Study title

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....