Unchartered togetherness: Understanding policy reality as experienced by adults with cerebral palsy

Abstract

Adults with Cerebral Palsy (CP) are obligated to navigate complex policy environments to participate in society on an equal basis to others. Although some research has considered the lived experience of navigating complex single-sector policy environments, such as healthcare, the overall multi-sector policy experience has not been explored. This study aimed to fill this gap, through combining arts-based research and lifeworld-research, and to critique the value of what evolved to be a unique research approach. The study comprised two groups of participants: the ‘co-creators’, three adults with CP and CP community leaders; and the ‘audience’, fifteen adults with CP and / or policy stakeholders. Data collection started with co-creator creative-workshops that resulted in a spoken-word performance, a wall-mural and a poetry-film. Audience involvement followed with an artwork screening, a question-and-answer session with the co-creators, and mini-interviews. Thematic analysis was used to analyse the datasets. The findings inferred that policy had a direct and dramatic impact on the personhood of adults with CP. The co-creator’s policy experiences meant wayfaring through multiple barriers and confusing contradictions in the face of tenacious stigma which required relentless renegotiation of identity. Understanding policy experience proved temporal and involved returning to childhood memories to make sense of adulthood. A strange belonging was felt alongside pride and positivity and sense of purpose to effect progressive change. The audience deepened meaning by identifying and further unpacking concepts around the discordant nature of policy environments, revealed to be multicentric, lacking in leadership, with a suggestion that unintended policy outcomes may be going unseen. Combining arts-based and lifeworld research enabled heuristic learning and knowledge transfer. Framing these with critical realism and human rights definitions, facilitated a systematised investigation into an ambiguous topic, resulting in a contextual kaleidoscope of multiple perspectives and layered meaning that proved suited to researching social worlds.