The Loss of Small White Clouds: Dementia in Contemporary Performance [1 ed.] 9781003282037, 9781032252018, 9781032252025

Table of contents :
Cover
Half Title
Series Page
Title Page
Copyright Page
Contents
Acknowledgements
Introduction
Contextualising dementia
Dementia as a loss of self
Dementia narratives in theatre
The theatrical canon and dementia
Contemporary performance
Useful terminology
The performances and discussions in this book
Notes
References
Cited performances
Part 1: "We're All in Our Own Little World": Inside Dementia Experiences
1. Dementia from the Inside: The Father and Autobiographer
The Father and Autobiographer
Time
Place/space
Character's relationships
Two approaches to the interior experience
Notes
References
Cited performances
2. Research-Based Performance: Inside Out of Mind
Research-based performance about dementia
Anne Basting, TimeSlips™, and Time Slips
Research-based work deployed for education
Verbatim theatre
Inside Out of Mind
In the world of healthcare workers
Nursing (un)homely homes as narrative settings
Demarcation
In the world of people with dementia
Inside Out of Mind's several objectives
Notes
References
Cited performances
3. Social Narratives and the Family as Microcosm: Really Old, Like Forty Five
The prevalence of the dementia family drama
Really Old, Like Forty Five
Political medicine
Outsourcing care
The family as microcosm
The "brilliant sufferer" trope
Generational discourse
Endings: A failed deus ex machina
Notes
References
Cited performances
Part 1 Summary
Reference
Part 2: Active and Passive Embodiment
4. Transforming the Domestic Space: Sundowner and 1 Beach Road
Dementia and embodiment
Sundowner and 1 Beach Road
Transforming the domestic space
Peggy's dementia: Sundowning and embodied memories
Embodied yet ephemeral
Jane's dementia: Doctor's visits and erosion
Natural disaster metaphor
Embodied relationships
Endings and the "right kind" of dementia story
Notes
References
Cited performances
5. Puppetry and Dementia: It's Dark Outside and D-Generation: An Exaltation of Larks
Introduction to dementia puppetry works
It's Dark Outside: Visual theatre and another dementia metaphor
D-Generation: Stories from dementia and co-presence
Co-presence, embodiment, agency
It's Dark Outside ending: The "right kind" of dementia story re-emerges
Notes
References
Cited performances
Part 2 Summary
Part 3: Postdramatic Theatre: Radical Alternatives for Staging Dementia
6. Experiential Performance: Memory Point(s)
Postdramatic performance and dementia
Applied performance projects
Memory Point(s)
Development: Memory Point(s): The Beauty of Remembering
The sequence of the work
Time lost
Experiential and dichotic
Notes
References
Cited performances
7. Problematising Dementia: Sul Concetto di Volto nel Figlio di Dio
Religious themes in performances about dementia
Postdramatic work: Samantha Bews
Dramatic theatre: Abi Morgan's 27
Sul Concetto di Volto nel Figlio di Dio
Hyper-realism to iconographic metaphor
A failed deus ex machina
Notes
References
Cited performances
8. Dementia and Creative Agency: RUFF
Conjuring co-stars and filling the "empty spaces"
Placelessness: Nowhere and everywhere
The irrupting real and reconfigured care dynamics
Extratextual demarcation
RUFF as pathographic performance
Considerations for creative agency in dementia
Notes
References
Cited performances
Part 3 Summary
References
Conclusion: Dementia, the Theatre Ontology, and Opportunities
The particularity of theatre (for representing dementia)
Conclusions
Recent developments
Where to from here?
References
Cited performances
Glossary
Plain language chapter summaries
Bibliography of works
Index

Citation preview

Routledge Series in Equity, Diversity, and Inclusion in Theatre and Performance

THE LOSS OF SMALL WHITE CLOUDS DEMENTIA IN CONTEMPORARY PERFORMANCE Morgan Batch

The Loss of Small White Clouds

This volume seeks to instigate a discussion about dementia in theatre. The discussions in this book borrow from the literature on dementia’s representation in other artforms, while reflecting on theatre’s unique capacity to incorporate multiple artforms in a live context (hypermediacy). The author examines constructions of diegesis and the use of various performance tools, including physical theatre, puppetry, and postdramatic performance. She discusses stage representations of interior experiences of dementia; selfhood in dementia; the demarcation of those with dementia from those without; endings, erasure, and the pursuit of catharsis; placelessness and disruptions of traditional dramatic constructions of time; and ultimately, performances creatively led by people with dementia. The book traces patterns of narrativisation on the stage—including common dramaturgical forms, settings, and character relationships—as well as examples that transcend mainstream representation. This book is important reading for theatre and performance students, scholars, and practitioners, as well as cultural studies writers engaged in research about narratives of dementia. Morgan Batch is a Sessional Academic with the Creative Industries Faculty at Queensland University of Technology, Australia.

Routledge Series in Equity, Diversity, and Inclusion in Theatre and Performance Series Editor: Brenda Foley

The Equity, Diversity, and Inclusion (EDI) book series is an interdisciplinary forum for exploring diverse identities, concepts, practices, and people in theatre and performance. Through the series, the Theatre and Performance division at Routledge aims to expand its current offerings, in response to an overwhelming call to action by participants in the field. The new series reflects both a structure and an ethos, cutting across existing Routledge categories of theatrical produc­ tion, theatre studies, and research monographs as a means to increase visibility and address the historical exclusion of marginalised voices. The EDI series’ commitment to diversity includes—but also extends beyond—that which we know to be lacking in the field of theatre and per­ formance. We welcome proposals that expand our perspectives and that of the field and look forward to reading your submissions. Plays of Our Own An Anthology of Scripts by Deaf and Hard-of-Hearing Writers Willy Conley Stages of Reckoning Antiracist and Decolonial Actor Training Amy Mihyang Ginther Out of Time? Temporality in Disability Performance Elena Backhausen, Benjamin Wihstutz, Noa Winter Dancing Motherhood Ali Duffy For more information about this series, please visit: https://www.routledge. com/Routledge-Series-in-Equity-Diversity-and-Inclusion-in-Theatre-andPerformance/book-series/EDI

The Loss of Small White Clouds Dementia in Contemporary Performance Morgan Batch

First published 2024 by Routledge 4 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 605 Third Avenue, New York, NY 10158 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2024 Morgan Batch The right of Morgan Batch to be identified as the author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library ISBN: 978-1-032-25201-8 (hbk) ISBN: 978-1-032-25202-5 (pbk) ISBN: 978-1-003-28203-7 (ebk) DOI: 10.4324/9781003282037 Typeset in Bembo by MPS Limited, Dehradun

Contents

Acknowledgements Introduction

vii 1

PART 1

“We’re All in Our Own Little World”: Inside Dementia Experiences

21

1

Dementia from the Inside: The Father and Autobiographer

23

2

Research-Based Performance: Inside Out of Mind

47

3

Social Narratives and the Family as Microcosm: Really Old, Like Forty Five

70

Part 1

Summary

92

PART 2

Active and Passive Embodiment 4 5

Transforming the Domestic Space: Sundowner and 1 Beach Road Puppetry and Dementia: It’s Dark Outside and D-Generation: An Exaltation of Larks

Part 2

Summary

95

97 119 140

vi

Contents

PART 3

Postdramatic Theatre: Radical Alternatives for Staging Dementia

143

6

Experiential Performance: Memory Point(s)

145

7

Problematising Dementia: Sul Concetto di Volto nel Figlio di Dio

164

Dementia and Creative Agency: RUFF

182

8

Part 3

Summary

201

Conclusion: Dementia, the Theatre Ontology, and Opportunities

203

Glossary Plain language chapter summaries Bibliography of works Index

216 220 223 228

Acknowledgements

For Ellen and Pat Batch and Arthur and Phillis Vonhoff I wish to thank my parents and siblings who are enduringly supportive and consistently offer humour. I must thank my PhD supervisors Bree Hadley and Caroline Heim for their guidance throughout my PhD and beyond. Caroline’s advice was also integral during the process of developing this book. I also wish to acknowledge the members of the “Theatre friends Shut Up & Write” group—the weekly Zoom meetings in my calendar were an effective reminder that I should be writing. I enjoyed tuning in on a Wednesday for some counsel, motivation, and camaraderie. Great appreciation goes to Dr Kelly Palmer who edited the book. And, finally, to my husband Mark. Thank you for your support, reassurance, and for always offering your wonderful insight.

