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

Lead Research Organisation: University of Sheffield
Department Name: Education

Abstract

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).

Planned Impact

Theorising impact as social, cultural, political and economic change for individuals, organisations, communities and society, our impact strategy - which spans traditional, non-traditional and innovative methods - enacts impact across a range of settings and contexts: individuals and organisations; community and public; cultural and societal; practitioner and professional; policy; representational, artistic and educational; and the digital. Our project aims to value short lives and respect death through our work with disabled young people and the significant others that support them. Our project will be of relevance to civil society groups interested in humanity and the kinds of humans that are often devalued. Our commitment to meaningful impact fits the ethical, relational and political demands of high quality dis/ability research (Oliver 1992). Our key stakeholders in the research are, first and foremost, disabled young people and their families/carers and allies; but other key stakeholders extend to health, social and palliative care students, professionals and practitioners; community organisations and workers; policy makers; and academics and researchers. We are already using an 'Impact Partner Model', whereby our Research Management Team, Community Research Partners and Expert Impact Partners - and other local/national community organisations and related stakeholders - actively participate in a collectively-designed impact strategy (see Pathways to Impact). This enables Partners to take ownership of longer term key impact activities. Furthermore, our use of co-production and arts-informed methods enables an expansion of institutional meanings of impact as currently constructed academia, exploring affective/emotional, psychic, representational, artistic and educational forms of impact. Such possibilities are unique to research of this kind, whereby the power inherent to art-making can serve to empower, mobilise and politicise disabled participants (and lay audiences) as they imagine and construct new meanings of disability which run counter to dominant representations (Liddiard and Goodley, in press). To give an overview of Impact Activities in this summary, then, in the first instance we will communicate all knowledges from the research beyond the academy inter/nationally through a variety of knowledge exchange, mobilisation and public engagement activities. This is crucial in the context of disability research, whereby communicating, translating and disseminating new knowledges from research outside of the academy to disabled people, their organisations, and communities, and beyond, is politically, ethically and pragmatically important. Following this, we have co-designed with Partners four key impact activities which span a range of contexts and professional and policy practice (detailed in Pathways to Impact).

In terms of scholarly impact, research outcomes will make significant contributions to multiple bodies of knowledge, disciplines, fields of study, and methodological practices. To ensure scholarly impact we will draw on our exceptional track record of disseminating our findings across disciplines and inter/national contexts (see CVs & End of Project Report for RES- 062-23-1138). Mid to long-term scholarly impact will be made through i) knowledge transfer via the presentations at academic and practitioner conferences and events; ii) publication in leading, high impact factor inter/national academic journals; and iii) via the teaching of under/postgraduate students on psychology, disability studies, education and palliative medicine/nursing courses, managed and delivered by the PI and Co-Is and Research Management Team members across their institutions. Finally, this project will be supported by the Institute for the Study of the Human (iHuman) at the University of Sheffield as part of a wider impact strategy.

Publications

10 25 50
 
Description The initial empirical and co-produced work of the project was picked up by the BBC and showcased in their high profile BBC 1 Breakfast programme (see link below) - this programme has been picked up by associated disabled children's and palliative care organisations particularly as a positive way of capturing their practices. We have also been contacted by disability arts organisations who have informed us of how they have appreciated this workl https://twitter.com/bbcbreakfast/status/923790962152927232
First Year Of Impact 2017
Sector Creative Economy
Impact Types Cultural,Societal

