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).
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.
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.
Organisations
- University of Sheffield (Lead Research Organisation)
- Ryerson University (Collaboration)
- Wellspring Academy Trust (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- Youth Employment UK (Collaboration)
- LEARNING DISABILITY ENGLAND (Collaboration)
- Sunderland People First (Collaboration)
- Scope (Collaboration)
- United Voice (Collaboration)
- University of Guelph (Collaboration)
- IPPR Institute for Public Policy Research (Collaboration)
- Good Things Foundation (Project Partner)
- Purple Patch Arts (Project Partner)
- DMD Pathfinders (Project Partner)
Publications
Daly A
(2019)
Vulnerable subjects and autonomous actors: The right to sexuality education for disabled under-18s
in Global Studies of Childhood
Douglas, P.
(2021)
Mad Mothering Learning From the Intersections of Madness, Mothering, and Disability
in Journal of Literary & Cultural Disability Studies
Garzón Díaz K
(2019)
Teaching disability: strategies for the reconstitution of disability knowledge
in International Journal of Inclusive Education
Goodley D
(2017)
Feeling disability: theories of affect and critical disability studies
in Disability & Society
Goodley D
(2020)
Challenging Transhumanism Clutching at Straws and Assistive Technologies
in Balkan Journal of Philosophy
Goodley D
(2019)
Provocations for Critical Disability Studies
in Disability & Society
Goodley D
(2020)
Rebooting Inclusive Education? New Technologies and Disabled People
in Canadian Journal of Disability Studies
Goodley D
(2019)
Critical disability studies, Brexit and Trump: a time of neoliberal-ableism
in Rethinking History
| Title | Animated Film - The Canine Care Project (2020) |
| Description | This accessible film was produced by and with some of our disabled young co-researchers - it reports the key findings of a small aspect of the research project - young people's experiences with their assistance dogs. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2020 |
| Impact | This film has been used by national charity Canine Partners and is being disseminated widely by the University of Sheffield Public Engagement Team to inform the public and practitioners to the benefits of canine care. |
| URL | https://www.youtube.com/watch?time_continue=162&v=9TEiwqfzPS8&feature=emb_logo |
| Title | Art Installation: Why Can't We Dream? Winter Gardens, Sheffield 21-28th February 2020 |
| Description | In 2020 we commissioned artist Louise Atkinson to produce an installation based on the young people's stories collected within the Living Life to the Fullest project. Why Can't We Dream is a large-scale textile banner created by artist Louise Atkinson, which was exhibited for a week in the Winter Gardens, Sheffield in 2020. The protest banner aesthetic symbolises aspects of visibility, change, activism and celebration and also features motifs from the research. These motifs include elements such as a large central eye, signifying the experience of being observed and pathologised by medical professionals as well as by the general public. In this way, the eye motif returns the gaze back to the viewer, subverting it in the process. |
| Type Of Art | Artwork |
| Year Produced | 2020 |
| Impact | This installation was a key part of exhibiting in a city centre space the stories of the lives of disabled children and young people from the project. It therefore enriched the understanding of the general public audience it was intended to inform. |
| URL | https://livinglifetothefullesttoolkit.com/living-life-to-the-fullest-the-exhibition/ |
| Title | Living Life to the Fullest: The Co-Researcher Collective (2018) (short film) |
| Description | In Living Life to the Fullest: The Co-Researcher Collective (2018) (short film), Living Life to the Fullest co-researchers present and talk about their motivations for and experiences of engaging with research. The film has been screened (thus far) at the Lancaster Disability Studies Conference (Sept 2018) and will be screened as part of our ESRC Festival of Social Sciences event on Tuesday 6th November 2018, 2.00 - 4.00pm, St Mary's Church, Sheffield. It has also been dissemination on Twitter and other social media platforms. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2018 |
| Impact | The film has had a great reception, and multiple educators/lecturers have identified its use for graduate and postgraduate methods courses. The film has been retweeted considerably on Twitter. |
| URL | https://www.youtube.com/watch?v=Ofb4MaLHz8k |
| Title | Rightful Lives Exhibition - Participation |
| Description | The artwork of two young disabled artists who participated in our first Arts Retreat in 2017 - facilitated by our community research partners, Purple Patch Arts - will be having their work included in a new exhibition, Rightful Lives. Rightful Lives begins on Monday 24th September 2018 and will run for a week. |
| Type Of Art | Artwork |
| Year Produced | 2018 |
| Impact | Fraser Carr and Brandon Styles have agreed to be part of Rightful Lives - an online exhibition - to both highlight and educate different professional and civil publics about the lack of access to human rights experienced by many disabled people (particularly those with autism and/or learning disability), as well as the grave violence experienced by many disabled people and their families through the systemic problems and failures in health and social care. For example, see the Mazars Report (2015) and the recent Learning Disabilities Mortality Review (LeDer) (2015-2018). The digital exhibition will be heavily promoted across social media platforms, thus we expect to reach familiar and new audiences. |
| URL | https://markneary1dotcom1.wordpress.com/2018/05/15/rightful-lives/ |
| Description | We have produced a film to introduce the research: Living Life to the Fullest: The Co-Researcher Collective (2018): https://www.youtube.com/watch?v=Ofb4MaLHz8k&feature=youtu.be And we have represented the findings in a number of formats that combine text, images and film: https://livinglifetothefullesttoolkit.com/key-findings/ And in 2022 we will publish a co-authored book - written with some of our co-researchers (disabled young people) https://www.amazon.co.uk/Living-Life-Fullest-Disability-Emerald/dp/1839094451/ref=nodl_?fbclid=IwAR3dsZ51o7eG20qRdsX0M8KBdKdBqRGku3VfZ3eV0ahzwIgSHBgJKLsi8DU The key findings are; 1. Young people routinely carried out multiple forms of work across the many spaces of their lives: (i) relentless management of care/negotiating access in the built environment (care management/bureaucratic responsibility); (ii) emotional work on self and others, particularly parents/family (see family section) - some examples: young people carrying/bearing the emotional trauma/responsibility of impact of disability on family, feeling intense guilt for family breakdown/difficulties/divorces, and even guilt/sorrow for being born at all; (iii) identity work to reclaim a desired self in dis/ableist contexts; (iv) managing disablism, across multiple areas of life (access, exclusion, missing out, media stereotypes); (v) self-advocacy and "fighting" for rights, access and equal treatment: fighting to be heard, seen, fighting to stay alive and thrive; (vi) emotional work of regular losses: of dying friends/peers (this is very common for young people with LL/LTIs), PAs who leave once a friendship/dependence has built up, loss of independence through impairment progression (but no support in emotional working around dealing with loss); (vii) often young people with LL/LTIs were engaged in care work for others as young carers, but this work was never acknowledged. While young people readily listed/articulated multiple forms of work and labour, they didn't always acknowledge it as such, and added to this, such work/labour/expertise was seldom recognised by professionals around the young person, and for many, their parents and families. 2. Illness and/or progression are only conceptualised as threat and jeopardy - living in this holds a number of impacts for disabled young people with LL/LTIs. Critically, illness impacts self, present and future: a precarious time of pain and reflection upon the future as something possibly denied. It often brings a "loss" - of independence, wellness, and stability. Hospitalisation brings difficult experiences, for young people and their families, and can bring about a whole host of changes/conditions for living. Yet illness brings young people an intimate knowledge of the body, but doctors do not appreciate this knowledge, or realise that young people are experts of their own bodies and experiences. Their knowledges are routinely devalued, or actively disagreed with and undermined. 3. Thriving: young people routinely identified as striving and thriving - we need to recognise this as a key part of the project - young people have strong desires to live full lives in the present and the future, regardless of how much time they have to live. Young people we spoke to wanted to live: take risks, make mistakes, experience, learn, love and live fully (but often they did not have the space to). Young people were often creative in their approaches to living and achieving, and were able to articulate their achievements and self-pride in knowing how to live in often difficult circumstances. Our problematic cultural constructions of death, dying and fragility, and our difficult (deeply ableist) social attitudes towards death, left us concluding that society has a lot to learn from young people with LL/LTIs, who value their lives deeply, regardless of the difficulties. 