Introduction

Performances featuring dementia in their narrative have gradually gained popularity over the past two decades. Go searching for stories with dementia subplots and you will find a (perhaps) surprising number dating back decades. Before then, even, there were narratives featuring cognitive decline, age-related and otherwise; the term “dementia” may even have been attributed, especially by its older and broader definition, as “out of mind.” From the beginning of the 21st century, dementia began to appear as a main narrative driver in more plays. The mid-2000s in particular saw a marked upsurge in performances in which dementia was at the centre, not a mere subplot. This was driven by a growing global interest in dementia (which Aagje Swinnen and Mark Schweda (2015) identify as a “dementia boom”) but also followed decades of activism by people with dementia and their allies. By the early 2010s, more performances were produced that play with the live performance form. Both the upsurge and the development of the form have been facilitated by funding from arts bodies as well as dementia/Alzheimer’s organisations or companies with a broader medical-topublic communication agenda, for instance, the Wellcome Trust. The era in focus in this book—the early 2010s—therefore represents a crucial point in the development of theatre about dementia, where we see characters with the condition at the centre of the narrative as well as experimentation with form and dramaturgical variety. This book discusses these live performances as sites of exploration for dementia narratives. For several decades now, dementia diagnoses have reportedly been on the rise. Statistical reporting on dementia frequently illuminates the prevalence of the condition, its financial strain on both families and national economies, and personal implications for the individual and those around them. The graying of society and the risk it poses in the form of far-reaching economic and social repercussions are today made public through an onslaught of media reports, the contents of which are based, sometimes loosely, on professional documents of various kinds. (Lock 2013, 12)

DOI: 10.4324/9781003282037-1

2

Introduction

Medical anthropologist Margaret Lock points out that the statistics used (for example, how many people are estimated to have been diagnosed with dementia by the year 2050) are “designed to incite political action and increase funding for AD [Alzheimer’s disease] research” (2013, 12). I purposely do not repeat any such statistics in this book. These cultural concerns about dementia at a broad statistical level often overshadow individuals with the condition. Tragic narratives of dementia driven by overwhelming statistics have become manifest in media and art. So, it is important to consider how theatre performances may aid in perpetuating or dispelling such narratives. Social gerontologist Hannah Zeilig states that academics have acknowledged the significance of “exploring stories about dementia,” adding that when “these narratives are scrutinised they can help to uncover truths about how a society imagines, and most importantly, how it engages with the people who live with a dementia” (2015, 13). Encompassing language, image, sound, and moving bodies in a live environment, where audience and performer share bodily presence, theatre has the capacity for the live exchange of meanings, a potential conduit for expressing or challenging existing stories about dementia. Journalistic media and the arts have tended to represent dementia in ways that perpetuate the stigma of the condition and those living with it. Linguists Jacqueline Guendouzi and Nicole Müller (2006) present an analysis of dementia in the media that reveals a predominantly negative angle. In her 2013 book on the “Alzheimerisation” of the euthanasia debate, Megan-Jane Johnstone—a researcher in nursing ethics—recognises that journalistic media can strongly influence the public’s view of dementia. Not 20 years ago, sociologist Gillian McColgan wrote that “[d]espite a definitive research focus on finding the social meaning of dementia developed over the last decade, lack of understanding and negative popular representations of dementia persist” (2004, 169). I would argue that things have shifted, though more nuanced stories about dementia are still needed. Performance scholar Janet Gibson finds that The ‘crisis’ story works to alarm and panic the public, sell newspapers, and garner money for biomedical and pharmacological research. However, it does not help to alter the status of those living with the condition. Nor does it shift the focus towards the ethical responsibilities we as care partners,1 or indeed as spectators, have in this so-called crisis. (2020, 44) Contextualising dementia Dementia is difficult to define succinctly because of its historically changing meaning and the powerful connotations that the idea of dementia evokes. The original meaning is “out of the mind” from the Latin de mentis, and the word has since been the subject of “subtly changing psychiatric, biomedical, and socio/ cultural stories” (Zeilig 2014a, 260).2 Gloria Sterin—a researcher who was

Introduction

3

diagnosed with dementia—contests the use of the word dementia itself, as it “implies a very derogatory and negative circumstance. Negative in the sense of implying something less than human” (2002, 7). (Her paper appears in the very first issue of the journal Dementia, founded by John Keady and Phyllis Braudy Harris, which remains a site of critical social research on dementia.) I use the term dementia throughout this book as a recognisable label. It is an effective umbrella term for the syndrome that can result from over 200 subtypes, including Alzheimer’s disease (after scientist Alois Alzheimer who first identified its neuropathology), vascular dementia, frontal lobe dementia, dementia with Lewy bodies, and alcohol-related dementia.3 Broadly, the syndrome of dementia is clinically associated with cognitive decline that affects memory (both short term and long term), language (difficulty with both comprehending and expressing and sometimes resulting in repetitive utterances), and behaviour. Notable behaviours can include delusions, agitation, disinhibition, diurnal rhythm disturbances (day-night reversal), sleep and appetite disturbance, and personality and mood changes. However, behaviour changes related to dementia are not limited to these adverse symptoms. The medical narrative of dementia emphasises decline and loss. The focus on adverse changes is an aspect of the medical paradigm that draws ire from some advocates and cultural and social studies researchers. As early as the late 1980s, social researchers recognised the dominance of the biomedical model in framing dementia (Lyman 1989; Robertson 1990; Kitwood 1997; Bender and Cheston 1997).4 The parallels to disability advocacy are not coincidental.5 In medical writing, historically, the disease is the subject, and the patient is the object, a paradigm in which the individual may be overshadowed by a diagnosis (Innes 2009), and a discourse by which the individual is made passive. Individuals may “come to be defined by misunderstood behaviors, as the wanderer, the screamer, the hoarder, violent, non-compliant and so forth” (Dupuis, Wiersma, and Loiselle 2012, 163). Ann Robertson adds a crucial point: “By framing the ‘problems of aging’ and therefore the solutions as biomedical, this view of aging ignores nonmedical issues such as poverty, isolation, the loss of role and statusand thus effectively depoliticizes the problems of aging” (1990, 430). One positive aspect of biomedicalisation, according to Lock, is that the condition’s causation may be “neutralized,” that is, the onus is taken off the individual (2013, 14). Still, while the biomedical model views behaviours “through the lens of disease or sickness,” social and psychosocial approaches “conceptualize behaviors as the result of the interaction between personal and social/environmental factors” (Dupuis, Wiersma, and Loiselle 2012, 163). Thus, social researchers have sought to understand dementia in relation to the person and their environment. Social gerontologist Tom Kitwood is frequently cited for his critical contribution to the discussion of personhood in dementia and person-centred dementia care. He proposes to put the person before the diagnosis and to set aside “hypercognitivism and extreme talkativity” for a greater focus on “emotion and feeling” (Kitwood 1997, 5). In his book, he outlines several theoretical models of