 
Description Informing Research Impact and Engagement debates in Australia
Geographic Reach Australia 
Policy Influence Type Influenced training of practitioners or researchers
Impact Dan Goodley, invited International Speaker, Research Impact and Engagement Research Panel, Deakin University, Melbourne, Australia, 1-4pm, Deakin Downtown Campus, 25th July 2017 Hosted by REDI, Deakin University, Melbourne targeted invitations to industry, government and community. A 5 person panel discussed the topic of educational research impact from local, national and international perspectives. Panellists, including Goodley, shared their views on how they see research impact and engagement playing out in the current moment for universities in Australia and internationally and, more particularly, what it might take and indeed cost to know and play the 'game' better. The event was chaired by Professor Julianne Moss (REDI). This session was part of a two week Research Impact Trip organised by Deakin University's Strategic Research Centre in Education, Research for Educational Impact. Goodley's trip was organised and financed by REDI in order to support Deakin University's Research Plan by (1) Advancing the national and international standing of Deakin University and the Faculty of Arts and Education as a research leader in strategic research collaboration; (2) Growing REDI's and the School of Education's research capacity, depth and breadth by encouraging strong international research links and partnerships and (3) Engaging with industry, government and community through a series of targeted and accessible activities. The visit included Prof. Goodley working intensively with REDI, School of Education Professoriate and academic staff with specific attention to development of Early Career researchers and HDR students.
 
Description Research Impact Training for Australian Research colleagues
Geographic Reach Australia 
Policy Influence Type Influenced training of practitioners or researchers
Impact Dan Goodley, invited International Speaker, Research Impact Working Part, Deakin University, Melbourne, Australia, 1-4pm, Deakin Downtown Campus, 20th July 2017. Hosted by REDI, Deakin University. Goodley presented lessons from REF2014 in the UK to inform discussions about the new Impact Agenda of Australian Research Council. Participants - Professoriate and core members of REDI. This session was part of a two week Research Impact Trip organised by Deakin University's Strategic Research Centre in Education, Research for Educational Impact. Goodley's trip was organised and financed by REDI in order to support Deakin University's Research Plan by (1) Advancing the national and international standing of Deakin University and the Faculty of Arts and Education as a research leader in strategic research collaboration; (2) Growing REDI's and the School of Education's research capacity, depth and breadth by encouraging strong international research links and partnerships and (3) Engaging with industry, government and community through a series of targeted and accessible activities. The visit included Prof. Goodley working intensively with REDI, School of Education Professoriate and academic staff with specific attention to development of Early Career researchers and HDR students.
 
Description Design Fiction Wokrshop, Toronto, Canada 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact In July 2017, alongside international colleagues, I co-facilitated a 5-day Design Fiction workshop entitled Thinking With Our Chemical Stories, for disabled and Mad-identified artists from in and around the Greater Toronto Area (GTA). The workshop invited 5 prolific disabled Canadian artists and creative practitioners to explore a number of themes around the body, chemicals, disability, liveable lives and future - which are at the centre of Life, Death, Disability and the Human: Living Life to the Fullest (ESRC 2017). The 'Design Fictions' produced are currently being written up for publication and will be included in public displays in art spaces across Ontario, a well as eventually archived online. The aim of making design fictions public in the near future is to instigate discussions, showcase disability culture and educate and inform the public about disability and disabled people's lives.
Year(s) Of Engagement Activity 2017
URL http://ihuman.group.shef.ac.uk/thinking-chemical-stories/
 
Description Invited Keynote, Dan Goodley, 'Global Perspectives on the Disability Rights Movement: A conversation with Marca Bristo and Dan Goodley Tuesday, September 26, 2017, Access Living Address, 115 W. Chicago Ave. , Chicago, IL, 60654 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact EMICS
RESEARCH
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SEP
26
Global Perspectives on the Disability Rights Movement: A conversation with Marca Bristo and Dan Goodley
Tuesday, September 26, 2017

5:30 PM - 8:00 PM



RoomAccess Living
Address115 W. Chicago Ave. , Chicago, IL, 60654
The UIC Department of Disability and Human Development invites you to our Inaugural Albrecht Global Lecture on Disability.

5:30 p.m. Rooftop reception
6:30 p.m. Marca Bristo and Dan Goodley discuss disability rights and disability activism in the United Kingdom and United States
7:20 p.m. Gary Albrecht joins conversation

Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium and Professor Emeritus of Public Health and of Disability and Human Development at the University of Illinois at Chicago.