4. Young people could readily talk of sexual ableism and its impacts in their lives, and used the interview space to claim a sexual self and identity: (i) disability and disclosure in online dating; (ii) loneliness and difficulties in socialising and integrating; (iii) difficulties of familial care and PAs in realm of love and sex; (iv) families' low expectations of intimate futures; (v) poor sex education; (vi) the power of others' ableist perceptions in shaping sexual self and sexual access; (vii) validation of sexual self only usually came from others (e.g. partners), not something easily achieved by yourself; and (viii) difficulties in thinking about reproductive future and family-making in the context of LL/LTIs. 5. Young people experienced what we have called the push and pull of care. Good quality care and support are integral to everyday life, and for young people to achieve their ambitions. However, at the same time, care can bring considerable labour for young people, instability, and is often that which needs to be mediated and skilfully managed. For some, it is experienced as a lack of privacy, a feeling of not having control, being dictated to, being manipulated (to use the word of one young person), and can bring a loss of spontaneity, which our young participants said was important as young people. For some, care and being cared for is an emotional experience, which regularly involved building up relationships with PAs, with little support available when PAs had to leave, move on etc. 6. Young people had complicated feelings about future, death, dying and legacy. Young people weren't always explicit when talking about death and dying; talk about death and dying was talked about through talk about illness and future. However, we did question our approach to asking questions about death and dying, that we weren't explicit here, and so did this impact upon young people's stories of death and dying? We found that young people had both pragmatism and a desire to live life to the fullest, despite shortened life expectancies. There was a consciousness to wanting to "cram" life in; to make the most of life. Some told us that they doubted health professionals' perspectives about life expectancy and that "goal posts" about life expectancy were often moved by health professionals as young people aged. For some young people, this meant living in a 'liminal' space where they had little knowledge of how long their lives would be. For some, this eventuality impacted life planning, particularly over their thoughts about having a family. Importantly, legacy - being remembered and leaving something of value to the world - was very important to most of the young people we spoke to. Young people wanted to be remembered by family and friends, and have taken different approaches to what they want to 'leave behind'. |
| Exploitation Route | Our impact and public engagement activities began in earnest December 2018 - some six months earlier than planned. Broadly speaking, the outcomes from our research relate to three broad areas: 1. The development of posthuman understandings of disability 2. The importance of human-non-human animal relationshios 3 The need to engage with the employment aspirations of disabled young people 4. The important of developing new modes of co-production that truly engage disabled young people. We outline how these outcomes have been turned into specific pathways to impact in our Impact Narrative. We have kept an updated website that captures the various ways in which our research might be used by others here: https://livinglifetothefullest.org/welcome/ |
| Sectors | Communities and Social Services/Policy,Creative Economy,Education,Healthcare,Leisure Activities, including Sports, Recreation and Tourism |
| URL | https://livinglifetothefullest.org/ |
| Description | Life, Death, Disability and the Human: Living Life to the Fullest (ES/P001041/1) End of Project Report, January 2021 The Living Life to the Fullest project (April 2017- November 2020) was an ESRC funded transdisciplinary arts-informed research project that forged new understandings of the lives, hopes, desires and contributions of children and young people with 'life-limiting' or 'life-threatening' impairments (hereby LL/LTIs) and their families. What have you discovered or developed through the research funded on this grant? Please explain for a non-specialist audience. We carried out: (i) focus groups with parents of disabled children and young people with LL/LTIs; (ii) online in-depth interviews with disabled young people with LL/LTIs; (iii) collected artistic data via a residential Arts Retreat (Oct 2017) with our Community Research Partner, Purple Patch Arts; and (iv) embarked on a series of in-depth interviews with parents, carers and family members and (v) completed two poetry workshops with disabled young people with LL/LTIs at Rainbows Children's Hospice (Loughborough) and the Attenborough Arts Centre (Leicester). Moreover, we are excelling in our key methodological aims to co-produce knowledge with disabled young people and their families. We have established a vital Co-researcher Collective of dynamic young disabled women who are co-leading the project. Through virtual research environments, the Co-Researcher Collective is actively and meaningfully co-leading inquiry. To be clear, this has thus far involved: (i) supporting research design through discussion (planning both narrative and arts-informed approaches); (ii) co-writing interview schedules for young people and parent participants; (iii) recruiting participants for data collection and carrying out online interviews through email, Facebook Messenger and Skype; (iv) planning the project's impact strategy and building relationships with impact partner organisations; (v) working with our community research partner organisations; (vi) meeting regularly via the Research Management Team to co-manage the research process as a whole; (vii) writing blogs and making films that communicate and document our processes and preliminary findings; (viii) presenting at conferences and research festivals; (ix) undertaking various public engagement and knowledge translation activities (online and offline); and (x) co-authoring articles for publication (Aimes et al., submitted; Goodley et al., 2017). Furthermore, we have presented collaboratively at conferences in the UK and have co-produced and disseminated a short film about the power and meaning of co-production as necessary research politics and practice when working with marginalised young people. We have also won ESRC Festival of Social Sciences funding for 2018 and 2019 and hosted successful events led by the Co-Researcher Collective in Sheffield (including the End of Project conference), and currently we are co-writing a book proposal to be submitted to the publisher Emerald. As our outputs display below, we are committed to co-authoring and dissemination at regular intervals during the project. Have you met your original objectives? Yes. Are there further details of your findings on the web? Our https://livinglifetothefullest.org/welcome/ is co-written by project academics (Goodley, Runswick-Cole and Liddiard) and the Co-researcher Collective. During the project we blogged weekly to promote the project and its work with disabled young people and their families. In what ways might your findings be taken forward or put to use by others? Our work has been adopted in a number of non-academic contexts as we outline in our narrative impact below. We have thus far submitted and published the following peered reviewed articles/chapters in leading academic journals and texts: Books One of our proudest achievements relates to co-authored text we have written with a number of the disabled co-researchers on our project which is due to come out in the Spring of 2021: Liddiard, K. Whitney, S. Watts, L. Evans, K. Vogelman, E. Spurr, R. Runswick-Cole, K and Goodley, D. (forthcoming). Living life to the fullest: Disability, youth and voice. London: Emerald Publishing Limited. The insights from the project have also informed a number of chapters of this text: Goodley, D. (2020). Disability and other human questions. London: Emerald Publishing Limited. And co-researchers on Living life to fullest contributed to an edited international text: Goodley, D. Runswick-Cole, K. and Liddiard, K. (2020). (eds). Interventions in Disabled Childhood Studies. Sheffield: iHuman Publications. Published articles Goodley. D., Cameron, D., Liddiard, K., Parry, B., Runswick-Cole, K., Whitburn, B. and Wong, M.E (2000). Rebooting Inclusive Education? New technologies and disabled people. Canadian Journal of Disability Studies. Goodley, D. and Martin, P. (2020). Challenging transhumanism: Clutching at Straws and Assistive Technologies, Balkan Journal of Philosophy 12 (1), 5-16 Goodley, D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. (2020). The