4

Introduction

personhood and ultimately settles on “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being” (Kitwood 1997, 8). He identifies the “main psychological needs of people with dementia,” as attachment, comfort, identity, occupation, inclusion, and central to all these, love. Kitwood has found that people living with dementia are affected not only by symptoms of dementia, but by the associated stigma: A person with dementia is involved in two kinds of change, going on side by side. First, there is the gradually advancing failure of mental powers […]. Second, there are changes in the social-psychological environment—in patterns of relationship and interaction […]. It is impossible, of course, to distinguish clearly between the two kinds of change—the one neurological and the other social-psychological. (1997, 20) This second kind of change (corroborated by Sabat (2001) and Bender and Cheston (1997)) demonstrates the importance of examining the social stigma undoubtedly attached to dementia. In a sense, dementia stigma can be positioned at a cross-section of ableism and ageism, though it does not exclusively affect older people. Anthea Innes (2009) acknowledges that ageing and dementia are inextricably linked in the Western6 cultural psyche, evidence of which is that the ageing population rarely goes without mention in public media about dementia. See Lock’s book, The Alzheimer Conundrum: Entanglements of Dementia and Ageing (2013), for an extensive examination of the various theories about dementia causation, specifically Alzheimer’s disease, of which ageing is a key consideration. The stigma dementia confers comes accompanied by its own rhetoric, much of it taking metaphorical form. This discourse goes back several decades; an early contributor to this idea, Robertson (1990) writes about “catastrophic projections” around Alzheimer’s disease and the idea of an “apocalyptic demography,” which emphasises the economic and social burden of older people. Dementia also joins a list of other “epidemics,” including obesity, cancer, autism, child abuse, and terrorism (Lock 2013; Peel 2014) and has been called more specifically the “silent epidemic” and the more abstract “millennium demon” (cited in Zeilig 2014a, 260; Peel 2014). Dementia is analogised as large-scale disasters like tsunamis (to describe the societal impact) and warfare (to describe the caregiver experience), and has been called “the death that leaves the body behind” and “the funeral that never ends” (cited in Downs, Small, and Froggatt 2006, 194). In line with descriptions of the condition, individuals with dementia have been characterised as zombies (Behuniak 2011)—an imagery emerging from the notion of the “empty shell” (cited in Guendouzi and Müller 2006) that is commonly associated with the condition. Pia Kontos notes that Alzheimer’s disease in particular “carries with it a sentence of social death” (2004, 829; after Sweeting and Gilhooly 1997). Zeilig recognises the use of metaphor as an attempt “to explain difficult concepts” (2015, 15), but, far from excusing the

Introduction

5

tendency, has also noted that “the metaphors persistently used to explain dementia shape our consciousness about the condition” (Zeilig 2014a, 258). Indeed, stories and reports of dementia are framed by “emotive language” (Innes 2009, 29) that evokes a social dread to accompany proclamations of increased prevalence. Social researchers Gail Mitchell, Sherry Dupuis, and Christine JonasSimpson provide a troubling list: “Persons with dementia are often described as empty shells, demented, vegetative, broken, dysfunctional, costly, high maintenance, and burdensome” (2011, 22). Gerontologists Jiska Cohen-Mansfield, Hava Golander, and Giyorah Arnheim employ similarly evocative language to describe dementia: “It destroys the brain and confuses the mind; it disintegrates the self and degrades one’s dignity and soul” (2000, 381). Dementia as a loss of self These descriptions are borne of understandings of dementia that assume an erosion or loss of self.7 The biomedical emphasis on cognition, the notion of brain death, and memory loss and its presumed interference with narrative identity all contribute to this belief. Many recognise the perceived ties between cognition and selfhood and, therefore, the association between dementia symptomology and selferosion or self-loss (Zeilig 2015; Kontos 2004; Downs, Small, and Froggatt 2006). The loss of memory has a particularly strong link to self-loss (Kontos 2004; Downs, Small, and Froggatt 2006; Zeilig 2014b). At the very least, dementia-related memory loss is believed to disconnect a person from their “former self” (Downs, Small, and Froggatt 2006), a demarcation I explore in this book. The loss of self is also informed by the idea that people with dementia cease to be interested in interactions with others (Beard et al. 2009). As dementia affects one’s linguistic skills, it may be assumed that they can no longer communicate at all. Because the communicative difficulties resulting from dementias do impair self-expression, people with dementia may struggle to dispel these assumptions about impaired cognition. The struggle to “communicate coherently” can escalate to an assumption that they “have stopped being a person” (Downs, Small, and Froggatt 2006, 194). Beyond the changes to social interaction, cognitive decline compromises the capacity for independent living, including financial and medical decisions, as well as personal maintenance (Smith 2009, 37). The resulting dependency on family and community limits one’s autonomy. Steven R. Sabat (2001) finds that, despite cognitive decline and deficiencies, selfhood endures, even though the person’s attributes may shift as a result of dementia. Some personal characteristics may be diminished, others unchanged, and new traits may come to light. He notes that some losses to the “socially and publicly” presented self are “indirect rather than direct results of the disease” (Sabat 2001, 275); that is, the stigma, changes to relationship dynamics, and blows to selfesteem can also be responsible for perceived changes to selfhood. Mike Bender and Richard Cheston agree that “individuals who have been labelled as in some way

6

Introduction

deviant are allocated a restricted range of social roles and […] their behaviour is interpreted in terms of those prescribed roles” (1997, 522). Essentially, selfhood and personal identity are not lost. Sabat proposes a model by which we can “appreciate still further the [person with dementia’s] vulnerability as well as [their] remaining abilities in the domain of selfhood” (2001, 275). He recognises that to “position the afflicted person, even innocently, as ‘the demented patient’ is to create a selffulfilling prophesy” (Sabat 2001, 308), by which the person with dementia is denied the opportunity to self-express, to connect socially, or to affirm their selfhood. To this point, in one study, people with dementia rated their own functional abilities with more accuracy than their family members and friends who tended to underestimate the person with dementia (Martyr and Clare 2018). More contemporary research has continued to compellingly contest the perceived erasure of self that results from dementia (Kontos 2004; Downs, Small, and Froggatt 2006; Millett 2011; Mahieu, Anckaert, and Gastmans 2014; Batra et al. 2016). Psychologist Marie Mills cites that “[t]heoretical arguments suggest that dementia sufferers have a rich and powerful emotional life” (1998, 25)—a case supported by their affective response to certain stimuli: they laugh, cry, express frustration and disappointment, engage playfully with others, and so on. […] From the affective responses we can infer that people with even late-stage dementia still react to, engage with, and co-create a life-world. (Millett 2011, 510) This notion of co-creating a life-world is significant. It complements a notion of different experiences of reality, which I explore in this book. Even if a person is not consistently confirming to a consensus of reality, this does not mean they are not experiencing reality. Despite this growing understanding of people with dementia and their retention of selfhood, a dominant discourse of the eroding self largely persists in both lay and biomedical understanding. Dementia narratives in theatre Dementia’s narrativisation across artforms tends to be reduced to the losses of memory, independence, social agency, and selfhood. These narrow depictions of people with dementia do appear to influence public opinion. Guendouzi and Müller observe this phenomenon: Much of the public’s knowledge about dementia comes via the media in the form of televised documentaries of people living with dementia (which often focus on the negative aspects of dementia because, as noted already, bad news is more newsworthy), health reports (often sound bites of research rather than proper summaries), and heath care brochures (often inadequate bullet points). (2006, 147)

Introduction

7

Zeilig addresses “an ever-increasing supply” of dementia representations “in film, TV, novels, plays, memoirs, newspaper stories, poetry and even opera” (2015, 14). Rebecca Bitenc’s book, Reconsidering Dementia Narratives: Empathy, Identity and Care (2020), examines both fictional and non-fiction narratives, including some first-person accounts. The contributions in Tess Maginess’s edited collection Dementia and Literature: Interdisciplinary Perspectives (2018) primarily consider dementia in fiction, including a chapter from Lucy Burke who writes about dementia stories from a crucial disability perspective. I examine the subject as it appears in live performance. The theatrical canon and dementia

