Life, Death, Disability and the Human: Living Life to the Fullest (ESRC) (2017-2020): Living Life to the Fullest is a partnership research project of the University of Sheffield and Manchester Metropolitan University, and funded by the ESRC (ES/P001041/1). Working in partnership with children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs) and their allies, the research aims to explore the lives, hopes, desires and contributions of disabled children and young people. Below are some aims of the research, as we currently envisage them:
- To work in partnership with disabled children and young people with LL/LTIs.
- To make visible the lives, desires, hopes and contributions of disabled children and young people with LL/LTIs, and those of their parents/carers and families, to wider society; disability communities; dis/ability studies; wider family; the professionals who support them; and to the health and social and palliative care policy that governs their lives.
- To explore disablism and ableism in disability life.
- To ask disabled children and young people with LL/LTIs (what could be considered) radical questions: What are your ambitions? What would you like to do with your life? What contributions do you make? How are these contributions shaped?
- To mark the lives and contributions of disabled children and young people with LL/LTIs.
Arts, Architecture, Activism & Access: Taking Around the Toilet to New Spaces (AHRC) (2017-2018): Over the last two years, the Around the Toilet team have been working with various communities – including trans, queer and disabled people – to explore the ways that toilets can exclude some, whilst including others. A lack of access to suitable toilets affects people’s lives in all kinds of ways; exclusion from toilets often connects to wider social and spatial exclusion and segregation, as well as personal discomfort. The New Spaces project focuses on impact and engagement activities to help us develop this research further. The project has three strands: 1) working with queer and disability arts organisations and events internationally; 2) sharing our Toilet Toolkit design solutions with trainee architects and design professionals; and 3) exploring toilets creatively with children and young people.
Touretteshero (Wellcome Engagement Fellowship 2017-2020): Founded by Jess Thom and Matthew Pountney, Touretteshero is a vibrant organization that aims to celebrate and share the creativity and humour of Tourette’s Syndrome in accessible ways. At the core of its work, Touretteshero raises awareness of the challenges people with Tourette’s face, but embraces humour and creativity in its approach in order to take ownership of the laughter typically associated with the condition – to provide a genuinely funny cultural alternative. This accessible, yet radical proposition informs and underpins Touretteshero’s philosophical, artistic and practical approach to its Wellcome Engagement Fellowship, a key aim of which is to continue to make cutting edge, creative and innovative contributions towards thinking about disability and its many intersections, at the same time as engaging diverse audiences both inside and outside of the Academy. Touretteshero will connect the arts, academia, and research in pioneering ways: a series of creative exchanges will bring together people with professional, scientific and lived expertise, building evidence of approaches that support communities to be curious, questioning and engaged with disability, self and society.
Storying Our Chemical Lives (Social Sciences and Humanities Research Council of Canada and Faculty of Community Services, Ryerson University, Toronto, Canada): Currently, Storying Our Chemical Lives is a series of small pilot projects incorporating Thinking with our Chemical Stories, ChemicalLives (Festival of Social Sciences 2015), as well as a series of international workshops (e.g. like this one). All people encounter chemicals – legal and illicit, helpful and harmful – in myriad and complicated ways. This is particularly true for disabled people who rely on prescribed and generic chemicals for everyday functioning. Framing ‘chemicals’ as an open category, we are interested in everyday encounters with substances ranging from pharmaceuticals, street drugs, environmental pollutants, cosmetics and beyond. Narrative studies of chemical lives include the ‘storied lives of chemicals’; stories of chemical use within identified populations and ‘toxic tales’ of involuntary chemical exposure. These lines of inquiry position disability as an undesirable outcome of our chemical lives, and consequently a site of a precarious, dangerous or obliterated future.
Learning disabled people’s intimate lives: Accounting for Austerity (2016) (Wellcome Trust) (2016 – 2017) This project culminated in a two-day participatory Research Meeting, The Intimate Citizens Project, for self-advocates (people with the label of learning disabilities) and their organisations, and academics, practitioners and researchers, in which we used design fiction methods to critically explore and identify the significant impacts of recent austerity policies upon the intimate, sexual and emotional lives of people with learning disabilities. See here for more information.
Development of National Standards for young people’s palliative care across the UK: Talking about Sex, Sexuality and Relationships: Guidance and Standards (2016) (Open University/Together for Short Lives) (2012 – present): For the first time, Sexuality Guidance and Standards have been developed by The Open University’s Sexuality Alliance (of which I am a member) to assist staff in giving sexual support to young people with life-limiting conditions (sic). This ground breaking guidance is currently being disseminated to young people’s hospices and respite care facilities across the UK. You can access the guidance itself here.