Interviews with Disabled Young People with Life-limiting and Life-threatening Impairments, and Their Parents and Carers, 2017-2020

These semi-structured interviews were collated as part of an ESRC funded project Life, Death, Disability and the Human: Living Life to the Fullest More details can be found at https://livinglifetothefullest.org. The interviews were carried out with two groups (1) young disabled people with life limiting impairments (aged mid teens to early 30s) and (2) family members and parents of young disabled people. The interviews explored many themes including impairment, education, healthcare and community participation. Throughout the interviews a strong theme emerges: that young people have aspirations and ambitions though often face disabling structures in their lives.We can gauge the values of any society by considering how it treats those people who are the most marginalised. Too often disabled young people find themselves on the outskirts of society. This is especially the case for one group of disabled young people. We know much about the deaths of young people with life-limiting or life-threatening impairments (hereby LL/LTIs) but relatively little about their lived lives. This invisibility is detrimental to their social and emotional well-being and mental health, and that of their families/carers and allies. This research seeks to forge new understandings of the lives, hopes, desires and contributions of disabled young people with LL/LTI. Our research will permit us to think differently about how society understands life and death, and will deliver forms of co-produced knowledge that will be useful to academics and to a host of civil society organisations, professionals and communities that are also seeking to value short lives and respect death as part of the human condition. Our inquiry is a flagship project of the Institute for the Study of the Human (iHuman) at the University of Sheffield (https://disabilityuos.wordpress.com). According to the national charity Together for Short Lives, LL/LTIs considerably shorten children and young people's life expectancy. There are around 49,000 children and young people with LL/LTIs in the UK, and these rates are increasing year on year. Fortunately, young people with LL/LTIs are living longer than ever before, yet we know little of their lives; particularly from their own perspectives. This lack of knowledge is due to the marked absences of this unique group of disabled young people from public imagination and broader culture. Young people with LL/LTIs have been omitted from much academic research; are seldom explicitly written into public policy; are often excluded from disability communities and disabled people's own movements; and have their voices dominated by professional perspectives within palliative (end of life) care teaching, education and training. Whilst there has been work in the palliative, nursing and medical worlds on LL/LTIs, very little of this work has included, or speaks from young people's own perspectives. Consequently, critical questions subsist around personal, relational and collective well-being. This project is timely given that our previous research showed that disabled young people and their families/carers and allies experience significant exclusion and discrimination; exclusion which is currently exacerbated through severe austerity in the UK. Therefore, with young people alongside us as our co-researchers, and working in partnership with leading disability/LL/LTI organisations (Muscular Dystrophy UK Trailblazers; Purple Patch Arts; Action Duchenne; DMD Pathfinders, Together for Short Lives, Tinder Foundation), we will explore the lives of young people with LL/LTI as they experience and understand them, with the aim of making their lives visible. Young people with LL/LTI and their families will tell their own stories through multi-modal engagement with innovative art-making and narrative approaches. Working with our Community Research Partners and Expert Impact Partners we will co-design impact activities which ensure that research findings are applied and utilised in real life settings and thus are relevant, transferable, accessible and transformative outside of academia. We propose that this impact serves to improve the social, emotional and mental health and well-being of young people with LL/LTIs, and their parents/carers and wider families, enabling them to live life to the fullest. Please see our website - livinglifetothefullest.org - and watch our short film, Living Life to the Fullest (2015).