What is Living Life to the Fullest?
The Living Life to the Fullest project is a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs). With children and young people alongside as our co-researchers, the project will be a space where disabled children and young people can tell new stories of disability; their own stories.
Why is this research needed?
Our culture has some problematic ideas about disability and disabled people’s lives, particularly the lives of disabled children and young people with LL/LTIs, which can be shorter than most. Quite often, people think that disabled children and young people live tragic, sad and unhappy lives without opportunities for play, socialising and friendships. Through engagement with the arts, this project aims to offer opportunities for disabled children and young people with LL/LTIs to speak about their lives in “new” ways: as joyful, creative, fun, challenging, but ultimately liveable, just like anyone else. This is important because knowledges about life with LL/LTIs rarely come from disabled children and young people themselves.
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.
How can I get involved?
Please see here for the many ways you can get involved.