Yesterday, the Living Life to the Fullest Project held its first ever Research Management Team meeting at Manchester Metropolitan University. It was wonderful to see such an expansive team – our community research and impact partners from disability, arts and digital organisations, and academics, parents, supporters and allies – in the same room for the first time. We began the meeting by recognising the important collaborative and development work that has already taken place to get to the point of a funding award. Interestingly, throughout the period of collectively putting the bid together, our core interests have stayed strong and true to original ideas (see our short film, Living life to the Fullest (2015))
In short, we are committed to working in collaboration with disabled young people. We centre the arts as the means to tell different stories of disability, whereby it isn’t a problem to be solved, or a tragedy. We advocate for Living Life to the Fullest to be a space where new, affirmative understandings of disability emerge – a valued part of the self, identity, family, community and civil society. However, we seek to do this in conversation with young people and their families, in ways that do not gloss over the realities of their everyday lives and experiences of discrimination, exclusion, disablism and hardship. Experiences ever-present in these precarious times of austerity and instability. Ultimately, the focus of Living Life to the Fullest is on the lives, hopes, desires and contributions of disabled young people with life-limiting and life-threatening impairments (LL/LTIs) (sic).
We also had some useful discussion that documented what individual members of the Research Management Team will bring to the project, past their time and expert knowledge. We also spent time considering our existing employment, community and activist networks and who we might want or need to know about the project: are there any organisations not in the room that should or could be? Who else might we connect with and why?
Later, we reflected upon the proposed arts methods we will use in the project, led by the wonderful Purple Patch Arts, and also began conversations about methods of recruitment – ways to present the research to young people and families; key spaces of access; and how we can articulate the research to a range of publics. You can read about our first steps with recruiting young co-researchers and participants, and get involved if you want to.
The meeting embodied co-production in action: as a team we are stronger together to carry out high quality, relevant and meaningful research with young disabled people and their families and allies. Community research partner Jon Hastie, who along with Mark Chapman founded DMD Pathfinders, a user-led organisation that promotes choice, control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK said of the meeting,
“The research meeting was a fantastic opportunity to meet the other members of the research team and share our ambitions for the project. There was a real sense of enthusiasm and passion for empowering young people to talk about their lives in ways that are meaningful to them. There was a remarkably rich and diverse mix of lived and academic experience in the room which will be key to realising the project directives. We at DMD Pathfinders were delighted to contribute our own perspectives and are very excited about the opportunity to coproduce this research.”
If you would like to keep up to date with the project as it happens, see livinglifetothefullest.org! If you have any questions, don’t hesitate to get in touch.