Check out our co-production podcast! #CoProWeek

Living Life to the Fullest postcardThis week, the Living Life to the Fullest team is celebrating the fourth annual Co-production Week and Festival, 1 – 5 July 2019, run by the Social Care Institute for Excellence. The theme for 2019 is ‘Sharing Power’.

In celebration of this special week, which advocates the benefits of co-production and encourages people to share good practice, our Lead Co-Researcher Lucy Watts MBE has produced a brilliant podcast about the ways in which we enact co-production in our ESRC-funded research project, Living Life to the Fullest.

We centre the Co-Researcher Collective, a group of disabled young women living with life limiting and life threatening impairments (LL/LTIs), who are co-leading the project with a small team of academics from the University of Sheffield.

Check out Co-Producing Research With Young Disabled People – Episode 2, Lucy’s Light (44.51) here on Audioboom! See its blurb below:

Living Life To The Fullest: A research project looking at the lives, hopes, desires and contributions of disabled children and young people, and their families. This project is co-produced with young disabled women in the form of the “Co-Researcher Collective”, who, unlike many projects, are not just part of the project as subjects or PPI support, these Co-Researchers have been part of every aspect of the project from data collection to data analysis, as well as writing-up our work, and of other interrelated projects of the project, which include a (work in progress) co-production toolkit, an (in progress) book about our work and experiences, our blog, attending conferences, and other side-projects. In this episode, we’re joined by Dr Kirsty Liddiard of the University of Sheffield, the lead researcher, and Sally Whitney, one of our Co-Researcher Collective members, who discuss the Living Life To The Fullest project, our work, how we’ve achieved what we’ve done, and what co-production is, how it has benefitted our project, and how others can learn from what we’ve done (Lucy Watts MBE, 2019).

Feel free to tweet us at @FullLivesESRC and tell us what you think! Don’t forget to use the hashtag #CoProWeek.

Collaboration, Creativity and Complexities #CCCconf19

On Thursday 27th June 2019, Living Life to the Fullest researcher Kirsty Liddiard will be representing the team in a keynote speech at Collaboration, creativity and complexities: developing networks and practices of co-production with children and young people (#CCCconf19).

#CCCconf19 ia conference on youth and co-production hosted by the Manchester Centre for Youth Studies, the Education and Social Research Institute and the Health, Psychology and Communities Centre at Manchester Metropolitan University.

The Living Life to the Fullest project is very honoured to have been ask to keynote this importance conference. You can access the slides from our talk here.

If you would like access to the slides in alternative formats, please email Kirsty (k.liddiard@sheffield.ac.uk). Kirsty will be bringing standard and large print copies with her on the day, and we will have project postcards to take away.

Living Life to the Fullest postcard

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