1: Living Life to the Fullest: Our Project

This book contains a multiplicity of voices: the voices of disabled young people, university academics and researchers and school children (specifically Chapter 8), all of whom have co-authored and contributed across chapters in order to make space for and document the human value of disability. Some of us write as disabled people. All of us write with personal experiences of disability in our families. As such, these voices have been central to the co-produced research project which sits at the very centre of this book: Living Life to the Fullest: Life, Death, Disability and the Human (ES/P001041/1; hereby The Living Life to the Fullest Project). Our project was funded by the Economic and Social Science Research Council and took place between 2017 and 2020. We tentatively began writing this book together in late 2019. Surely enough, as the Covid-19 global pandemic hit in spring 2020, and as a diverse research team working together, we began to realise this book’s newfound importance and timeliness. Disabled people and their families became some of the hardest hit through the pandemic. Since March 2020, over 127,000 British people have lost their lives to Covid-19; and two-thirds of these have been disabled and chronically ill people, with people of colour and people with learning disabilities being disproportionately affected (Brothers, 2020). Thus, we began writing with gusto: eager to claim space to amplify the lives, hopes, desires and contributions of disabled children and young people living with life limiting and life-threatening impairments (LL/LTIs). We untangle such labels through each chapter as we come together as collaborators, co-authors and co-researchers. We want to clarify early here that this book is not a uniform research text. It is far more. This book represents to us a change to the standardised ways in which research is conducted, reported and written, typically only by academics and people in positions of power. Whilst this book is a coherent and reflexive account of our key findings across the project as they relate to the lives of disabled children and young people and their families, it is also a labour of love. It is a legacy. A legacy of our project, but also of the lives of The Living Life to the Fullest Project co-researchers, most of whom are living with LL/LTIs, and who are eager to leave their mark on the world. We hope, too, that is a readable and accessible text.