‘Talking back, talking out, talking otherwise’: dementia, access and autobiographical performance

ABSTRACT

This article interrogates access through the lens of public autobiographical performances by people living with dementia who, not generally construed as subjects in Western cultures, rarely appear on public stages. This scarcity underscores a strong connection between access and subjectivity, as well as between access, political distributions of visibility and aesthetic practices: all areas insufficiently theorised in access hermeneutics. Deploying one case study, ‘To Whom I May Concern’, a modality operating in virtual and live performance spaces, I expose access issues to do with the autobiographical performance genre along with the opportunities for resistance to power it affords.

KEYWORDS:

• Dementia
• access
• autobiographical performance
• subjectivity

Disclosure statement

No potential conflict of interest was reported by the author.

Notes on contributors

Janet Gibson is the Program Manager, Communication, at UTS: Insearch. Her research interests lie in the nexus between narrative, dementia, and the creation of identity with a focus on reality theatre productions and applied performance practices which use words and stories from older adults living with dementia.

ORCID

Janet Louise Gibson http://orcid.org/0000-0003-0130-6223

Notes

1. However, personas are adopted by some performers, and in some recent ‘meta-autobiography’, the autobiographical lives represented are those of fictional characters who create themselves ‘via performative means in the provisionally real worlds of the plays in which they appear’ (Martin 2015, 137).

2. Though the term theatre is used sometimes throughout this paper, the term performance is preferred as it embraces a wide range of direct address practices emanating not only form the theatre but also from the visual and other performing arts (Pearson 2010, 1)

3. Over approximately the last decade, changes have started to manifest. Among other public activities PLWD are writing books, speaking out at conferences and public events, and participating on boards. Some examples are Kate Swaffer (Australia), Jim Mann (Canada), and Terry Pratchett (United Kingdom). See Bartlett and O’Connor 2010, for more on this type of activism. However, I note that although ‘the above activists’ are representative of both genders, many of them are either high profile people and/or they are people privileged by higher socio-economic status through their race or class.

4. According to Maureen Matthews (in an email conversation with the author on 31st August 2017) this phrase is from a participant in a group that met in 2008 at the Alzheimer’s Association, Westchester Chapter. It was on the original website which has since been deleted (see To Whom I May Concern 2013b).