desire for new humanisms. Disability Studies in Education Whitburn, B & Goodley, D. (2019): Storying disability's potential,International Journal of Inclusive Education, DOI: 10.1080/13603116.2019.16684 Del Rocío Garzón Díaz, K. & Goodley, D. (2019): Teaching disability: strategies for the reconstitution of disability knowledge, International Journal of Inclusive Education, DOI: 10.1080/13603116.2019.1640292 Goodley, D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. (2019). Provocations for critical disability studies. Disability & Society. https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1566889 Goodley,D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. (2020). The desire for new humanisms. Disability Studies in Education. Goodley, D. and Lawthom, R. (2019). Critical disability studies, Brexit and Trump: a time of neoliberal-ableism. Rethinking History: The Journal of Theory and Practice. https://doi.org/10.1080/13642529.2019.1607476 Aimes, C., Evans, K., Goodley, D., Liddiard, K., Runswick-Cole, K., Spurr, R., Vogelmann, E., Watts (MBE), L., Whitney, S. (2019) 'Working the edges of Posthuman disability studies: Theorising with young disabled people with life-limiting impairments'. Sociology of Health and Illness Goodley, D., Lawthom, R., Liddiard, K., and Runswick-Cole, K. (2019) Provocations for Critical Disability Studies', Disability and Society. Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (2019) '"I was excited by the idea of a project that focuses on those unasked questions": Co-Producing Disability Research with Disabled Young People', Children and Society. Goodley, D. (2018). The dis/ability complex. DiGeSt, 5, (1), 5-22. Goodley, D., Runswick-Cole, K. and Liddiard, K. (2017) 'Feeling disability: Affect theories and critical disability studies', Disability and Society, DOI: 10.1080/09687599.2017.1402752 (OPEN ACCESS) Books chapters Goodley, D., Lawthom, R. Runswick-Cole, K. (in press). Disability, technology and health. In K. Chamberlain & A. Lyons (Editors). Routledge International Handbook of Critical Issues in Health and Illness. London: Routledge. Runswick-Cole, K., Curran, T. and Liddiard, K. (2017) The everyday worlds of disabled children. In G. Thomas and D. Sakellariou (eds.) Disability, Normalcy and the Everyday. Basingstoke: Palgrave Ltd. Runswick-Cole, K., Curran, T. and Liddiard, K. (eds.) (2018) The Palgrave Handbook of Disabled Children's Childhood Studies.Basingstoke: Palgrave Ltd. Available here. To which sectors do you think your findings might potentially be of interest? We expect the following sectors to be interested in our findings: academics, practitioners in health, education, social work and youth work; palliative care professionals; community and third sector organisations (especially organisations of disabled people); as well as disabled children and young people and their parents, carers and families. Narrative Impact: How have your findings been used? Date first materialised: 2017 What types of impact have arisen from the research? While we are not yet explicitly at the impact stage of the project, we are currently exploring the possibilities for cultural impact (through a national virtual/real life arts exhibition of artistic data); societal impact (through impact projects with a multitude of charity and third sector organisations (MDUK Trailblazers; Canine Partners; Together for Short Lives) and policy & public services through making attempts to engage with policy makers and commissioners through a series of communication and dissemination events in 2019-2020. In which sectors has your research been used? Education, Public Policy debates, Third Sector, Government, Creative Industries. Narrative Impact (from Researchfish, September 2020) Our impact and public engagement activities began in earnest in December 2018 - some six months earlier than planned. Broadly speaking, our impact relates to stimulating policy and practice debates about the lives of disabled children and young people with life-limiting impairments through three specific interventions in community spaces: (1) INFLUENCING UK/INTERNATIONAL PUBLIC POLICY DEBATES Our research identified some of the barriers faced by disabled people trying to access work. To engage policy-makers with our findings, we formed a collaborative partnership with IPPR North, the Institute for Public Policy Research, the leading progressive think tank for the UK and north of England. This research has been used by MPs and journalists: in April 2019 Liberal Democrat MP, Tim Farron, tabled an Early Day Motion citing the report; Andy Burnham, Mayor of Greater Manchester, tweeted the finding to his 46.8k followers; the Guardian, the Yorkshire Post, the Times Educational Supplement, Schools Weekly, Public Finance and the MJ all provided coverage of the report. Following The Guardian article in April 2019, several MPs tweeted about the issues raised including Angela Rayner, shadow education secretary. This media interest led to debates in the House of Commons. In April 2019 Stephen Twigg, (MP Liverpool West Derby), raised the spending statistics in the HoC debate on school funding, and July 2019 Laura Smith (MP Crewe and Nantwich) cited the report during a debate on the Department for Education (DfE) budget. The international impact on policy makers of Living Life to the Fullest can be seen in the issues paper Towards Inclusive Education: A necessary process of transformation written by the Children with Disability Australia (CWDA) in October 2019. This work was produced with the assistance of funding from the Australian Government Department of Education to expand the education policy capacity of CWDA. This document has been cited in numerous submissions evidence to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Education and Learning Issues Paper including Family Advocacy and the Australian Alliance for Inclusive Education. The report was launched at an event in Melbourne chaired by the Disability Discrimination Commissioner in the Australian Human Right Commission. It featured in School Governance, the Australian school sector's leading news and information source on issues related to governance, risk management, compliance and policy management and the Child Development Council newsletter. (2) IMPACT ON CO-PRODUCTION RESEARCH: SCHOOLS, ORGANISATIONS OF DISABLED PEOPLE AND ARTS ORGANISATIONS In the Living Life to the Fullest project we believe that you can't do high quality research about disabled young people's lives without including disabled young people in the process: making decisions, co-leading the project, undertaking fieldwork (collecting data), collaborating in data analysis, and writing, sharing and promoting the research and its findings. We are proud to say that The Co-Researcher Collective, a group of young disabled women, who committed to the project, is radically impacting the way research is typically carried out. The Co-Researcher Collective is a key part of our Research Management Team. It is important to us that our research project is as flexible as possible; participation and leadership can be shaped and adapted to fit around the needs and wants of young people. Every stage of the co-production process of our project has been documented with our co-researchers and presented in our online toolkit: https://whycantwedream.co.uk The toolkit has been adopted by the Wellspring Academy Trust and a number of organisation of disabled people specifically Sunderland People First, Barod, Sheffield Voices, Disability Sheffield, Speakup Self-advocacy Rotherham who have agreed: 1. To draw on the toolkit in their work 2. To add to the toolkit examples of their own co-production e.g. through films, written documents 3. To share the toolkit through their networks, consultancies, contracts and collaborations As part of the work these organisations will commit to the following between March 2020 - December 2021 Regular contact and keeping track - where shared, who they you shared it too, keep a log on how it has been used and shared - and share this with us Way of tracking your thoughts on the toolkit - how it has changed their thinking and the way they do things What has it done for them as an organisation How it has impacted on members of the groups How it will feed into training already planned and/ or education over the next year. Feed into development of The lessons learned about co-production research informed other impact activities detailed below. (2) IMPACT ON EMPLOYMENT: YOUTH EMPLOYMENT PROJECT Drawing on the insights of https://livinglifetothefullest.org/ developed in our Living Life to the Fullest we brought together co-researchers from the project to share their insights with Youth Employment UK on how employers can better support young disabled people. To further increase the reach of the report and engage directly with policy makers in April 2019 IPPR North, the University of Sheffield and Manchester Metropolitan University jointly hosted a public policy roundtable to discuss the findings. This event led to a collaboration with the APPG Secretariat, Youth Employment UK (YEUK), a leading organisation working to change the youth employment landscape for young people aged 16-24 years. Following the roundtable YEUK