Marca Bristo, President and CEO of Access Living of Metropolitan Chicago, is a nationally and internationally distinguished leader in the disability rights movement, leading for over 30 years, one of the first centers for independent living in the United States.

Dan Goodley, Professor, Chair in Education and Director of Research, The University of Sheffield, is a leading disability studies researcher.

This event is made possible in part by a donation from Gary Albrecht and the following sponsors: Access Living, the Department of Disability and Human Development and the UIC College of Applied Health Sciences.

Contact Cheryl Johnson to request accommodations, ask for directions or make other inquiries.

Contact
Cheryl Johnson 312-413-1647 cherylj@uic.edu
Date postedAug 31, 2017
Date updatedAug 31, 2017
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Year(s) Of Engagement Activity 2017
URL https://ahs.uic.edu/alumni/events/global-perspectives-on-the-disability-rights-movement-a-conversati...
 
Description Invited Public Lecture and Keynote, Dan Goodley, 'Disability and the Human' HAUTE ÉCOLE DE SANTÉ VAUD, Lausanne, Switzerland, 22nd November 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact 22nd November 2017, HAUTE ÉCOLE DE SANTÉ VAUD, Lausanne, Switzerland, Dan Goodley, Keynote public lecture, 'Disability and the Human'.
Year(s) Of Engagement Activity 2013,2015,2017
URL https://medium.com/soeresearch/ihuman-in-switzerland-disability-and-human-relationships-85148108ca3
 
Description Invited Public Lecture, Dan Goodley 'Critical Dis/ability Studies: Thoughts on an Interdisciplinary Field', 21 July 2017 3.00 pm to 4.30 pm, Deakin Downtown. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Short title: Invited Public lecture
Dan Goodley presented a Public Address entitled , Critical Dis/ability Studies: Thoughts on an Interdisciplinary Field 21 July 2017
3.00 pm to 4.30 pm, Deakin Downtown.

Goodley presented a public lecture to over 100 people with many audience members from Melbourne and surrounding areas representing NGOs and practitioners.
Event details
In this free public lecture, Professor Dan Goodley (University of Sheffield) will introduce four established approaches to the study of disability, which cover the medical, moral, minority, relational and cultural models of disability. Critical disability studies is a place populated by people who advocate building upon the foundational perspectives of disability studies, whilst integrating new and transformative agendas associated with postcolonial, queer and feminist theories. Paying due consideration to four emerging approaches of critical disability studies - Crip Studies, Critical Studies of Ableism, Global South Disability Studies and Dis/ability Studies, Dan will then consider three key themes that may well shape some of the next stages of critical disability studies scholarship, research and activism: the question of the human; bodies that matter and the global biopolitics of dis/ability. Australian sign language (AUSLAN) interpreters will be available at this event.
Year(s) Of Engagement Activity 2017
URL http://www.deakin.edu.au/about-deakin/events/critical-disability-studies
 
Description Invited keynote, Dan Goodley, the Inaugural Gary Albrecht Global Lecture on Disability, at The University of Illinois at Chicago's (UIC) Department of Disability and Human Development (DHD) (26th September 2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact This was the Inaugural Gary Albrecht Global Lecture on Disability, at The University of Illinois at Chicago's (UIC) Department of Disability and Human Development (DHD) (26th September 2017); an esteemed invitation to leading international disability studies scholars.
Year(s) Of Engagement Activity 2017
URL http://ihuman.group.shef.ac.uk/ihuman-in-chicago/
 
Description Invited speaker, Dan Goodley, workshop at Erfurt University in Germany, 2nd and the 4th November 2017. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact iHuman c0-director Dan Goodley attended a workshop at Erfurt University in Germany between 2nd and the 4th November 2017. Dan was invited, along with researchers from Australia, America and Germany, to debate and discuss papers that address the study of ableism historically and sociologically.
Year(s) Of Engagement Activity 2017
URL http://ihuman.group.shef.ac.uk/ihuman-unpacking-ableism-germany/
 
