Royal Central School of Speech and Drama
MA, PhD Candidate
Project Title
Digital storytelling and Applied Theatre for Young People with JIA: Invisible Disability, Transition, and Performative Media.
Project Key words: Juvenile Idiopathic Arthritis; Health; Digital; Transition; Participation; Theatre.
Abstract
My research explores the process of medical “transition” that young people with Juvenile Idiopathic Arthritis (JIA) go through when moving from a paediatric doctor to an adult rheumatologist. This process occurs any time from the ages of eleven up to twenty-five years old and enables young people (in this case with JIA) to have autonomy over their health care decision making. Evidence shows that there are many reasons why this process fails. In 2014 the National Rheumatoid Arthritis Society found that up to 42% of young people in transition rebel against medication taking, leaving them in serious pain or hospital. My research is manifold; at a theoretical level, I will engage with definitions of disability and performativity. This will be explored through practice research which will investigate the impact of theatre and arts on transition. My enquiry seeks to acknowledge the complex relationships that young people have with their JIA, often termed as an ‘invisible disability’ and to ascertain the extent to which the visibility of their disability impacts on both their own and society’s understanding of what disability can comprise. The research findings will be relevant to other scenarios where young people with chronic illness go through transition, for example, young people with Cystic Fibrosis who fail to transition successfully have an increased rate of morbidity. Transition is a crucial process to navigate for any young person with a lifelong chronic illness.
Key Research Questions
Research objectives include: understanding what transition means to the young people with JIA (whereby they move from a paediatric to an adult rheumatologist); the impact that arts in health (whereby artistic practices are used to promote health and wellbeing) and applied theatre can have in keeping young people engaged in their transition journey; the efficacy that digital storytelling can have in creating alternative places where transition experiences can be shared.
Key Publications
2019. ‘Joint(s) Working.What young people with Arthritis don't want to say about transition in health care’. Conference presentation, Storytelling for Health 2: Patient Voices, University of South Wales.
2019. ‘The Death of the Newsfeed. Storytelling on Instagram for Gen-Z’. Promax Conference, Amsterdam.
2014. Filmmaker/Researcher, Talawa and EEA in conjunction with Goldsmiths University, London, ‘Creating Routes’. This conjunction of MA and participatory practitioners culminated in a research conference and my original research film being shown at Goldsmiths, University of London.
2012. ‘The Emergence of ‘Digital Negotiators’: Incorporating Technology into Applied Theatre Practice,’ Performing Research – annual conference of performance research for MA students, The Royal Central School of Speech and Drama.