As the cultural awareness of dementia is raised, theorists and practitioners, as well as those reading from a scientific—for instance, neurological—perspective, have begun to identify a dementia discourse in landmark plays. Several iconic characters have become part of the wave of dementia awareness. King Lear (ca. 1606) is arguably the most widely recognised historical instance of dementia onstage, despite ongoing debate among psychiatrists as to whether Lear has dementia or not.8 A neurologist’s reading of Miguel de Cervantes’s Don Quixote (1615) reveals a “probable” diagnosis of dementia with Lewy bodies (García-Ruiz and Gulliksen 1999). Quixote’s behaviour demonstrates mood lability, hallucinations, sleep disruption, and cognitive impairment (García-Ruiz and Gulliksen 1999). As for more modern works, Kevin Williamson (2012) notes that Willy Loman of Arthur Miller’s Death of a Salesman (1949) can be performed as though affected by dementia. An argument can also be made for Samuel Beckett’s dramatic works.9 I have been to see several of these shows in the theatre that were either implicitly or explicitly marketed around dementia themes. These plays have been the subject of extensive and varied “diagnosing.” These emerging themes represent a dementiathemed resurrection through revivals of canonical works that accentuate otherwise indirect dementia themes with an intent to tap into the cultural zeitgeist. While general senility with age may be found in historical performance works, along with a variety of conditions of madness, dementia—as we recognise it today—could not be explicitly referenced. Valerie Barnes Lipscomb identifies “theatre as a fertile ground for various theoretical angles in age studies” (2012, 117). Representations of age on the contemporary stage bear signs of a long history of “unflattering” (Switzky 2016, 135) and stereotyped “old” characters (Mangan 2013). Michael Mangan (2013) recognises that the stock characters of the 19th century—including a typical Old Man and Old Woman—were influenced by 16th-century Commedia dell’arte. Similar stereotypes persist even today. Elinor Fuchs (2014) identifies that the very plot structure upon which many classical and canonical works are founded embraces a peak-and-decline composition. This peak-and-decline is analogous to the progress/decline binary of the “master” narrative of age that Margaret Morganroth Gullette (2004)

8

Introduction

identifies. Gullette (2004) also argues that age(ing) is not only a biological process, but a cultural one. Narratives structured around decline appear to be accepted as standard in stories of dementia, particularly as medical and cultural narratives emphasise deterioration. Gibson’s writing on the “right kind” of dementia story (after Alison Jeffers’s (2012) “right kind” of refugee story) provides some useful critical discussion. The “right kind” of dementia story is characterised by accounts of loss, despair, failure, and tragedy. This story does not tell of the extant or emergent abilities of people affected by dementia, particularly those sixty-five years and older. Instead, it focuses on their pasts or on futures made grim for us all by the probability of a ‘silver tsunami’ […]. It may also tell of long-suffering carers coping with the demands of aggressive, forgetful, dependent, loved ones who are draining personal or familial emotional, physical, and financial resources. These dependent humans are framed as ‘burdens’ to the economy, to society, to us all. (Gibson 2020, 3) While I contribute my own analyses of dementia in theatre, Gibson’s theory is useful to keep in mind throughout this book. Indeed, several of the discussed performances do feature some elements that typify the “right kind” of dementia story. Contemporary performance

A number of English-language works have emerged from the UK, Australia, the US, and New Zealand. The strongest push for the greater public’s awareness of dementia, and funding for performances that stage it, can be seen in the UK, where dementia has been called a “national health priority” (Heward, PalfremanKay, and Innes 2015, 230). There, a focus on care and quality of life for people with dementia is reflected in policy at both the national and local levels (Heward, Palfreman-Kay, and Innes 2015). Works produced in the UK are often supported by, or developed with, inter/national organisations. For instance, to develop Autobiographer (2011), Melanie Wilson, in receipt of support from the Wellcome Trust,10 met recurrently with an expert in the field, Professor Sube Banerjee. The Wellcome Trust also supported The Lion’s Face (2010) and RUFF (2012). Similarly, the Arts Council in the UK is cited as a source of support for RUFF, Inside Out of Mind (2013), Grandma Remember Me? (2012), and State of Grace (2015). Platform 4’s initial funding to develop Memory Point(s) (2012) was from a national lottery, followed by the Arts Council. These cases represent the strong funding paradigm facilitating broader dementia awareness in the UK, which began to take shape in the first half of the decade. These works that receive financial support largely appear outside the mainstream sector and are more likely to be presented by independent companies that do not produce mimetic spoken dramas. That funding that has been directed

Introduction

9

here has the positive effect of directing support towards works that make use of a broader palette of theatrical tools. However, as Fuchs (2017a, 2017b) observed in the mid-2010s, dementia had begun to gain popularity on mainstages. She reflects that, previously, playwrights had perhaps shied away from dementia: Not so long ago characters didn’t lose their memories onstage, […] unless you think King Lear has Alzheimer’s, when have you seen an older figure with dementia on the professional New York stage? [Line break.] But now suddenly, in the 2015–16 season, I counted four cases of Alzheimer’s. (Fuchs 2017a) Fuchs (2017b) is less surprised by the incidence of dementia on the stage in general than she is by its appearance on Broadway in particular. Previously, dementia appeared in drama most frequently as a subplot, a stressor for the central protagonist or the family as a whole, or an additional quirk to an already dysfunctional family. As such, characters with dementia have primarily been positioned as an object of the drama; however, the condition has gained a cultural currency that has produced characters with dementia who are the central subject. The exploration of dementia’s representation in contemporary performance is largely uncharted territory. Previously, much of the research about dementia and drama has investigated the therapeutic applications of drama and storytelling. For systematic reviews of arts-based therapies used with people with dementia, see Renée Beard (2011), Kate de Medeiros and Anne Basting (2014), Andrew Fraser, Hilary Bungay, and Carol Munn-Giddings (2014), Vicky Karkou and Bonnie Meekums (2017), Jessica McGreevy (2016), and Hannah Zeilig, John Killick, and Chris Fox (2014). Such research continues. Situated in the larger field of arts-based interventions (music, dance, visual art), drama therapies make use of storytelling to achieve outcomes related to self-expression, although creativity and original storytelling is only sometimes a goal. Applied drama with creative goals is discussed in Chapter 2, and theatre-making by people with dementia outside a therapeutic setting is discussed in Chapter 8. In this book, I consider original performances produced after 2010, though a number of earlier works are listed in the Bibliography of Works, and as noted, the period of the mid 2000s and onwards shows an exponential rise in the number of dementia-themed works presented. This book investigates what representative possibilities emerged once the subject had made its way into different performance styles. The focus on works that deviate in some way from dramatic tradition is intended to uncover potential possibilities for re/presenting dementia that exist outside of stereotyped constructions. That is not to say that stereotypes do not exist in the selected works; in reality, the analyses reveal the ease with which dementia narratives can fall in step with typical and even problematic representations, à la the “right kind” of dementia story.

10 Introduction Useful terminology The works under discussion make use of a broad theatrical vocabulary, including puppetry, mask, mime, dance, physical theatre, and immersive techniques. These live performances demonstrate possibilities for representing people living with dementia beyond mimetic depictions of memory loss, linguistic decline, and apparent confusion. Live performance can be narrative-driven, image-driven, music/dance-driven, or a mix of these and others. Those who study theatre will know of its capacity for effective and affective storytelling. For those less acquainted, there are some terms I need to define before delving into the case studies. The Glossary at the back of this book includes the following descriptions and others. Mimesis has roots in the Greek for “imitation.” In narrative, especially screen and stage media, it refers to a realism that seeks to emulate life as realistically as possible. A mimetic drama scripts dialogue that feels like real-life conversation and develops characters whose action and development feel believable. It is important to recognise how theatre is distinguished from other media and, by extension, why it is worth looking at deviations from mimetic representation. Some may be familiar with the term diegesis from film studies. It refers to the storyworld. It is very useful when discussing theatre, as not everything you see onstage is necessarily part of the storyworld: think puppeteers dressed in all black, stagehands moving set pieces, directors prefacing a performance. One may describe the music in a film as being extradiegetical; the music accompanies the scene but may not be heard by the characters in that scene. The term essentially has the same application in theatre. I sometimes refer to theatre’s ontology, its way of being, usually in reference to the fact that it is (typically) live. Theatre is distinct in its liveness; its potential to incorporate the body, the voice, performing objects, and visual dramaturgy; and the “dialogical creation and exchange of meanings” (Bernard et al. 2015, 1141) in shared time and space. Theatre can be layered and textured in a way that is more immediately perceptible to an audience; and, as I discuss in this book, it may layer alternate experiences of reality. Moreover, theatre affords possibilities for participation and proximity. Live theatre necessitates bodily co-presence. Bodily co-presence is the shared time and space between performers and spectators, but also among an audience and, of course, among those onstage. In Chapter 5, I also borrow the phrase copresence from Paul Piris (2014) to describe a phenomenon where puppets perform alongside human actors (characters with different ontologies and meanings attached), as opposed to puppetry where the humans onstage do not play a role in the diegesis (puppeteers dressed in all black). Another key element of theatre’s ontology is its hypermediality. Chiel Kattenbelt (2006) calls live theatre a hypermedium to describe its capacity to feature multiple media in the performance space (projected images or video, live