recognised the need to revise their resources for young people and employers to be more inclusive of disabled young people. Working with YEUK we developed a webinar for employers which will be shared with the 700 organisations engaging with their content every month, of which 100 are members. We are working with their Director of Communications and Operations to evaluate their resources and ensure young people with disabilities are included in their messaging. This led to the production of the a webinar: https://www.youthemployment.org.uk/employment-and-disabled-people-what-employers-need-to-know/ A recording of the webinar is available here: https://www.youtube.com/watch?v=IjMjNINeYCw&feature=emb_logo And we produced written guidance for employers: https://livinglifetothefullesttoolkitcom.files.wordpress.com/2020/02/ria2219_research-impact-associate-handout-for-yeuk_v4-12.00.24.pdf Related to this, Runswick-Cole and Goodley's were invited to contribute to the DWP evidence gathering around children with SEN/D and transition to employment in March, 2019. This evidence is now being considered internally by the DWP and will inform policy design. Runswick-Cole was also invited to submit evidence in September 2019 to the DWP consultation Health in Everyone's Business and Runswick-Cole and Goodley contributed evidence to cross departmental Youth Charter, resulting in a contribution to the DfE's SEN/D Review. (3) IMPACT ON EDUCATIONAL PRACTICE: CO-PRODUCED RESEARCH IN SCHOOLS Despite a growing recognition that those affected by research are best placed to design and deliver it there is a lack of guidance about co-producing research with disabled young people, resulting in further exclusion and marginalisation. These findings were shared at a public engagement event in 2018, the Festival of Social Sciences. Subsequently, the Wellspring Academy Trust (which manages 23 schools in the north of England) approached Liddiard to do a collaborative project with students, starting with a pilot in a special needs school in Barnsley. Liddiard, in collaboration with staff and students, we developed a bespoke and response co-production approach to working with young disabled people and schools; https://whycantwedream.co.uk/working-with/working-with-schools-communities This project has had a significant impact on students who have developed expertise in co-produced research, and they have shared this with policy makers in the local authority at the Young Person Disability subgroup (November 2019). When the young people presented at the 2019 ESRC Festival of Social Sciences their teacher reported he had not expected them to participate in the event in the way they did and was amazed by their willingness to speak publically. Impact has also been demonstrated in their assessment data: The children involved in this project made more progress in emotional wellbeing than any others in the school (SEND teacher, Greenacre School). The Toolkit has impacted practice and had positive benefits: teachers involved are embedding co-producing research in the classroom. In SEN/D schools teachers need to collect extensive assessment data for young people, using different criteria from mainstream schools. Using the Toolkit and co-productive methods improved the capacity of teaching staff to access and assess and report the young peoples' outcomes, including in numeracy, literacy and emotional wellbeing. This is a tool that can reduce workload and produce high-quality and effective assessment data (SEND teacher, Greenacre School). The toolkit is now being implemented across the academy trust across six INSET days (2020/2021) and teachers have reported it as a key benefit to their pedagogical practice. We continue to work the Academy Trust and document our engagement with schools. (5) IMPACT ON ARTS PRACTICE As a result of an arts-informed methodology, the Serpentine approached Professor Runswick-Cole to work collaboratively on a book and present at a follow-up event attended by 85 people representing parents, educators, art and culture organisations and artists, including Tate Modern, V&A and Science Museum. The book and the event focused on inclusion in education and how artists and arts organisations can support this. The Serpentine continues to draw on Runswick-Cole's work when planning exhibitions, events, collaborations and campaigns. Professor Runswick-Cole continues to have an influence on the work we do as we consider our role in creating and opening space for debate and change (Education Curator, Serpentine Gallery). We continue to document our work with the arts here: https://whycantwedream.co.uk/working-with/working-with-the-arts (6) IMPACT ON PERSONAL ASSISTANCE: THE CANINE CARE PROJECT The Canine Care Project was a small research project that explored the experiences of disabled young people who have assistance dogs. https://whycantwedream.co.uk/about-us/making-change We partnered with Canine Partners, a registered charity that transforms the lives of disabled people through partnering them with assistance dogs. Through a small collective Research Team of academic researchers, Canine Partners collaborators, and Sally Whitney, a disabled young co-researcher who has a Canine Partner, we wanted to further explore related early findings emerging from our larger umbrella project, Living Life to the Fullest. Early findings from Living Life to the Fullest showed that assistance dogs can play a significant part in the lives of disabled young people and can transform their experiences of living with disability. For example, young people told us that an assistance dog did far more for them than practical tasks (although these are very important), but actually made them feel happier, safer and more at ease in social situations. As such, we wanted to further this inquiry, making impact through a 'Crook Fellowship' model to deliver a small project in partnership with Canine Partners. Crook Public Service Fellows work closely with academics in a partnership that offers mutual learning and encourages original thinking, combining the latest academic research with practical experience, in order to influence their sector and potentially the wider society. Led by Sally Whitney, The Canine Care Project administered an online questionnaire to young people (aged 18-35) partnered with a Canine Partner. The aim of this work was to quantify the impacts of assistance dogs upon disabled young people; to affirm our early qualitative data in the form of young people's stories; and to provide a quantitative analysis that we aimed would shape the work of policy makers, commissioners, local authorities and health, education and social care professionals with regards to the care and support of disabled young people. Key Recommendations: Enable every disabled young person with physical impairments to be aware of the possibilities and benefits of canine care. This small-scale project has opened up more questions about the impact of canine care that need to be explored more fully. So, we recommend: Developing research that engages with the views of all people who are supported by Canine Partners across the life course, paying attention to the intersections of disability, class, race, ethnicity, gender, age, poverty and sexuality. There should be more research about, and awareness of, the ways in which inter-species relationships are a fundamental element of rethinking future human relationships - especially for those who are marginalised and displaced. For future discussions see http://ihuman.group.shef.ac.uk/humanity-under-duress/ Specifically, our quantitative evidence made the case that alternative forms of care and support are available for young disabled people; that access to support via an assistance dog can improve a disabled young person's sense of belonging, access to the social world and access to key opportunities and inclusion within education, training and employment. We did this through: Producing and disseminating the Canine Care Project Report to disabled young people, families and parents, education, health and social care practitioners and policy makers. You can download a copy of the report below. Co-producing a short accessible film that we have used across a variety of spaces. You can access the film below. Holding a virtual round table via webinar, inviting policy makers, commissioners, local authorities and health, education and social care professionals to come together online to explore the key findings of the Canine Care Project Report. We have produced a report; https://whycantwedream.co.uk/uploads/images/canine-care-project-final-compressed.pdf We also commissioned a Film Animator to capture the key elements of the project; https://www.youtube.com/watch?v=9TEiwqfzPS8&t=162s (7) IMPACT ON THE SELF-ADVOCACY OF PEOPLE WITH LEARNING DISABILITIES IN THE UK AND MALAYSIA Co-production resources and good practice guidelines developed by the project (https://whycantwedream.co.uk/about-us/making-change) were drawn upon in order to work with two self-advocacy groups: Sunderland People First, UK and United Voice, Kuala Lumpur, Malaysia. For the UK strand of this work Goodley and Runswick-Cole secured internal funding to convene the 2018-2019 Crook Fellows DIsability and Disadvantage