Experts by experience: Dementia activism as performance
Dementia has been a growing part of the Australian social consciousness for several decades now, intermittently coming into prominence with events like the legalisation of voluntary assisted dying (under Victorian and Western Australian law) and the Royal Commission into Aged Care Quality and Safety, to give two recent examples. While conversations around such events invariably engage with concerns for people with dementia, people living with dementia are rarely given the space to contribute to these dialogues themselves. A large majority of people with dementia are over 65 – already a marginalised group – and the cognitive decline associated with dementia sees their position devalued further. In this paper, I will consider dementia activism as performance, examining the characters, ‘victims’ and ‘villains,’ vernacular and dialogue, mythologies, and shared stories that emerge. Some of these have emerged on social media platforms. Talbot et al. (2019) analysed the Twitter accounts of 12 people living with dementia, identifying six themes: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. Many will recognise parallels with broader disability activism – especially in the use of ‘nothing about us without us’ – a more established area of activism led by those to whom it directly pertains. Another theme, ‘experts by experience,’ emphasises the absence of those with lived experience of dementia from key conversations. With regards to vernacular, Australian dementia activist Kate Swaffer has preferred language around her condition that has not been widely adopted; instead, certain problematic language persists in governmental, journalistic and lay dialogue. This paper will begin laying a contextual foundation for a potential project that would use the arts and storytelling as a means to bring people living with dementia into the conversation, to have a more active role in conversations about dementia, socially and legislatively.
Dr Morgan Batch is a sessional academic based at the Queensland University of Technology (QUT). Her PhD (conferred in 2019) studied the representation of dementia and people living with dementia in contemporary theatre, with a particular focus on work outside the traditional dramatic convention. She has a passion for theatre that makes use of any and all theatrical tools available to practitioners to tell diverse stories. Her broader research interests lie in representations of neurodiversity in performance and popular culture.