Life, Death, Disability and the Human: Living Life to the Fullest

我们可以通过考虑它如何对待那些最边缘化的人来衡量任何社会的价值。残疾青年常常发现自己处于社会的边缘。对于一群残疾的年轻人来说，情况尤其如此。我们对患有限制生命或危及生命的障碍的年轻人的死亡了解很多，但对他们的生活知之甚少。这种隐形不利于他们的社会和情感福祉以及心理健康，也不利于他们的家人/照顾者和盟友。本研究旨在建立新的理解的生活，希望，愿望和贡献残疾青年的LL/LTI。我们的研究将使我们能够以不同的方式思考社会如何理解生命和死亡，并将提供各种形式的共同生产知识，这些知识将对学术界和许多民间社会组织，专业人士和社区有用，这些组织也在寻求重视短暂的生命并尊重死亡作为人类状况的一部分。我们的调查是谢菲尔德大学人类研究所（iHuman）的旗舰项目（https://disabilityuos.wordpress.com）.According)和国家慈善机构共同为短暂的生命，LL/LTIs大大缩短了儿童和年轻人的预期寿命。在英国，大约有49,000名儿童和青少年患有LL/ lti，而且这些比率正在逐年上升。幸运的是，患有LL/ lti的年轻人比以往任何时候都活得更长，但我们对他们的生活知之甚少；尤其是从他们自己的角度来看。这种知识的缺乏是由于这一独特的残疾青年群体在公众的想象和更广泛的文化中明显缺席。许多学术研究忽略了患有LL/ lti的年轻人；很少被明确写入公共政策；经常被排除在残疾人社区和残疾人自己的运动之外；在临终关怀教学、教育和培训中，让他们的声音被专业观点所主导。虽然在姑息治疗、护理和医学领域已经开展了关于LL/ lti的工作，但这些工作很少包括年轻人自己的观点，或者从年轻人自己的角度出发。因此，关键问题围绕着个人、关系和集体福祉而存在。这个项目是及时的，因为我们之前的研究表明，残疾年轻人及其家人/照顾者和盟友经历了严重的排斥和歧视；目前英国的严重紧缩加剧了这种排斥。因此，与我们一起的年轻人作为我们的共同研究人员，并与领先的残疾/LL/LTI组织（肌肉萎缩症英国开拓者；紫色斑块艺术；行动杜氏；DMD探路者，共同为短暂的生命，Tinder基金会）合作，我们将探索患有LL/LTI的年轻人的生活，因为他们经历和理解他们，目的是让他们的生活可见。患有LL/LTI的年轻人及其家人将通过创新的艺术创作和叙事方式，通过多模式参与讲述自己的故事。与我们的社区研究合作伙伴和专家影响合作伙伴合作，我们将共同设计影响活动，确保研究成果在现实生活中得到应用和利用，从而在学术界之外具有相关性，可转移性，可访问性和变革性。我们建议，这种影响有助于改善患有LL/ lti的年轻人、他们的父母/照顾者和更广泛的家庭的社会、情感和心理健康和福祉，使他们能够充分享受生活。请访问我们的网站——livinglifetothefullest.org——并观看我们的短片《充实生活》（Living Life tothefull, 2015）。

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).