Introduction 11 actors, puppets, live music, pre-recorded music, etc.) and allow each medium to retain its ontology. For comparison, if you were to film a dance piece that was accompanied by a live cellist playing over a pre-recorded track and a projected image in the background, the resulting video would turn everything to recorded video and sound. That is, the distinct textures of the live music over the prerecorded music, punctuated by the sound of the dancer’s feet on the floor, and the view of the live dancer in contrast to a digital projection are amalgamated, and some elements are lost. To view this same performance in its live form, an audience would experience those textures uncorrupted and the dancer and cellist embodied, aware of where one sound ends and the other begins, with all the edges and individual textures distinct. Dramaturgy has several meanings that apply in different contexts. As it appears in this book, dramaturgy describes a performance’s use and arrangement of spoken word, visual elements, spatial relationships, and sound, plus the structure of the narrative. Eamonn Jordan observes that “[d]ramaturgy is thus concerned with how meanings are embedded in texts” (2010, 19). For this reason, the analysis of dramaturgy is pertinent to uncovering layers of meaning in a performance. Live theatre that makes use of various performance forms and tools and ultimately avoids mimesis in its representation of dementia narratives may have the capacity to reimagine the direct experience of dementia and aid in prompting our collective rethinking of those living with dementia. A number of performance practitioners working with dementia in an applied capacity have used their practice to do just that, including Jayne Lloyd (2019), a dance artist who reimagines the “wandering” of residents with dementia, and Anne Basting, whose work is a staple of dementia–drama scholarship. Contemporary performance further distinguishes itself from other mediums in its potential as a site for collaborative development and community-based work. Style note: Throughout the book, play titles appear in italics, but social or applied theatre programs are not italicised. Where I quote from a script, stage directions or directions for visual or sound design are italicised. Playwrights may also use italics for emphasis in dialogue, so stage directions to performers appear in italics and within parentheses. The performances and discussions in this book In this book, I discuss the previously undocumented array of live performances about dementia from the early 2010s. I document narrative and dramaturgical motifs (and alternatives) in a selection of 11 performance works. Along the way, I indicate where the performances have resonance with broader narratives of dementia—the biomedical, political, and cultural—including how they deviate or challenge prevailing discourses. The performances prioritised in this book are those that centre on the character with dementia and in some way disrupt realism or dramatic convention.

12 Introduction These works offer an alternative to merely staging the outward, clinical signs of dementia that risk portraying the person in some way cut off from the world. Several clinical markers of dementia—which can include linguistic difficulty and mutism, memory loss, mood lability, day-night reversal, and the perceived loss of self—can give the impression that they are cut off from reality. The world surrounding characters with dementia is significant. Their relation to this world can demarcate, but also transform or reframe, their condition. Significant aspects of the diegesis are as follows: the work’s setting (or its apparent placelessness), its structure, its dialogue, and its use of objects, music, projection, and any number of live performance tools. Both the narrative structure and the dramaturgical forms are crucial to interrupting the consensus of reality or presenting alternate experiences of reality as coexisting in the diegesis. As such, it is crucial to investigate dramaturgies of puppetry, shadow theatre, dance and physical theatre, projection, and sound technologies, as well as dramaturgies that de-hierarchise coherent spoken language as key signifier or disrupt chronological linearity. The selection criteria for the main 11 performances are as follows: (1) the work was first staged between 2010 and 2013; (2) dementia is central to the performance, not a subplot; (3) the performances collectively demonstrate the different ways in which live theatre performance may narrativise dementia. As a method, case studies are based on a number of “data points.” My analyses are, therefore, based on a variety of sources, depending on their availability, including scripts, live performances, performance recordings, video clips and images, descriptions from creators, reviews by theatre critics, or discussions by scholars. Each chapter contains a note outlining the sources on which I base my discussion. There are, of course, limitations to my selection of performances. They are mostly English-language works (bar one) and mostly from the UK, Australia, and the US. This naturally leaves a gap in the knowledge about representations of dementia onstage outside these cultural contexts. Other lacunae in this book include intersectional perspectives. While gender arises periodically, these performances—it must be said—are overwhelmingly white, mainly cis- and hetero-“normative” (though a couple of exceptions to the latter feature), and lack significant discussions of class, wealth, racial, or educational inequality, nor do they raise significant discussion about how existing disability intersects with a diagnosis of dementia. Bitenc highlights a similar concern about the collection of texts in her book: “while their authors differ in gender and nationality, these texts cannot be seen as representative for the entire population with dementia—across age, ethnicity, race, class, sexuality, debility, or geographical location” (2020, 30). She adds that the memoirs discussed in her book were all written by people “diagnosed with younger-onset dementia [who] come from largely white, educated, middle class backgrounds and share a heteronormative sexual orientation” (2020, 30). I pick up this omission briefly in Chapter 3. Some readers may also be aware of the growing practice of theatre performance led by people with dementia (Gibson 2020). I consider this development in the field in Chapter 8, although, in the early 2010s,

Introduction 13 dementia representation was still beginning to evolve in terms of narrative, let alone in terms of creative development. The following chapters analyse 11 performances in depth and provide brief notes on several others to give a sense of the trends in representation during the period in question (and beyond). A brief conclusion to Parts 1, 2, and 3 each coalesces the main points of discussion. Part 1, “We’re All in Our Own Little World,” comprises three chapters. This title refers to both interior experiences of dementia and the (socio-cultural, clinical, familial) layers of dementia experiences. Chapter 1 examines Le Père/The Father (Florian Zeller, France/England) and Autobiographer (Melanie Wilson, England). Though vastly different, both plays seek to position the audience to share in the lead character’s experience of reality, that is, to present an interior experience of dementia. I show how this endeavour is undertaken in two distinct dramaturgies. Chapter 2 begins by highlighting key examples of research-based theatre about dementia, as well as potential points of contention in these practices. The main discussion focuses on Inside Out of Mind (Tanya Myers, England), which both affords witness to the world of professional carers working in a dementia ward and uses a rich palette of performance tools to give credence to the individual experiences of reality of the characters with dementia. Chapter 3 considers performances that take a societal perspective or critique the social/political/medical structures that must be navigated by people with dementia and their families. Really Old, Like Forty Five (Tamsin Oglesby, England) is the basis of the central discussion. It demonstrates the convergence of political, clinical, and, ultimately, familial dementia narratives. Part 2, “Active and Passive Embodiment,” contains two chapters that both analyse two works that represent a shift away from the spoken word and towards a predominantly physical dramaturgy. Chapter 4 examines Sundowner (KAGE, Australia) and 1 Beach Road (RedCape Theatre, England), which use dance theatre and physical theatre, respectively, as part of expressing their dementia narratives. Both take place in the family home and explore how dementia catalyses shifts in relationships to place and objects. Chapter 5 reflects on the particularity of puppetry as a performance form, especially when used to narrativise dementia/disability. I compare D-Generation: An Exaltation of Larks (Sandglass Theater, US) and It’s Dark Outside (The Last Great Hunt, Australia) for how they deploy puppetry with different representative implications. Part 3, “Postdramatic Theatre: Radical Alternatives for Staging Dementia,” is concerned with performances that demonstrate a departure from the emerging compositional and representational trends and a sharper contrast to mimetic dramatic work. Chapter 6 discusses Memory Point(s) (Platform 4, England), which represents dementia abstractly in an interactive, multisensory, intimate audience experience. Chapter 7 explores the religious imagery in Sul Concetto di Volto nel Figlio di Dio (Socìetas Raffaello Sanzio, Italy) as a device to accentuate the existential anxiety around dementia and how it challenges our sense of humanity. I precede the analysis with some discussion around how dementia/disability is

