The Canine Care Project (2019-2020): The Canine Care Project was a small research project that explored the experiences of disabled young people who have assistance dogs. 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.
- 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-production 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.
Please check out our brilliant animated film, animated by Tom Hudson, on YouTube here.
Life, Death, Disability and the Human: Living Life to the Fullest (ESRC) (2017-2020): Living Life to the Fullest is funded by the Economic and Social Research Council (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.