children and young people. The workshops were part of the ESRC-funded Living Life to the Fullest project, co-led by Kirsty with Dan Goodley and Katherine Runswick-Cole (both of School of Education and iHuman) and the Co-Researcher Collective.

The Living Life to the Fullest project is a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs). With children and young people alongside as our co-researchers, the project is a space where disabled children and young people can tell new stories of disability – their own stories.

The first workshop was held at the Attenborough Arts Centre in Leicester, an arts centre that prides itself on being accessible and inclusive. The second was at Rainbows Children’s Hospice, which provides care and support for children and young people with life-limiting health conditions and disabilities, and their families. The aim of the workshops was to enable disabled children and young people to tell new stories of their experiences of disability through poetry and spoken word arts.

Sipho Ndopu, a spoken word artist and poet whose work explores disability, dyslexia and difference, led the workshops. Check out his brilliant work Re-Code by Man Made Youth here and For the City’s Young here. In the workshops, Sipho worked in inclusive ways to co-create poetry with disabled children and young people based on their own lived experiences. The workshops offered quality arts engagement with inclusivity at its core. Workshops acknowledged the ways in which mainstream arts activities and spaces can routinely exclude disabled children and young people, with the aim of building bridges between accessible arts and young people who aren’t always afforded opportunities to participate.

Following some fun warm up activities, young participants were invited to explore creative responses to questions such as: How do you see yourself? What do you like doing? What brings you joy? Colourful responses were offered through drawing, poetry, dancing, iPad play, and performing for others.

Rupert age 10

Rupert*, age 10

Rachel age 10

Rachel*, age 10

Sakiya age 9

Sakiya*, age 9

Below is a poem, written in one of the workshops, by Natasha age 9,

My eyes are blue.

I’m pretty.

I’ve got long blonde hair.

I’m kind and happy.

I like myself.

Half of me is German.

It’s blurry because my eyes move.

I’m interesting.

I look like Mummy.

I look a bit like Daddy.

E is for Eggs.

Natasha, 9

 Similarly, Alex, aged 13 wrote the following poem in response to the question, How do you see yourself?

I can be funny, kind and caring

I’m crazy at times but inside I love my friends and family.

I’m grumpy sometimes but I get over it.

I can also be annoying at times but then I’m happy later on.

Like I said, I love and appreciate every minute with friends.

Alex, 13

And Sam, aged 13, wrote about the importance of intimacies with friends and family:

Sometimes I’m happy, sometimes I’m sad

I can be lazy but I do my best.

I think of others before myself, as I love my friends dearly.

 

I’m not the best at everything, but that’s fine,

I don’t need to be loved by everyone because I’m happy with who I do have.

I’m limited to what I can do because of my disability, but I keep my head high…

 

… Because I’m me, and that’s all that matters.

Sam, 13

These poems, and the many pieces of artwork created in the workshops, are powerful because disabled children and young people are rarely given space to express their thoughts, opinions and feelings, especially within the context of the arts. For us, the arts can generate a diversity of stories, countering the ‘single story’ of disability that routinely centres tragedy, particularly in the context of childhood. Thus, the arts can ‘voice another storyline’ of disability (Golden 1996: 330) – one of joy, self-esteem and creativity – centring the lives of young people with life-limiting and life-threatening impairments in this exclusion.

Moreover, in Living Life to the Fullest we consider disability arts as activism – creative storytelling with radical potential for disability rights and justice (Mingus 2010). As we found in our first Arts Retreat for young people living with life-limiting and life-threatening impairments, art making can provide a way to critically and sensitively re-imagine the future as vital, desirable and pleasurable. We’ve found through young people’s stories, that many of those living with life-limiting and life-threatening impairments are routinely denied opportunities to hope and dream ‘future’, despite the unremitting necessity to plan imposed upon them through the transition between child and adult care. The arts, when accessible and inclusive, can make space for this to happen.

Parents also came along to the workshops. At the Attenborough Arts Centre, parents commented how special the centre is as a key resource for the family – a place to come for family time “without being stared at”. Another parent said that she regularly brought her disabled child to the centre’s coffee shop because it was a rare space in which they were welcomed, relaxed, and included. These experiences emphasise just how difficult and hostile some public spaces can be for disabled children and their families – something our parent participants, who have been interviewed as part of Living Life to the Fullest, are readily emphasising in their own stories.

Excitingly, participants’ poems and artwork will now be featured in a national exhibition, Visible Liveable Lives, held at the end of the project in Sheffield City Centre. The exhibition will also be hosted online, coming soon!

To keep up with the Living Life to the Fullest project, please follow this blog! For any other questions, please email Kirsty: k.liddiard@sheffield.ac.uk

* Participant names have been changed.

References

Golden, J. (1996) “Critical Imagination: Serious Play with Narrative and Gender.” Gender and Education, 8: 3, 323–336.

 

 

Thinking through Critical Disability Studies

We are pleased to say that we have had another article published that is based on our ESRC project, Living Life to the Fullest.

Provocations for Critical Disability Studies, published in the academic journal Disability and Society, has been co-authored by Living Life to the Fullest researchers Dan Goodley, Katherine Runswick-Cole and Kirsty Liddiard along with Rebecca Lawthom from Manchester Metropolitan University.

The article explains and questions some of the theoretical principles underpinning Living Life to the Fullest as a project rooted in Critical Disability Studies. The article is open access – meaning it is free for everyone to read – and can be accessed here.

Below, you can read our abstract, our accessible Points of Interest, and an Easy Read version we have produced.

Abstract

This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Points of interest

  • This article introduces and discusses the field of Critical Disability Studies.
  • Critical Disability Studies thinking has developed in some controversial and complex ways over the years.
  • We review some of these developments and pose five questions that we think are urgently needed to be addressed by Critical Disability Studies researchers.
  • Our questions are: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability?

Easy Read

Please email k.liddiard@sheffield.ac.uk for our Easy Read version in Microsoft Word of PDF.

Easy Read JPG of our article (a PDF is available)