14 Introduction figured in some religious discourse, both historical and contemporary. The book’s final discussion (Chapter 8) considers RUFF (Split Britches, US), created and performed by Peggy Shaw following her stroke. The chapter considers the performance itself, as well as the discourse around Shaw’s changed performance style after her stroke. It is apt to end on a discussion of work led by people with dementia and an indication of where some of the most exciting work about dementia is emerging: from people with lived experience of the condition. Finally, a short Conclusion summarises my arguments about the usefulness of the live theatre medium for telling diverse stories about dementia and outlines the directions of emerging and future research. Notes 1 Throughout this book, I use “care partner” in lieu of “carer” to refer to spouses, children, other family members, and friends who provide informal, at-home support to someone with dementia. This choice is informed by Kate Swaffer (among others) who find “carer” can undermine the existing relationship between the person with dementia and the care partner. I use the word “carer” where I refer to professional nurses or health care assistants because care is their role in relation to the person with dementia. 2 The title of Zeilig’s article, “Dementia as a Cultural Metaphor,” has notable echoes of Susan Sontag’s book titled Illness as Metaphor ( 1977). 3 Other lesser-known types of dementia include: chronic traumatic encephalopathy (formerly known as dementia pugilistica and colloquially as “punch drunk syndrome” and known among laypeople primarily for its association with American football), chemotherapy-induced or cancer-related dementia, and AIDS-related dementia. 4 Renée Beard (2016) outlines shifts in the biomedicalisation of dementia in the last several decades. She also explains that dementia prevalence and rates of diagnosis are often emphasised by those who wish to attract funding for medical research. Martha Holstein (1996, 1997) outlines an earlier history of Alzheimer’s disease and senile dementia. 5 There are useful parallels to draw between disability and dementia activism, but also some barriers ( Gibson 2020, 13; Shakespeare, Zeilig, and Mittler 2019; Basting 2009). 6 I acknowledge that delineations between Western and Eastern culture are often made arbitrarily. However, the need to scope the discussions in this book and not to stray too far from my own frame of reference necessitates this blunt framing. For the sake of comparison, it is acknowledged that the culture of “groupism” is ingrained in East Asian nations, which include Korea, China, Japan, Singapore, Thailand, Taiwan, and Hong Kong ( McCann et al. 2004). This is demonstrated by the predominant model of family structures and relationships that attributes great value to one’s elders. Studies from the last 20 years in the region have been concerned with the incidence of elder abuse, as the globally ageing population complicates the tradition of family-based aged care ( McCann et al. 2004; Erlingsson et al. 2012; Kawakami and Son 2015; Shea and Zhang 2016). However, contemporary researchers are finding evidence to suggest that globalisation is influencing these group-orientated cultures and, as a result, alternatives to family-based care are gaining popularity in these nations and in East Asian communities internationally ( McCann et al. 2004; Kawakami and Son 2015). 7 Donna Cohen and Carl Eisdorfer’s book The Loss of Self ( 1986) is subtitled A family resource for the care of Alzheimer’s disease and related disorders. It represents a key trope in dementia representation that the person with the condition loses their self as it progresses. It is perhaps unsurprising that the book is intended for families of people

Introduction 15 with dementia and not a guide for the person with dementia themselves. This title and similar phrases are brought up here and there in the social and cultural studies literature as examples of poor discourse around dementia. Sabat and Harré (1992) even in the early 1990s expressed “puzzlement” over the title. 8 Alexander Truskinovsky is a useful source in this manner; his 2002 article is a concise literature review on the various diagnoses of Lear throughout the 19th and 20th centuries. When Lear announces that he will divide his kingdom into three parts, he notes his reasoning: “To shake all cares and business from our age/Conferring them on younger strengths while we/Unburdened crawl toward death” (Shakespeare c 1606, 1:1:37–39). The text contains several instances where age is associated with wisdom, yet this is arguably a device for comparison to position Lear’s behaviour as beyond “normal” ageing. Conversely, early in the play, Regan observes “’Tis the infirmity of his age” (1:1:293), and Goneril describes the “waywardness that infirm and choleric years bring with them” (1:1:295–299), thus his daughters attribute his behaviour to his age. 9 While Beckett’s plays do not directly reference dementia, Hugh Culik (1989) identifies references and allusions to Parkinson’s disease therein. Beckett’s plays also more generally evoke images of the human being as moribund and, significantly, many of his onstage subjects are aged. In Endgame (1957), Beckett ascribes failing sight to Nell and Nag, Hamm’s parents who live in ash bins. An aged Krapp in Krapp’s Last Tape (1958) records his memories to tape and shows signs of memory loss in reaction to their playback. Lastly, the woman onstage in Rockaby (1980) exhibits incapacitation, akathisia (rocking), aphasia, and circumlocution, and speaks of an ending. 10 The Wellcome Trust is a pharmaceuticals company based in London whose philanthropic arm works to further the scientific and medical understanding of the wider public.

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18 Introduction McCann, Robert M., Aaron C. Cargile, Howard Giles, and Cuong T. Bui. 2004. “Communication ambivalence toward elders: Data from North Vietnam, South Vietnam, and the U.S.A.” Journal of Cross-Cultural Gerontology 19: 275–297. McColgan, Gillian. 2004. “Images, constructs, theory and method: Including the narrative of dementia.” In Dementia and social inclusion: Marginalised groups and marginalised areas of dementia research, care and practice, edited by Anthea Innes, Carole Archibald, and Charlie Murphy, 169–183. Jessica Kingsley Publishers. McGreevy, Jessica. 2016. “Arts-based and creative approaches to dementia care.” Nursing Older People 28 (1): 20–23. doi: 10.7748/nop.28.1.20.s20 Millett, Stephan. 2011. “Self and embodiment: A bio-phenomenological approach to dementia.” Dementia 10 (4): 509–522. doi: 10.1177/1471301211409374 Mills, Marie A. 1998. Narrative identity and dementia: A study of autobiographical memories and emotions. Ashgate. Mitchell, Gail J., Sherry Dupuis, and Christine Jonas-Simpson. 2011. “Countering stigma with understanding: The role of theatre in social change and transformation.” Canadian Theatre Review (146): 22–27. doi: 10.1353/ctr.2011.0029 Peel, Elizabeth. 2014. “‘The living death of Alzheimer’s’ versus ‘Take a walk to keep dementia at bay’: Representations of dementia in print media and carer discourse.” Sociology of Health & Illness 36 (6): 885–901. doi: 10.1111/1467-9566.12122 Piris, Paul. 2014. “The co-presence and ontological ambiguity of the puppet.” In The Routledge companion to puppetry and material performance, edited by Dassia N. Posner, Claudia Orenstein, and John Bell, 30–42. Taylor and Francis. Robertson, Ann. 1990. “The politics of Alzheimer’s disease: A case study in apocalyptic demography.” International Journal of Health Services 20 (3): 429–442. doi: 10.2190/ C8AE-NYC1-2R98-MHP1 Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Sabat, Steven R. and Rom Harré. 1992. “The construction and deconstruction of self in Alzheimer’s disease.” Ageing & Society 12 (4): 443–461. doi: 10.1017/S0144686X00005262 Shakespeare, Tom, Hannah Zeilig, and Peter Mittler. 2019. “Rights in mind: Thinking differently about dementia and disability.” Dementia 18 (3): 1075–1088. Shakespeare, William. c1606. King Lear. Shea, Jeanne L. and Yan Zhang. 2016. “Ethnography of eldercare by elders in Shanghai, China.” Ageing International 41: 366–393. doi: 10.1007/s12126-016-9262-6 Smith, Andre. 2009. “Decision-making as social practice: Exploring the relevance of Bourdieu’s concepts of habitus and symbolic capital.” In Decision-making, personhood and dementia: Exploring the interface, edited by Deborah O’Connor and Barbara Purves, 37–46. Jessica Kingsley Publishers. Sontag, Susan. 1977. Illness as metaphor. Farrar, Straus & Giroux. Sterin, Gloria J. 2002. “Essay on a word: A lived experience of Alzheimer’s disease.” Dementia 1 (1): 7–10. doi: 10.1177/147130120200100103 Sweeting, Helen and Mary Gilhooly. 1997. “Dementia and the phenomenon of social death.” Sociology of Health & Illness 19 (1): 93–117. doi: 10.1111/1467-9566.ep10934317 Swinnen, Aagje and Mark Schweda. 2015. “Popularizing dementia: Public expressions and representations of forgetfulness.” In Popularizing dementia: Public expressions and representations of forgetfulness, edited by Aagje Swinnen and Mark Schweda, 9–20. Transcript.

