9: Desiring Life and Living with Death

This chapter was always going to be one of the hardest to write. Throughout the project, disabled children and young people living with life-threatening and life-limiting impairments (LL/LTIs), and with shortened life expectancies, have readily emphasised their human worth, value, and desire for the future – regardless of how long these futures might be. Moreover, they have done so in disabling cultures that routinely deny them opportunity, access, and expectation. Young people have also stressed the ways in which they routinely thrive and strive in often difficult circumstances. Death and dying have, understandably, been difficult topics to approach in a project that focusses on affirming the value of and joy in the lives of disabled children and young people. We’ve talked about emotional work and labour (Hochschild, 1983) throughout this book – the notion that feeling and processing emotion, both internally on the self and on the surface, is a form of affective work. We reiterate it again here because talking about death and dying as a team (while living short/er lives), and also with our participants, was undeniably a space of extensive emotional work. Understandably, we found that in our interviews with young people there was a lack of explicitness in talking about death and dying. In our Analysis Retreat, we reflected upon why this was, and realised that it was the result of our tentative questioning: we had been afraid of approaching death and dying in our conversations with disabled young people.