Questions Worth Asking: Illness, youth and legacy

Image of a question markLast week Ruth Spurr, who is part of Living Life to the Fullest’s Co-Researcher Collective of disabled young researchers, spoke at an event called, Questions Worth Asking, hosted as part of the Speen Festival, 2019.

The event centred on a series of speakers answering a key question related to their lived experiences. The question Ruth answered – to an audience of over 150 people – was, What do you do when your full time job is coping with a life threatening illness? 

You can watch Ruth’s talk on YouTube here.

This question is really prevalent in the lives of disabled young people living with life-limiting and life-threatening impairments (LL/LTIs). The lived realities of illness, progressive conditions, and regular hospitalisations and appointments is something that young people routinely negotiate in their everyday lives.

Ruth’s talk was powerful in inviting the audience into her experiences – she articulated messages of determination, hope, vulnerability and her own approaches to managing her feelings towards death, dying and fragility.

In Living Life to the Fullest, through our interviews with young people living with LL/LTIs, we found that death and dying was something very important to speak about. All of the young people we interviewed spoke of a strong desire to live life to the fullest, despite the possibilities of shortened life expectancies. There was a consciousness to wanting to “cram” life in; to make the most of life. Some told us that they doubted health professionals’ perspectives about life expectancy and that “goal posts” about life expectancy were often moved by health professionals as young people aged. For some young people, this meant living in a ‘liminal’ space where they had little knowledge of how long their lives would be. For some, this eventuality impacted life planning, particularly their thoughts about having a family. However, importantly, legacy – being remembered and leaving something to the world – was very important to most of the young people we spoke to. Young people wanted to be remembered by family,  friends, and their communities, and often take different approaches to legacy-building.

Speaking about the event, Ruth said, “I was really nervous but I’m really proud of my speech and at the end I got a standing ovation from the crowd which I wasn’t expecting and nearly brought me to tears! I was so overwhelmed but so overjoyed too. I love public speaking so much, it’s one of my biggest passions as well as grasping opportunities and living life to the full and along the way spreading happiness, love, inspiration and the little joy of appreciating the little things we can in life to all those I can around me”.

Click here to go to Ruth’s brilliant blog, Ruth’s Bucket List: A Spoonie’s Journey Through Life.

We are writing a book!

Living Life to the Fullest postcardThe Living Life to the Fullest project is really proud to announce that we’ve just signed a book contract with the publisher, Emerald. Excitingly, we are writing the book – Living Life to the Fullest: Disability, Youth and Voice (working title) – as a team. Our project academics and our disabled young co-researchers in The Co-Researcher Collective will collaboratively write the book together. In Autumn 2019 we will begin writing together in a residential Writing Retreat.

It is routine that children and young people remain excluded from key parts of the research process; namely the writing up of findings and publishing. We want to be explicit here, and state that, like other written outputs from our project (Liddiard et al. 2018; Whitney et al. 2019), including journal articles and reports, our proposed text will be co-authored as a research team. From our knowledge, this has never been done before in the context of coproduction nor in the fields of disability, childhood and youth studies. We believe that this will not only improve the relevance of the book, but broaden its potential readership beyond a standard academic text; for example, to disabled young people, their families and allies, and the professionals who work with and for them.

In terms of the proposed book’s content, we include the disability and youth politics at the core of our research: accessible theory and theorising; coproduction methodologies that value disabled young people’s lives, perspectives and contributions; and our commitments to, and new knowledges of, disability arts and culture as spaces of emancipation and empowerment. However, we also draw upon the facets of life most important to our co-researchers and our core participants – disabled children and young people and their families. To summarise these briefly here, these include: i) critical perspectives on care and caring and the relationships between animal, human and machine; ii) youth, virtual lives and digital selves in an Internet Age; iii) experiences of time, ageing and re-imagining future in the context of short/er lives; iv) faith and spirituality and their relationship to disability and short/er lives; v) feelings towards and experiences of death and dying; and vi) sexuality, body image and self in youth. While these thematic spaces are deeply theoretical and political, we will keep debates accessible through drawing upon the everyday lived experiences and stories of disabled young people and their families. In this vein, our book will be accessible, relevant, meaningful and, most importantly of all, will bring young people’s lives and perspectives to the fore.

In addition, our co-authored text will articulate and critically explore the key findings of our project – what disabled children and young people living with life limiting and life threatening impairments (LL/LTIs) feel and say about their lives and futures. We hope it will also contribute to prolific contemporary political and theoretical debates about life, death and the human in an age of global precarity and austerity. The book is due to be published in Spring 2020 – as ever, we will keep you posted as it develops!

Project Research Kirsty and Co-Researchers Katy and Sally at the Analysis Retreat

Project Researcher Kirsty and Co-Researchers Katy and Sally at the Analysis Retreat, May 2019

RSPCA Honour for Ethan!

Sally, Ethan, comedian John Bishop and Love Island’s Eyal Booker at the ceremony. Photo courtesy of the RSPCA

The Canine Partner of our co-researcher Sally Whitney has received an RSPCA Honour. Last month, Sally and Ethan attended an award ceremony in London where Ethan was awarded the Amazing Animal Award – recognition for an animal “who has cared for and shown compassion to a person and made a difference to their life.”

Sally said, “It is fantastic that the RSPCA have recognised the life-changing care that Ethan and all assistance dogs provide for young, disabled people. This honour highlights how transformational receiving care from a canine can be and show cases the extraordinary relationships that can result.”

Sally is leading a key Living Life to the Fullest impact project – The Canine Care Project. In collaboration with Canine Partners, a registered charity that partners specially trained assistance dogs with disabled people, in this small impact project we will evidence and quantify the benefits of assistance dogs for disabled young people with LL/LTIs. We are doing so because our preliminary project findings have emphasised the benefits of assistance dogs for disabled young people living with life limiting and life threatening impairments (hereby LL/LTIs). Specifically, our focus in Living Life to the Fullest has developed from hearing young people’s stories about their relationships with their assistance animals, and the meaning this form of care and support has in their lives. To give some examples, young people’s stories have emphasised: (i) the positive emotional impacts of this form of support; (ii) the emergence of new intimacies between humans and animals; (iii) the ways in which assistance animals contribute to the building of positive identities and futures; and (iv) how they can transform the social lives and experiences of disabled young people with LL/LTIs.

To learn more about The Canine Care Project please see here.

Congratulations Ethan!

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