https://www.sheffield.ac.uk/social-sciences/news/new-crook-fellows-explore-disability-and-disadvantage As part of this work we worked in co-production with Sunderland People First to identify a priority in the lives of people with learning disabilities. The priority identified was an urgent need to collate and map self-advocacy groups in the UK, to ensure that people with learning disabilities could access this support. A report on this work is provided here: https://whycantwedream.co.uk/uploads/images/inc_100108_self-advocacy-a4-4pp_v2.pdf Goodley and Runswick-Cole extended this work with United Voice in Kuala Lumpur who also identified the need to identify and share self-advocacy groups in Malaysia. As consequence of these two projects was the launch of two crowd-sourced interactive websites launched, respectively, in December 2020 and February 2021: https://selfadvocacygroups.co.uk - UK http://www.selfadvocacygroups.com - Malaysia We will continue to support our research partners in populating the websites and raising the profile of self-advocacy across both countries. (8) IMPACT ON PRACTITIONERS WORKING WITH YOUNG PEOPLE WITH LL/LTIs In 2020 we have started to develop a further impact strand of our work. We been invited to present our key findings at two practitioner events: Achieving Multi-Agency Approach to Complex Needs Pathways Online Forum, Tuesday 19th January 2021. Including service providers and practitioners across NHS and voluntary sector. Transition Coordinators meeting on Thursday 28th January, from 10am. Members are both hospice and non-hospice sector staff, all of whom work with young people (complex and life limiting) and their families during transition. Our plans from February 2021 are to work more closely with key practitioners to share findings of the research and lessons of co-production. (9) MAKING CONNECTIONS IN THE LIVES OF DISABLED YOUNG PEOPLE Between 2019 and 2021 we were invited by Scope to tender for some research (funded by them) to explore mapping the key connections and capital in the lives of disabled young people. Adopting our co-production methodology developed in the Living Life to the Fullest project we brought together disabled young people as co-researchers and research participants - supported by Scope colleagues - to identify the key connections via online methods. Our findings and recommendations were reported in a number of outputs including: Key findings / easy read report on the Scope website: https://www.scope.org.uk/campaigns/research-policy/making-connections-disabled-young-people/ Goodley et al (fc). Posthumanist disability studies. In S. Herbrechter, I. Callus, M. Rossini, M. Grech, M. de Bruin-Molé and C. John Müller. Palgrave Handbook to Critical Posthumanism. London: Palgrave. (10) STIMULATING PUBLIC DEBATES BBC Breakfast https://www.youtube.com/watch?v=SSz7j1EU0Rg BBC Radio Sheffield (2020): https://www.bbc.co.uk/programmes/p080vlgm BBC Radio Sheffield (2018): https://www.youtube.com/watch?v=LGpRqz1ze-I BBC Radio Sheffield (2020): Disability History Month |
| First Year Of Impact | 2017 |
| Sector | Communities and Social Services/Policy,Creative Economy,Education,Healthcare |
| Impact Types | Cultural,Societal |
| Description | A workshop and dialogue event held at Enabling Village Singapore (the newest and most disability inclusive space in the nation state) that brought together practitioners, professionals, government funded organisations and disabled people to explore the promotion of community participation, self-advocacy and supportive employment for people with intellectual disabilities. This invited session permitted Goodley to share key research funding to key people. |
| Geographic Reach | Asia |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | Advisory Board: Sheffield's Sexual Health Network Sex and relationships education (SRE) Task Group |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Dr Liddiard (Living Life to the Fullest Co-Investigator) has taken up a related role as an advisory board member advocating the education and sexual health needs of disabled young people on the Sheffield's Sexual Health Network newly-formed Sex and relationships education (SRE) Task Group. This will include offering expert knowledge, evidence from research and critically reviewing sexual health materials for use across the city of Sheffield as part of its regional revisions to Sex and relationships education (SRE) curricular. This will make significant impact to the sexual health and safety of disabled young people, who remain excluded from and under-rreoresented in Sex and relationships education (SRE) nationally. |
| Description | Educating fellow academics and researchers about the use of online and social technologies in social research methodologies with disabled young people, workshop, University of Liverpool. |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Dr Liddiard (Co-Investigator, Living Life to the Fullest) has been invited to educate, train and inform fellow academics and researchers at the School of Law, University of Liverpool, leading a workshop on online and social technologies in social research methodologies with disabled young people (methods employed within Living Life to the Fullest). |
| Description | Influencing future Occupational Therapists |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Informing future Occupational Therapists on researching with marginalised groups; how to engage with disability politics and disabled young people; and embedding an ethic of care promoted in our project we suggest has a positive effect on the learning of OT students, and opportunities to influence their practice in the future. |
| 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 | Developing a capital model of the lives of disabled young people |
| Amount | £25,000 (GBP) |
| Organisation | Scope |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2020 |
| End | 06/2021 |
| Description | Disability Matters |
| Amount | £2,977,154 (GBP) |
| Funding ID | 226705/z/22/z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 08/2029 |
| Description | Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism |
| Amount | £731,114 (GBP) |
| Funding ID | ES/W003406/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 08/2025 |
| Description | Knowledge Exchange (KE) Support Fund - University of Sheffield Rethinking Care: Human-animal relations and the social and emotional wellbeing of disabled young people (Canine Care Project) |
| Amount | £7,800 (GBP) |
| Funding ID | X/161847 |
| Organisation | University of Sheffield |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2019 |
| End | 03/2020 |
| Description | Greenacre School and the Wellspring Academy Trust |
| Organisation | Wellspring Academy Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have partnered with Greenacre School and the Wellspring Academy Trust to further develop and disseminate our Living Life to the Fullest Co-Production Toolkit to teachers, school leaders and associated educational professionals. |
| Collaborator Contribution | Our partners, Greenacre School and the Wellspring Academy Trust, have given time, space and resource towards the above. They have made space for us to present the Toolkit across the Trust (Midlands and North of England). |
| Impact | Living Life to the Fullest Co-Production Toolkit - https://livinglifetothefullesttoolkit.com/working-with-schools/ |
| Start Year | 2019 |
| Description | Improving pathways to employment for disabled young people |
| Organisation | IPPR Institute for Public Policy Research |
| Department | IPPR North |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We collaborated on with IPPR North on a report "Plans that work: improving pathways to employment for young disabled people" |
| Collaborator Contribution | They authored the report in collaboration with the research team for Living Life to the Fullest and Big Society They also collaborated on a co-authored journal article with the research team for the British Journal of Special Education |
| Impact | Plans that work - IPPR report https://www.ippr.org/research/publications/plans-that-work Plans that work - journal article https://onlinelibrary.wiley.com/doi/abs/10.1111/1467-8578.12298 |
| Start Year | 2018 |
| Description | International Advisory Board Member |
| Organisation | Ryerson University |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | Katherine Runswick-Cole is a member of the Inclusive Early Childhood Service System project international advisory board http://inclusiveearlychildhood.ca |
| Collaborator Contribution | Katherine is an advisor to the project and has presented at conferences and co-authored with colleagues a journal article which is under review |
| Impact | Journal article is in press |
| Start Year | 2018 |
| Description | Learning Disability England hosting map |
| Organisation | Learning Disability England |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Learning Disability England have agreed to host and maintain the self-advocacy map produced with Sunderland People First |
| Collaborator Contribution | LDE is committed to hosting the map on its website and to updating it with details of new groups |
| Impact | Online interactive map |
| Start Year | 2019 |
| Description | Making connections to support disabled young people to live their lives |