Description Keynote address, Dan Goodley, 'Brexit, Trump and Posthuman disability studies', Past the Post conference: Post-inquiry in the Post-truth Era, 18-19 July, Deakin Burwood Campus. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Schools
Results and Impact Short title: Keynote address to Past the Post conference:
Dan Goodley presented a keynote to Post-inquiry in the Post-truth Era, 18-19 July, Deakin Burwood Campus. This conference included academics, practitioners, NGOS and community partners.
Conference overview: deakin.edu.au/past-the-posts.
Amidst imperatives for measurements of research impact, a 'post-truth' era has simultaneously been declared. The proliferation of 'posts' in empirical inquiry has changed what it means to think, feel and do education research, while 'post-truth' politics has raised other questions about what we do as researchers and why. These posts are theoretically complex, contentious and at times contradictory with unpredictable effects. There is a lack of agreement in how they might best be appropriated within education research. In the current climate of research inter-disciplinarity and new ways of thinking about the posts, questions of incommensurability in relation to matters of ontology and epistemology are ever-present. This conference engages in the research provocations we encounter as educational researchers when we seek to engage with the posts. It takes a broad view of what constitutes post- inquiry and how it might be understood and creatively taken up.
!
Year(s) Of Engagement Activity 2017
URL http://deakin.edu.au/past-the-posts.
 
Description Presentation/talk/teaching for Sheffield Hallam Students 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact 150 students attended/accessed my guest lecture - Should we include them? Researching Disabled Childhoods - for an undergraduate module entitled Childhood and Inclusion: Research Project (77-603593-AF-20178; Convenor: Dr Jen Slater, Department of Education) and the wider course is BA(Hons) Education Studies and BA(Hons) Education with Psychology and Counselling (Sheffield Hallam). The lecture, written from experiences as lead researcher on Living Life to the Fullest, sparked lots of discussion with students and influenced some students to choose disability research for their undergraduate dissertations.
Year(s) Of Engagement Activity 2018
 
Description Runswick-Cole K. (2017) Do we need disabled children's childhood studies? Children and Childhoods Conference, Keynote Speaker, The University of Suffolk, 18th-19th July, 2017. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Children and Childhoods Conference, Keynote Speaker, The University of Suffolk, 18th-19th July, 2017. An audience of more than 50 childhood researchers, practitioners, policy makers and students attended this keynote lecture.
The talk sparked questions about the ways in which we engage with young people in research in relation to sensitive issues, such as end of life.
Year(s) Of Engagement Activity 2017
URL https://www.uos.ac.uk/content/children-and-childhoods-conference-2017-0
 
Description Television appearance and reporting on project: BBC Breakfast (Oct 2017) 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This activity was a 3-4 minute reporting of our research project Living Life to the Fullest, which was televised twice on the national morning TV programme BBC Breakfast on the morning of 27th October 2017 (at 6am and then again at 9.15am). Dr Kirsty Liddiard was interviewed as a researcher on the project, and a number of our young people participants and their parents were interviewed on camera. Young people's art-making and completed art work was also filmed 'on-location'. The report has been viewed online (internationally) over 9000 times; has had 98 Facebook reactions and 38 shares; and on Twitter it had 72 'hearts' [likes] and 37 retweets (from the BBC Breakfast twitter handle alone). Average televised viewing figures of BBC Breakfast are 1.5 million viewers. Comments on Twitter included 'Thanks for sharing, this is a supercool initiative! 'What a brilliant way to enable young people have the safe space to talk, thought this Research might interest you' and 'This is lovely. I have something in both my eyes'. We also had many follow-up emails, from community, artistic and general public communities.
Year(s) Of Engagement Activity 2017
URL http://www.bbc.co.uk/news/av/health-41769478/the-hopes-and-fears-of-young-people-facing-life-limitin...