In 2014 Bill Mumford, then CEO of a national learning disability charity approached me wanting to mark the charity’s 50th anniversary. I had just returned from Everest Base Camp as part of an autism fundraising mission and Bill was a bit of an Everest pioneer having led a group of people with learning disabilities to Everest in 1994. Bill knew of my work with another charity which I had left seeking a better work-life balance.
Bill was clear he didn’t want a corporate self-congratulatory celebration. We were both fascinated by the work that many frontline support workers do to make a difference to the lives of people with a learning disability and autism. I had recently become guardian to my older brother who has autism, and overseen his move from a long-term life in institutional settings and paternalistic, impersonal treatment to supported living where he had become a tenant in his own home with a team of people that enabled him to achieve his potential. Bill had been trying to understand what makes a good support worker in his own organisation. So we agreed that the anniversary year should be about highlighting just what can be achieved when people are supported to have the same opportunities as anyone else to live their life to the full.
I put together some ideas around communicating the personal stories of people with a learning disability and autism and the people that support them. I had just written a short story about my brother’s life and been asked to talk to families about my experience and realised that families needed to hear that their loved ones deserved and could achieve a better life with the right support.
Given the power of photography as a medium, I wondered if there was a way to capture moments that matter in the lives of people with a learning disability and autism. Through a partnership that has lasted almost two years, I was able to team up with the brilliant and compassionate photographer Polly Braden, who travelled the country observing and capturing images and stories of people’s daily lives as well as major milestones, from going to the local shops and catching a bus to graduating from high school and getting married.
At first we weren’t sure what ‘a good life’ would look like on film but as time progressed it became more obvious. It was no different than for anyone else – having connections with people in our daily lives, being able to make choices and having some sense of control, be it relative to our capacity, being able to enjoy life, participate and be included. These are things that many of us take for granted yet many people with a learning disability and autism continue to come up against barriers and difficulties in trying to enjoy these same simple things.
I’m really proud of the Great Interactions Book and Exhibition at the National Media Museum. Polly has truly engaged with the people she has photographed and whose stories she has captured. With so many people affected by or who know someone with a learning disability or autism, I have been touched by the amount of goodwill and encouragement from people outside the project whose individual contributions have made such a difference to the end-result.
It is through my work with Bill, Polly and many other visionary policymakers, academics and individuals that I was inspired to apply for a studentship at the University of Cambridge to undertake PhD research examining and evidencing the role of frontline support workers in enabling people with a learning disability to live a better life. I am grateful to the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care East of England for awarding me the full funding to undertake the 3-year research through the Cambridge Intellectual Developmental and Disabilities Research Group in the Department of Psychiatry. It is my ambition that this research will provide critical insight and evidence that will influence social care policy and practice and ultimately contribute towards improving the lives of people like my brother and the people in the Great Interactions book.
Click here for further information about my research.