| Organisation | Scope |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Scope approached the Living life to the Fullest research team to implement a research project that mapped the key connections in the lives of disabled young people. We brought in co-researchers from the project to work with Scope and the University on a qualitative online study that accessed and mapped the connections in the lives of disabled young people. |
| Collaborator Contribution | Scope funded the project and also worked with us as collaborators and team members to design the research and outcomes: the latter being focused around identify key connections in the lives of disabled young people that promoted their community participation and inclusion. |
| Impact | Key findings / easy read report on the Scope website: https://www.scope.org.uk/campaigns/research-policy/making-connections-disabled-young-people/ Goodley et al (fc). Posthumanist disability studies. In S. Herbrechter, I. Callus, M. Rossini, M. Grech, M. de Bruin-Molé and C. John Müller. Palgrave Handbook to Critical Posthumanism. London: Palgrave. |
| Start Year | 2019 |
| Description | Poetry workshops and exhibition with Attenborough Arts Centre (AAC), Leicester |
| Organisation | University of Leicester |
| Department | Attenborough Arts Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Living Life to the Fullest is partnering with the Attenborough Arts Centre, Leicester, to host two poetry workshops for children and young people with life limiting and life threatening impairments. These take place in February 2019. |
| Collaborator Contribution | Attenborough Arts Centre have contributed a key liaison staff member to work with Dr Kirsty Liddiard (Co-Investigator and Lead Researcher); is providing a venue for the workshops at no charge, and facilitating an arts exhibition (including space and technical expertise). |
| Impact | Two poetry workshops (Feb 2019) Living Life to the Fullest Arts Exhibition 2019 |
| Start Year | 2018 |
| Description | Re*Storying Autism |
| Organisation | University of Guelph |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | Professor Katherine Runswick-Cole is a collaborator a Social Sciences and Humanities Research Council funded project led by Dr Patty Douglas (Brandon University) Re-Storying Autism. She has travelled to Toronto to take part in a digital story telling workshop. The result of this collaboration is three internationally co-authored journal articles in preparation. |
| Collaborator Contribution | The partners hosted a three day digital story telling workshop facilitated by artists and film makers, they are promoting the films via their social media platforms. |
| Impact | Three journal articles are in press One digital story was made |
| Start Year | 2017 |
| Description | Sunderland People First - self advocacy map |
| Organisation | Sunderland People First |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Working as part of the Crook Public Service Fellowship Scheme, and allied to Living Life to the Fullest and Big Society? Disabled people with learning disabilities and civil society, we worked with Sunderland People First to co-produce an on-line map of self-advocacy groups in England. For the first time, disabled people will be able to have access to a resource that will allow them so search for their nearest advocacy group and to find out about the work it does. |
| Collaborator Contribution | The partner organisation were involved in the inception of the piece of work, they carried out data collection for the map, worked with the web developer to produce an accessible online resource and are promoting the resource through their networks. |
| Impact | The output is an online searchable map of self advocacy groups - we will be able to track engagement with the site and the reach of the project |
| Start Year | 2018 |
| Description | United Voice - Self Advocacy Map |
| Organisation | United Voice |
| Country | Malaysia |
| Sector | Charity/Non Profit |
| PI Contribution | United Voice have worked with us to develop an online interactive map of self advocacy groups in Malaysia. They will host the map on their website and will continue to update it when new groups open and when groups close |
| Collaborator Contribution | UV have been involved in the design of the map working alongside us to ensure that the map is culturally relevant, they have collected information about the groups to upload on the map. They will continue to host the map and update it. |
| Impact | Online interactive map of self advocacy groups in Malaysia |
| Start Year | 2018 |
| Description | Youth Employment UK |
| Organisation | Youth Employment UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | As a result of the work by the team of co-researchers on living life to the fullest and on employment, we were invited to collaborate with Youth Employment UK on revising their materials for young people and employers to enhance accessibility and improve information. We also co-produced a podcast with them and with Sunderland People First and My Life My Choice, Self-Advocacy groups, which focused on advice to employers. |
| Collaborator Contribution | By hosting the podcast and disseminating materials linked to the project, the partners have contributed their networks to the project. |
| Impact | Materials for employers Podcast |
| Start Year | 2019 |
| Description | A RIGHT TO EDUCATION FOR ALL: #SENDNATIONALCRISIS |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Professor Katherine Runswick-Cole spoke at one of 28 marches across the country organised by parents campaigning for better support for children with "SEND" in schools. |
| Year(s) Of Engagement Activity | 2019 |
| Description | A talk- Working the Edges of Posthuman Disability Studies in Toronto |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Drawing on work with colleagues Dan Goodley and Kirsty Liddiard and the Co-Researcher Collective made up of Sally Whitney, Lucy Watts, Ruth Spurr, Carrie Aimes, Emma Vogelmann and Katy Evans, Katherine spoke about the project, Living Life to the Fullest: life, death, disability and the human. Katherine outlined the ways in which the project has used the principles of coproduction from research design to dissemination of findings and the impact that this has had on the research project. An audience of up to 30 faculty and students from across the universities in Toronto attended the event which sparked discussion about how research can be coproduced with disabled young people. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Co-production toolkit launch in Melbourne, Australia |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dan Goodley launched the Living Life to the Fullest toolkit here in Melbourne Australia today (https://livinglifetothefullesttoolkit.com/). This followed on from the launch last week in Singapore. In a seminar hosted by REDI at Deakin University Dan spoke about the processes involved in the writing of this toolkit - led by Kirsty Liddiard and a team of co-researchers - and supported by Dan and Katherine Runswick-Cole. Eve Mayes from Deakin University gave a critical response to Dan's paper and linked a discussion of co-production with her own work and research. Dan has also spent time this week working up a follow-on funding application with colleagues in Deakin focused on promoting digital inclusion. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://ihuman.group.shef.ac.uk/australia-launch-of-co-production-toolkit/ |
| Description | DWP consultation event |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | On 8th March, 2019, Katherine was invited to take part in a workshop run by the DWP to look at improving transitions for young people with SEND. This informed the development of an evidence review paper: Young people with SEND, improving transitions to employment. |
| Year(s) Of Engagement Activity | 2019 |
| 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 | Disability and Childhood Symposium |
| 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 | This two day symposium brought together researcher, activists and practitioners to consider the interconnections between disability and childhood studies. All papers were short an accessible (1000 words) and written with reach in mind |
| Year(s) Of Engagement Activity | 2020 |
| Description | Dr Liddiard interviewed on BBC Radio Sheffield about the project - 10/2/2020 |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Dr Liddiard was interviewed on BBC Radio Sheffield in the popular morning slot. She was on air for over 10 minutes discussing project outcomes. She was also invited on in the near future to talk about the project's impact on disabled young people. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.bbc.co.uk/programmes/p080vlgm |
| Description | Dr Liddiard participated in an online webinar on online research methods to entire PGR community at University of Sheffield - 2/4/2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Via invitation, Dr Liddiard participated in an online webinar on online research methods to entire PGR community (400 +) at University of Sheffield. The recorded talk is also being shared across multiple teaching modules as a good example of virtual research methodology and co-production. As a result, many students were supported to change their research methods to online methods due to the impacts of COVID-19. |
