Disability, Youth and Leadership: #EveryoneBelongs

Everyone can make a difference: Image courtesy of Emerald Publishing

Image courtesy of Emerald Publishing

The Living Life to the Fullest Project is really proud to have collaborated with the publisher Emerald on its celebrations for International Day of Persons with Disabilities (IDPD) 2019. You can access this collaboration here.

Since 1992, the International Day of Persons with Disabilities (IDPD) has been annually observed on 3 December around the world. The theme for this 2019 IDPD is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.

The centring of disability and leadership in this year’s theme means a lot to us as a Project Team made up of disabled young co-researchers and university researchers. We distribute leadership across our project, making space for disabled young people to become leaders of the research process in ways that are important to them.

Have a watch of our film, made by our co-researchers, to learn more about this distributed model of leadership.

As part of our IDPD celebrations, Living Life to the Fullest co-researcher, Sally Whitney, has co-produced a podcast with Emerald about her experiences of researching on the project. You can listen to the podcast here, or read the transcript here.

Sally said, “…having worked on the topic of disability and researching disability and hearing from other young disabled people has helped me get more of an insight into my own disabled identity. I now consider things in a different way that I wouldn’t have before. The young people that we’ve interviewed, the papers that we’ve written and the conclusions that we’ve come to have actually reflected back on to me and onto my thinking and how I feel about myself as a disabled young person. It’s just been incredibly empowering to be working on papers with academic professionals who’ve been in the field for so long. We’ve published papers in journals. I’ve written a paper which has also been published. I’m now co-leading an impact project on the topic of how assistance dogs help transform the lives of young disabled people. It’s a topic that I feel incredibly passionate about, having had the experience of having a wonderful assistance dog in my canine partner Ethan. I’m so excited to be leading on that and to be doing more research into it. We’re now writing a book which is amazing. I can’t believe that I’m in the situation where I’m helping write a book… It’s just incredible that I have been welcomed into the team and that I’m coproducing. I’m co-producing research in the field of disability and it’s fantastic.”

The below are also available as part of Emerald’s IDPD 2019 celebrations:

  • Podcast: “The Co-researcher’s Perspective” with Sally Whitney, co-researcher on the University of Sheffield project ‘Living Life to the Fullest’
  • Podcast: “Disability, Community and Inclusion” with Wendy Uttley, Down Syndrome Training and Support Service
  • Blog: “Participatory Design with Autistic Adults” by Marc Fabri, Leeds Beckett University
  • Blog: “Chronically Angry” by Alex Franklin, UWE
  • Blog: “Independence, interdependence, and the community” by Mukta Kulkarni, Indian Institute of Management Bangalore, and Eddy Ng, Bucknell University
  • Blog: “Transforming Classroom Practices for Learners with Disabilities” by Jeffrey Bakken, Bradley University
  • Lots of free papers from a range of subjects
  • Details of our latest opportunities to publish

The Living Life to the Fullest Project Team is currently writing a book that will be published by Emerald in 2020. Follow our blog to keep up-to-date on its progress.

 

 

Working the edges of Posthuman Disability Studies in Toronto

Image of a slide of Katherine's talkDuring her recent trip to Toronto, Canada, Living Life to the Fullest researcher Professor Katherine Runswick-Cole, (of the School of Education and iHuman at the University of Sheffield), delivered a lecture at Ryerson University. 

Drawing on work with colleagues Dan Goodley and Kirsty Liddiard and the Co-Researcher Collective made up of Sally Whitney, Lucy Watts, Ruth Spurr, Carrie Aimes, Emma Vogelmann and Katy Evans, Katherine spoke about the project, Living Life to the Fullest: life, death, disability and the human.

Katherine outlined the ways in which the project has used the principles of coproduction from research design to dissemination of findings and the impact that this has had on the research project.

Katherine said: “The Co-Researcher Collective has deeply influenced the way we do research. They have taught us how to do research differently, including using different methods and pace.  The audience in Toronto was very interested in the details of how we do this.  They asked questions about the ethics and the practicalities of this kind of research, including the use of online methods. It was a real privilege to be able to present the work at The School of Disability Studies at Ryerson, which is internationally known for its disability scholarship and activism.”

ESRC Festival of Social Sciences 2019!

We are really pleased to be hosting an ESRC Festival of Social Sciences event again this year. Our event – Creativity and Co-Production: Possibilities for Research – will take place on Tuesday 5th November 2019 from 2.00pm – 4.00pm at The Circle, Sheffield.

Excitingly the event is co-hosted by our Student Collaborators from Greenacre School, Barnsley, who we have been working with since March on ways to make research accessible to all children and young people.

Through the Festival of Social Science, the ESRC aim to:

  • Encourage, support and create the opportunity for social science researchers to engage with non-academic audiences
  • Promote and increase awareness of the social sciences and ESRC’s research
  • Promote and increase awareness of the contributions the social sciences make to the wellbeing and the economy of the UK society
  • Enable the public to engage with social science research
  • Engage with teachers and young people and to raise their awareness of the social sciences.

You can read more about the Festival here.

In this lively and interactive event, you can learn about the politics and practicalities of researching with disabled young people from disabled young people themselves. We will launch our Living Life to the Fullest Co-Production Toolkit – an invaluable resource that will guide you in innovative ways of working in collaboration with disabled young people, whether you are a researcher, professional, practitioner or student. The event will include short and creative presentations, group discussion, and a Q&A, as well as showcasing young people’s artwork from across the project.

To book your place, please click here!

Accessibility

  • Wheelchair accessible venue
  • Hearing loop
  • BSL interpreters
  • Accessible toilet

If you have any questions about access, please don’t hesitate to email k.liddiard@sheffield.ac.uk

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.