Yesterday we held our 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, rather than through computers screens, Skype windows or email addresses. We began the meeting by recognising the important collaborative work that has already taken place to get to the point of a funding award. Interestingly, throughout this development period of working up ideas and 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) here).
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. Instead, we want Living Life to the Fullest to be a space where new, affirmative understandings of disability emerge, that for many it can be a valued part the self, identity, family, community and civil society. However, we seek to do this in conversation with young people and 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).
This was followed by introductory presentations from our three primary partner organisations: Good Things Foundation, DMD Pathfinders, and Purple Patch Arts.
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. For example, things like resources, contacts, networks, links, social media channels, access/relationships to/with multiple communities, a range of experience/s and skills, media savvy and relationships to broadcasters, and self/advocacy. 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? This was helpful towards thinking about how the Research Management Team will develop throughout the research process, dependent upon the needs of the project as it goes forward.
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. We questioned the best ways to approach and recruit parents and/or young people to participate in the project, what different emphases and expectations there might be, and what it might be important to think about or be aware of when recruiting and interviewing. You can read about our first steps with recruiting young co-researchers and participants, and get involved if you want to here.
We ended with a short conversation about the impact of (changing) policy in the lives of young disabled people and across our organisations: which policies touch, or have impact, in our lives? What kinds of impact might our research make to current or future policy? And, more plainly, why does policy matter? Of course policy does matter, and it is a key aim of Living Life to the Fullest to broadly influence policy and engage with policy makers, but it was a helpful first step to draw together a list of relevant policies to inform the writing of a policy review.
In short, 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.”
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