| Year(s) Of Engagement Activity | 2020 |
| Description | ESRC Festival of Social Sciences event. Creativity and Co-Production: Possibilities for Research - Tuesday 5th November 2019 from 2.00pm - 4.00pm at The Circle, Sheffield. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Over 50 attendees came along to the event - a mix of students, researchers, academics, teachers, and professionals enabling broad knowledge exchange. This work was key to developing our relationship with our community partner Greenacre School and furthering our Living Life to the Fullest Co-Production Toolkit. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://livinglifetothefullest.org/2019/10/01/esrc-festival-of-social-sciences-2019/ |
| Description | Education is not a chocolate biscuit - again! |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Katherine Runswick-Cole, Professor of Education, The School of Education and iHuman at the University of Sheffield, was invited to present a version of her inaugural lecture at the Department of Education at the University of Malaya on 4th April, 2019. Katherine's talk focused needs, rights and humanity in the education system in the UK. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Ethics in childhood Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Katherine Runswick-Cole attended a workshop at the University of Linkoping, Sweden where she spoke about ethics in childhood research. This talk was to <50 academic and professional/practitioners attendees and sparked discussion about the role of developing ethical considerations when involving disabled children and young people in co-production research. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Exploring Multiple Childhoods |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Tema Barn (Childhood Studies) at the University of Linkoping, Sweden. is an interdisciplinary research centre focused on children and childhoods that focuses on children's perspectives and on child-orientated research methods. Professor Anna Sparrman and her team convened a multidisciplinary workshop to bring together an group of international academics to explore the multiplicities of children's childhoods. Professor Katherine Runswick-Cole (The School of Education and iHuman at The University of Sheffield) was invited to talk about "Ethic as Method". Drawing on her work with colleagues Dr Kirsty Liddiard and Professor Dan Goodley and the Co-Researcher Collective, Katherine spoke about participatory research with children and young people as a form of relational ethics. She described the ways in which disabled children and young people have been excluded from research in the past. She talked about how the research team were learning together to understand the lives of children and young people with life limiting and life threatening impairments as part of an ongoing research project "Living Life to the Fullest: Life, Death, Disability and the Human" (funded by the Economic and Social Research Council. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Influenced training of practitioners or researchers |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | In September (11th - 13th, 2018) Living Life to the Fullest held a panel at the 9th Biennial Lancaster Disability Studies conference in the north of England, UK. The conference welcomes disability researchers, academics and activists from around the world, and we shared the process of our project so far in our panel entitled, Living Life to the Fullest: Arts, Activism and Youth. Abstract: Living Life to the Fullest: Arts, Activism and Youth In this panel we share our methodological and theoretical journey so far in our narrative and arts-informed ESRC-funded research project, Life, Death, Disability and the Human: Living Life to the Fullest. Our research seeks to forge new understandings of the lives, hopes, desires and contributions of disabled young people with what are classified as having, according to medical language, 'life-limiting and life-threatening impairments' (hereby LL/LTIs). We can gauge the values of any society by considering how it treats those people who are the most marginalised and too often disabled young people find themselves on the outskirts of society. This is especially the case for young people with LL/LTIs. And, while we know much about the deaths of young people with LL/LTI, we know relatively little about their everyday lives, ambitions and desires. This invisibility is detrimental to their social and emotional wellbeing, and that of their families, carers and allies. Working alongside our Research Management Team of community research partners, disabled people, parents of disabled children living with LL/LTI, academics, researchers, activists and other supporters, and the Co-Researcher Collective, a core group of young co-researchers living with LL/LTI, we are in the process of co-producing knowledge that seeks to value short(er) lives and respect death as part of the human condition. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://livinglifetothefullest.org/2018/05/21/living-life-to-the-fullest-arts-activism-and-youth/ |
| Description | Interview and engagement on co-production with disabled young people: Invited by Dr Stuart Read, Institute for Education Bath Spa University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Kirsty Liddiard was invited by Dr Stuart Read, Institute for Education Bath Spa University to speak about co-production methods with disabled young people and to contribute expert knowledges to shaping of a future bid for funding. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Interview and engagement with Dr Elizabeth Taylor Buck, Research Fellow School of Health & Related Research University of Sheffield |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Kirsty Liddiard met with and spoke to Dr Elizabeth Taylor Buck from the University of Sheffield, who requested to know more about the art-making and narrative approaches used in Living Life to the Fullest. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Interview and engagement with Harry Gordon, Greenacre School, Sheffield |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | Dr Kirsty Liddiard was invited by Harry Gordon, Greenacre School, Sheffield to speak about the production of research tools for meaningful co-production research with disabled pupils at Greenacre School. |
| Year(s) Of Engagement Activity | 2019 |
| 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 COMMUNITY SERVICES ALUMNI ABOUT AHS Eyebrow menu Inside AHS AHS Directory Give to AHS UIC menu UIC.edu Campus Map Search the site Search... Submit Breadcrumbs Home AHS Alumni Calendar 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 R.S.V.P. AHS ALUMNI Give to AHS AHS Alumni Awards Meet Our Alumni Calendar Contact |
| 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 | Invited talk to Singaporean school teachers engaged with PGT course at National Institute of Education Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Schools |
| Results and Impact | Invited talk exploring disability research and applications in special education and mainstream education contexts. |
| Year(s) Of Engagement Activity | 2014,2016,2018 |
| 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 | Keynote and disability expert panel on disability advocacy and inclusion in Singapore hosted by Disabled People's Association of Singapore |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | Goodley presented a keynote exploring key policy and advocacy issues relating to disabled people which was followed by his contribution to an expert panel of disability advocates and disabled people from Singapore. This included representation from Deaf, blind and autistic communities. Question and answer sessions invited an expiration of good practice in relation to inclusion, raising public awareness of disability issues and pragmatic responses to new government masterplan on disability and access in Singapore. |
| Year(s) Of Engagement Activity | 2019 |
| Description | LIVING FULL LIVES 2020! An end of project event: 21ST FEBRUARY 2020 FROM 10.00-4.00PM AT THE MILLENNIUM GALLERY, SHEFFIELD |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 70+ professionals, academics, charity partners, parents and disabled children and young people attended Living Full Lives 2020, our end of project event, in Sheffield. We showcased our project and associated impact projects alongside our disabled young co-researchers. This encouraged the exchange of knowledges between practitioners, parents and academics in the room. It also built future relationships for impact collaborations. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://livinglifetothefullest.org/2020/01/06/living-full-lives-2020-an-invite/ |