Introduction 19 Switzky, Lawrence. 2016. “Introduction: Modern drama, aging, and the life course.” Modern Drama 59 (2): 135–142. Truskinovsky, Alexander M. 2002. “Literary psychiatric observation and diagnosis through the ages: King Lear revisited.” Southern Medical Journal 95 (3): 343–352. Williamson, Kevin D. 2012. “Resurrection of a salesman.” The New Criterion 30 (10): 37–41. Zeilig, Hannah. 2014a. “Dementia as a cultural metaphor.” The Gerontologist 54 (2): 258–267. doi: 10.1093/geront/gns203 Zeilig, Hannah. 2014b. “Gaps and spaces: Representations of dementia in contemporary British poetry.” Dementia 13(2): 160–175. doi: 10.1177/1471301212456276 Zeilig, Hannah. 2015. “What do we mean when we talk about dementia? Exploring cultural representations of “dementia”.” Working with Older People 19(1): 12–20. doi: 10.1108/WWOP-10-2014-0032 Zeilig, Hannah, John Killick, and Chris Fox. 2014. “The participative arts for people living with a dementia: A critical review.” International Journal of Ageing and Later Life 9 (1): 7–34. doi: 10.3384/ijal.1652-8670.14238

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) Autobiographer (2011) by Melanie Wilson (England) Death of a Salesman (1949) by Arthur Miller (US) D-Generation: An Exaltation of Larks (2013) by Sandglass Theater (US) Don Quixote (1615) after Miguel de Cervantes (Spain) Endgame (1957) by Samuel Beckett (Rep. of Ireland) Grandma Remember Me? (2012) by Belinda Lazenby (England) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia) King Lear (ca. 1606) by William Shakespeare (England) Krapp’s Last Tape (1958) by Samuel Beckett (Rep. of Ireland) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) Memory Point(s) (2012) by Platform 4 (England) Really Old, Like Forty Five (2010) by Tamsin Oglesby (England) Rockaby (1980) by Samuel Beckett (Rep. of Ireland) RUFF (2012) by Peggy Shaw and Lois Weaver (Split Britches) (US) State of Grace (2015) by Reckless Kettle (England) Sul Concetto di Volto nel Figlio di Dio (2010) by Socìetas Raffaello Sanzio (Italy) Sundowner (2011) by KAGE (Australia) The Lion’s Face (2010) by Mahogany Opera Group (England)

Part 1

“We’re All in Our Own Little World” Inside Dementia Experiences

“We’re all in our own little world” is a line in Tamsin Oglesby’s Really Old, Like Forty Five, which features in Chapter 3.

1

Dementia from the Inside The Father and Autobiographer

People with dementia are not present in the way our consensus of reality expects them to be, but they are there in their own way. Because [they] live in an altered state of consciousness, their behaviours are typically non-linear, and their actions are nondirected; they often inhabit dreamland and move fluidly through it. (Shabahangi quoted in Nicholson 2011, 59)

This chapter and Part 1 more generally take Nader Robert Shabahangi’s quote above (Nicholson 2011, 59) as a point of departure. I embrace the notion of a “consensus of reality” as an alternative to a single reality, as it acknowledges that reality can be an individual experience. Failing to recognise the expectations of the consensus of reality—and the individual experiences—can exclude people with advanced dementia presenting “altered state[s] of consciousness” and “nonlinear behaviours.” When people wit h dementia appear to be removed from present time and place, it can be assumed that they lack personhood (in lacking present-ness). Steven R. Sabat would agree that their “needs, reasons, hopes and the like can form the bases upon which they act intentionally in attempting to navigate the terrain of a social world that is partially veiled for them due to the effects of the disease” (2001, 222). He contends that “[t]o refer to someone as being ‘divorced from reality’ is itself an act that has far-reaching consequences in terms of how one then treats that person” (Sabat 2001, 316). Just as advances in dementia care have been driven by the principles of personcentred care (Kitwood 1997), characters with dementia should be central to dementia narratives, not simply a supporting character who is oftentimes merely a family burden. Indeed, some stories are primarily about care partners and these are experiences worthy of sharing. Yet, the common metaphors that emerge in these narratives position the person with dementia as burdensome, incapable of doing anything for themselves, even thinking for themselves. In the case of autobiog­ raphies, Rebecca Bitenc (2020, 128) has found in her work that most memoirs are written by family care partners. For example, see Gillian McColgan’s (2004) dis­ cussion of Lisa Appignanesi’s Losing the Dead: A Family Memoir (1999) and Linda DOI: 10.4324/9781003282037-3

24 “We’re All in Our Own Little World” Grant’s Remind Me Who I Am, Again (1998).1 In this category, the stories are personal and present an authentic account of the familial experience of dementia, yet they still cannot fully convey the direct dementia experience and may even prioritise so-called “inadmissible stories” (Hall and Sikes 2017). I do not attempt to counter these “inadmissible stories” in this book, though I would argue that these perspectives have been aired and heard and platformed, and that there is a greater need for what Gibson (2020) calls “not the ‘right kind’ of dementia stories.” That is to say, there is now a need to foreground stories that are not just about dementia, the condition, but about people living with dementia and their retained, if trans­ formed, selfhood. To give a sense of what the prevailing narratives of familial experiences lack, Lucy Burke unflinchingly summarises Michael Ignatieff’s Scar Tissue (1993) as largely a deeply self-indulgent text in its obsessive and prolonged exploration of the narrator’s cri de coeur in the face of his mother’s dementia. It is striking that his mother’s personhood is persistently effaced by the narrator’s focus upon his own crisis of identity; she effectively functions as a cipher or screen upon which he projects his own existential crisis. (Burke 2014, 45) Renée Beard draws attention to our “cultural reticence” and “unwillingness to join people with dementia where they are” (Beard 2016, 225, author’s emphasis). However, autobiographies and other life writing by people with dementia2 are becoming more common (Bitenc 2020). McColgan emphasises that these novels are authored “in the early stages of having dementia” (McColgan 2004, 170), which suggests a collective limitation across the extant autobiographical literature about dementia. Significantly, McColgan recognises that Oddly, these personal accounts, like the fictional ones, also characterise people with dementia and use stereotypical images.3 Thus fictionally ‘Grandma’ is seen as vulnerable and unable to cope (Forster 1990 [Have the Men Had Enough?]); a mother is reduced by her neurologist to a ‘case study’ and subject to loss and decline (Ignatieff 1993 [Scar Tissue]); and titles of personal accounts suggest journeys into dementia, being engulfed and lost, and longing to go home (Davis 1984; McGowin 1993; Rose 1996). These images only serve to illustrate how persuasive such representations are. (McColgan 2004, 170) These stereotypes echo the limited social roles prescribed to people with dementia that Bender and Cheston (1997)(1997) identify. Contrastingly, Kate Swaffer—a well-known Australian activist living with dementia—challenges these themes in her book, What the Hell Happened to My Brain? Living Beyond Dementia (2016), and in her other publications and her activism more broadly. Swaffer also co-founded Dementia Alliance International (DAI) in 2014 (a rare dementia organisation that is led by people with the condition), and in 2012 produced a

