This year’s Artists Open Houses festival in Brighton featured artworks from Unchartered Togetherness – a co-creative art group of research, healthcare, sports and arts professionals who formed as part of Brunel University London’s Gemma Cook’s PhD – which raise some of the contradictory and emotional issues experienced by adults living with cerebral palsy.
Titled Unchartered Togetherness, the artworks were launched at a private viewing at Brighton’s famous moving observation tower, the i360, on 6 May, followed by a week-long exhibition until 14 May.
Cerebral palsy (CP) is usually known as a childhood condition which affects movement and other daily activities. But improvements to life expectancy mean that there are now an estimated three times as many adults living with CP as there are children.
The members of the group include: Richard Luke, the CP programme lead for the disability charity Scope; Emma Livingstone, the found of charity ‘Up – The Adult Cerebral Palsy Movement’ and a speech and language therapist; and Natalie South-Law, an accessibility activist and competitive sportswoman. They are all adults living with Cerebral Palsy.
Brunel’s Gemma Cook is a doctoral researcher and an artist with a neurological physiotherapy background, and whose PhD involves using art to explore the meaning of human experience and raise understanding and awareness.
“It was partly serendipity, but also being present to opportunity, that allowed this group to form at a very dynamic time for cerebral palsy,” explained Cook. “The recruitment process of my PhD meant I could only have a small research group, ideally as mixed in presentation as possible, and important that each member was interested in art and up for a challenge.
“I had known each member through other related research projects prior to this one, which probably helped to begin building the trust which was vital to the success of the project. As well as the fact that we are all passionate about influencing positive change for Cerebral Palsy.
“The artworks they’ve created raise some of the contradictory and emotional issues they experience as adults living with cerebral palsy, such as having a sense of gratitude and resentment at the same time. And feelings of being unseen, unheard and unimagined.”
Three artworks were exhibited in Brighton: a wall mural with an accompanying spoken word performance and a poetry film.
The wall mural and spoken word performance, It’s That Girl With CP, explore Nat’s experience of being excluded from sport as a child. She looks back from an adult’s perspective and reflects on the paradox that she is now a successful athlete.
The wall mural
The poetry film, Unchartered Togetherness, is a composite piece made up of three voices – Emma, Richard, and Nat – and explores some of the complex issues that are part of living as an adult with CP. Adults living with CP are often dependent on multiple state services at any one time and throughout their lives. Each service tends to have a separate policy, leading to a fragmented environment that is challenging to navigate. The poetry film explores the meaning of living in this ‘policy reality’.
“I chatted with some of the people attending the event and they were surprised at how powerful both Nat’s spoken word and the poetry film were,” said Cook.
“People with different disabilities expressed how much Nat’s experience as a child resonated with theirs, and were very grateful to her for being brave enough to express her story so directly.
“Others said how powerful they found the poetry film and were curious about where we were going to take it next. One person suggested having it played in cinemas and another thought it was worthy of a news piece.”
Closely linked to this work, Cook and other researchers interested in CP created an animated video which highlights how hard it is for adults with CP to get the physiotherapy help they need, and recommends ways in which future services could be shaped.
Watch It’s That Girl With CP & Unchartered Togetherness on YouTube
Reported by:
Joe Buchanunn,
Media Relations
+44 (0)1895 268821
joe.buchanunn@brunel.ac.uk