Understanding Adult Cerebral Palsy Policy Reality Through a Temporal Lens

I am excited that some of my PhD results are being presented at the EACD pre-conference ‘A Lifespan Approach to Disability’ today.

My PhD aimed to understand the everyday experience of adults with cerebral palsy (CP) living within complex policy environments. Adults with CP must often navigate fragmented cross-sector policies to participate in society on an equal basis to others. However, their lived experiences of these environments, and the everyday toll these demands take, are often overlooked. I combined lifeworld research with creative methods to explore the personal meaning of these experiences. The findings suggest policy realities can profoundly impact well-being and personhood.

Today’s presentation looks at the PhD results through a temporal lens. Temporality refers to existing in a relationship with time and is recognised as playing an important role in establishing identity (Sokolowski, 1999). Although it concerns experiences in the past, present, and imagined futures (Ashworth, 2003), it disrupts the perception of time as a linear progression (Cox, Prior and Nolan, 2025). There were three kinds of temporality that were pertinent to the results: ‘polytemporality’- the past remaining present (Cooper, 2020); hauntology – ghosts appearing from the past (Derrida, 1994); and ‘distemporality’, or ‘temporal disjuncture’ - feeling suspended and not belonging (Cowtan, 2023).

Against expectations and instructions, all participants drew on childhood stories to make sense of their present. One story described total exclusion from sport and school PE: being placed on a plinth in the gym's corner, passively receiving physiotherapy while classmates played in the centre. As an adult, she discovered sport by chance at the 2012 London Paralympics, watching dressage and realising, ‘I Could Do This’. She did, and has since become an accomplished sportswoman across several sporting fields.

This participant chose to create a wall mural to explore the meaning of her childhood experience. We used a triptych to represent different time zones. The central panel shows her current, empowered self as a sportswoman. The right-hand panel depicts her as a child, relegated to the corner, with a possibly ironic smiley face. Yellow paint splats represent carefree classmates. The left-hand panel is her adult perspective reflecting on the past, with anger symbolised by a bullet hole, repeated as an ever-seeing eye in the centre. The shard of glass cutting across all three panels represents the lasting impact of these experiences.

The presentation goes on to explore further PhD findings: that hidden trauma could be more commonplace than previously realised; and that being 'othered' and/or patriarchal overshadowing may lead to lifelong distrust in figures of authority.

The PhD results call for urgent attention to the lasting impact of childhood policy experiences on adults with cerebral palsy and highlight the need for policy reform to address lifelong well-being.