| Description | Launch of Co-Production Toolkit in Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Launching the Living life to the fullest co-production toolkit in South East AsiaDan Goodley hosted a lecture and workshop on the Co-production Toolkit; a key impact output of ESRC living life to the fullest research project. This workshop took place at the National Institute of Education and builds on some established and emerging collaborations between NIE and iHuman. This also begins a series of activities that launch the toolkit in South East Asia .https://livinglifetothefullesttoolkit.com/ |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://ihuman.group.shef.ac.uk/category/news/ |
| Description | Launch of co-production toolkit in Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dan Goodley hosted a lecture and workshop on the Co-production Toolkit; a key impact output of ESRC living life to the fullest research project.This workshop took place at the National Institute of Education and builds on some established and emerging collaborations between NIE and iHuman.This also begins a series of activities that launch the toolkit in South East Asia. (https://livinglifetothefullesttoolkit.com/). More info: http://ihuman.group.shef.ac.uk/launching-the-living-life-to-the-fullest-co-production-toolkit-in-south-east-asia-singapore/ |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://ihuman.group.shef.ac.uk/launching-the-living-life-to-the-fullest-co-production-toolkit-in-sou... |
| Description | Liddiard, K. (2019, May) The Living life to the Fullest Project. Keynote speech at Researching with Disabled Children, White Rose, University of Leeds, 31st May 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | This event provided an opportunity for PGRs and researchers across all White Rose DTP HEIs to build inclusive approaches to researching with disabled children. As keynote speaker, I was invited to inform and inspire PGRs as to best practice in methodological engagement when researching the lives of disabled children and young people. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Living Life to the Fullest Co-Production Toolkit workshop - Wellspring Academy Trust, 7th February 2020 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | On Friday 7th February 2020, Dr Kirsty Liddiard, of iHuman and the School Education, went to Greenacre School, Barnsley, to co-run a workshop for teachers and school leaders from the Wellspring Academy Trust on the benefits of research as pedagogy for disabled children and young people in SEN/D schools. Working closely with Harry Gordon, SEN/D teacher at Greenacre School, the Research Team are furthering tailoring the Living Life to the Fullest Co-Production Toolkit to the needs of teachers and schools. The team began working with Greenacre School in order to diversify their methods of co-production, extending the work to children and young people with the labels of learning disability and/or autism. Greenacre is a school educating children and young people aged 3 - 19 labelled with severe and complex needs. Friday's Research in the Classroom workshop is the first step in sharing the Toolkit inter/nationally. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://ihuman.group.shef.ac.uk/research-in-the-classroom/ |
| Description | Living Life to the Fullest: Co-Production, Disability and Youth. Keynote speech given at Collaboration, Creativity & Complexities Conference, Manchester Metropolitan, 26th & 27th June 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Over 300+ delegates attended Dr Liddiard's keynote at a national conference on co-production methods; this led to traffic to the website and future invites to speak about the project in other contexts. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www2.mmu.ac.uk/media/mmuacuk/content/documents/mcys/Collaboration,-creativity-and-complexity... |
| Description | Op Ed. for the Yorkshire Post newspaper |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Following an invitation to speak at the SEND crisis rally in Leeds, I was invited to write an Op. Ed for the Yorkshire post |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.yorkshirepost.co.uk/news/opinion/columnists/how-special-needs-families-are-finding-their... |
| Description | Participation for all |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Professor Katherine Runswick-Cole presented at the European Academy of Childhood Disability: Innovation for participation Conference 23rd - 25th May, 2019 in Paris. Katherine was invited to present as part of an international panel including: Dr Tillie Curran, Dr Marisol Moreno Angarita and Emeritus Professor Don Wertlieb, who are all members of the international research management group for The Inclusive Early Childhood Service System Project based at Ryerson University, Canada. Dr Kathryn Underwood leads the project; she also spoke on the panel. Their presentation, A Theoretical and Methodological Basis for Early Childhood Intervention, focused on the importance of centring the concerns of children and families in research about their lives. The presentation sparked lively debate about understandings of childhood, youth and disability and the nature of participation in research and in decisions about health and social care. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Presentation at Sexual Politics in Diverse Communities, SCHOOL OF SOCIOLOGY AND SOCIAL POLICY EVENT WEDNESDAY 3 APRIL 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dr Kirsty Liddiard gave a talk entitled Unpacking intimate citizenship: what can we learn from disabled people? which featured artistic data from Living Life to the Fullest; 50 people were in attendance and the talk sparked discussion and raised debate about forms of sexual support available to disabled young people with life limiting and life threatening impairments. |
| Year(s) Of Engagement Activity | 2019 |
| 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 | Public Policy Roundtable - Manchester |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | On 15th April, we hosted a public policy round table with IPPR North to discuss improving pathways to employment for disabled young people. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Public Policy Roundtable - Sheffield |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | On 16th April, 2019, we co-hosted a public policy round table with IPPR North to discuss improving pathways to employment for disabled young people. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Public lecture National Institute of Education Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A public lecture exploring key lessons for critical disability research and links to practice, policy-making and engagement with NGOs. Brought in findings from three ESRC funded projects |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://www.nie.edu.sg/event-detail/what-is-critical-disability-studies-and-why-do-we-need-it-in-sin... |
| Description | Rights to |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Katherine Runswick-Cole was invited to talk at an event organised by the Serpentine Gallery on at Hoxton Hall on 26th November, 2019. She spoke about the need to uphold disabled children's rights and humanity |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.serpentinegalleries.org/learn/changing-play/rights |
| 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... |
| Description | The Co-Researcher Collective: What does it mean to live life to the fullest? #LiveFull2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Living Life to the Fullest has been successful in a small funding award to participate in the Economic and Social Science Research Council's (ESRC) Festival of Social Sciences 2018! The event, entitled The Co-Researcher Collective: What does it mean to live life to the fullest? #LiveFull2018, showcased the work of the The Co-Researcher Collective - a group of vibrant young disabled people co-leading Living Life to the Fullest. The event made space to inform and engage with audiences about co-production - working together in partnership to meet the aims of the project. Living Life to the Fullest co-researchers presented, talking about their motivations for and experiences of engaging with research, as well as screened their film Living Life to the Fullest: The Co-Researcher Collective (2018). Discussion and a Q&A followed. In addition, we displayed some of our project data so far - young people's artwork - for audiences to view. Most importantly, the event provided a space to discuss and learn about co-production research with and from co-researchers themselves, as well as contemplated Living Life to the Fullest's core themes of youth and future, disability and access, and arts and activism - pertinent social and cultural debates of our current times. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://livinglifetothefullest.org/2018/06/20/esrc-festival-of-social-sciences-2018-livefull2018/ |
| Description | Workshop for Wellspring Academy Trust on how to coproduce research with disabled young people |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | Profs Goodley and Runswick-Cole co-led a workshop with Harry Gordon, Greenacre School. The team presented the work they have done with children with special educational needs and/or disability to support them to set their own research questions and to carry out research. Harry explained how this work can be used to assess students' learning. |
| Year(s) Of Engagement Activity | 2021 |