Dementia from the Inside 25 one-woman show, My Unseen Disappearing World, for the Adelaide Fringe Festival. Activism led by people with dementia dates back to the early 2000s (Knauss and Moyer 2006; Sterin 2002), including the founding of the Dementia Advocacy and Support Network International (DASNI) in 2001 by people with dementia, for people with dementia. Jenny Knauss and Don Moyer urge researchers to use participants with dementia in their studies “because they live with the beast full time, [and] have wisdom outsiders can’t duplicate” (2006, 71). Paula Usita, Ira Hyman, and Keith Herman (1998) conducted research comparing personal storytelling by participants with and without dementia. Those with dementia told their life stories with less linearity, more repetition, and some important events omitted. Crucially, the authors note: One of the most striking findings from the present research is that individuals with varying levels of dementia were able to participate in the assignment. Although many deficits were evidenced in their narrative abilities, persons with [Alzheimer’s] were often able to produce comprehendible, sometimes richly textured life stories. (Usita, Hyman, and Herman 1998, 195) If readers, listeners, and audiences can accept non-linear narratives, people with dementia are likely willing to share them. I discuss theatre led by people with dementia in Chapter 8. Bender and Cheston acknowledged in the 1990s that “concepts of dementia often act to exclude the internal world of the” person with dementia (1997, 513). In narratives where the experience of the person with dementia is central, more nuances may come about around the burdens of having dementia, the frustrations of having dementia, and perhaps most impor­ tantly, some of the moments of contentment and joy to be had in dementia. If anything is to be taken from the literature shared here and in the introduction to the book, it is that people with dementia deserve more nuanced and more agentic representation in media and popular culture. The Father and Autobiographer While neither of the two plays discussed in this chapter are written by people with dementia, they both endeavour to present an interior view of the condi­ tion’s mid to late stages. In the absence of firsthand accounts of late-stage dementia, examples like these see live performance become a site of exploration, grappling with what it might be like to have dementia. Florian Zeller’s Le Père/ The Father (2012) and Melanie Wilson’s Autobiographer (2011) each take their own approach to the direct experience of dementia. Le Père/The Father (here­ after, The Father) takes the audience on a journey through the unknowns and false knowns, the faces we think are familiar and the ones we are told should be. The Father—as one might recognise from extensive reviews—showed on London’s West End and New York’s mainstages, and is a more traditional drama,

26 “We’re All in Our Own Little World” in terms of scripted dialogue and acting style. Autobiographer is a gentler journey through threads of thought, memories, stories, and musings. Compared to The Father, it was a smaller production. Five actors each play Flora at a different age and four of the five share the stage from start to finish. They move among the audience who are sometimes called upon to answer questions and who sit sur­ rounding the performance space. I have chosen the two to appear together in this chapter, not for a crude “compare and contrast,” but to point to how they both stage an interior experience of dementia, despite dramaturgies that are distinct from each other. It is apt that this book should first turn its attention to Zeller’s The Father (English translation by Christopher Hampton).4 The Father is arguably the most extensively reviewed play about dementia in English-speaking theatre. In fact, it is frequently used a point of reference in the discussion of dementia performances, to the extent that it is cited in reviews of other plays about dementia, positioning it as a kind of exemplar. The critical success of both Francophone and Anglophone versions of The Father hasshown that dementia can take centre stage and attract audiences. The Father is about a man with dementia, André, and his relationship with his daughter, Anne, and her partner. The relatively simple premise is complicated by apparent jumps in time, unfamiliar characters that introduce themselves as familiar ones, and a set that slowly becomes more sparse and less identifiable. The play walks a line between traditional drama and a disrupted structure to illustrate the condition. So, while the work is decidedly of a conventionally dramatic style, the incomprehension of the world in a mind with dementia is explored through a fractured narrative and contradictory action.5 Time Dementia complicates temporality, primarily through the blurring of time resulting from memory loss, the dementia symptom most recognisable to lay­ people, though it is more complicated than any lay media makes out. In Alzheimer’s disease—the most common of the dementias—memory difficulties begin with anterograde amnesia, which compromises the “ability to remember new information” (de Rover et al. 2008, 608) to “form new memories” (Osimani and Freedman 1991, 24). The next stage of memory loss is retrograde amnesia. Retrograde memory loss affects memories that were already “recorded” before the dementia had become apparent, and retrograde amnesia works backwards (Osimani and Freedman 1991). Consequently, dementia can result in difficulty to grasp place and chronological time, and time can become blurred across bygone years and the present. Writing about Alzheimer’s disease in cinema, Raquel Medina identifies that “dementia’s temporality is fluid. Its fluidity is not based on chronological tem­ porality, or on a perpetual present, but on the principles of new and constantly regenerating temporalities which are defined by interpersonal relationships”

Dementia from the Inside 27 (2018, 32). Theatre in its liveness and immediacy is perhaps the ideal site to explore “constantly regenerating temporalities” (especially where characters es­ tablish relationships with an audience). Moreover, when the consensus of present reality is interrupted or alternate experiences of reality are presented as coexisting in the dramaturgy, linearity may be disrupted. I therefore see importance in rethinking linearity and other expectations of narrative structure. Plays about dementia that disrupt chronology or disregard linearity include the following. In Daisy (2011), the character with dementia is represented as both her ageing and child self; Plaques and Tangles (2015) presents its central character at different ages in a non-linear way; André y Dorine (2010) features flashbacks to the couple’s youth and the beginning of their relationship alongside the changes to their relationship in present day; Absence (2011) becomes fractured and expressionistic as the language of the central character becomes increasingly impaired; The Other Place (2011) gradually reveals the protagonist’s dementia as it jumps back and forth between scenes; Angeleta and Etelvina (2014) contains a journey through memories and hallucinations; in The Nature of Forgetting (2017), memory frag­ ments appear to reinvigorate the central character; Sundowner (2011) stages embodied memories intruding on or overlapping with the present; ‘A’: The Christmas Party (2008) constructs its language from lyrics and rhymes, disrupting the coherence of spoken word; and Also a Mirror (2011) is structured around vignettes. The Father problematises time, while in Autobiographer, time is practi­ cally irrelevant. The Father establishes both anterograde and retrograde amnesia very early both in the dialogue and through the jumps in time, changes in cast, and the steady emptying of the set of identifying set pieces. The Father begins abruptly, dropping the audience (and André) into the midst of a scene. It begins with a question from Anne: “So? What happened?” (Zeller 2015, 5). It becomes clear that—like us—André does not know what is supposed to have happened. The audience shares André’s unknowing or confusion for most of the play. Early in the play, Anne tells her father that she’s planning to move to London, where her new boyfriend lives. This man is not given a name at this stage, though Anne’s expartner, Antoine, is brought up. Only in the very next scene, a man introduces himself as Pierre, Anne’s husband; there is apparently no Englishman waiting in London. Later in the same scene, the Man has left, and a new Woman has “returned,” insisting that she is Anne. Amid André trying to grasp reality, the Woman asks, “What husband?” (Zeller 2015, 17). She tells André that she di­ vorced more than five years ago, plus she claims that she has never spoken about going to London. The move to London is denied for most of the rest of the play until, finally, at the play’s denouement, Anne says “If you remember, I’m going to go and live in London” (Zeller 2015, 57). It is important to outline these changes as they give a sense of the general confusion and difficulty to ascertain the consensus of reality. Time jumps back and forth—both between days and within days—up until the play’s final scene. There are also scenes that repeat.

28 “We’re All in Our Own Little World” Some scenes repeat short sections of dialogue from previous ones, but the context may have shifted slightly, so the scene reads differently. Most theatre audiences would be familiar with non-linearity as a structural choice where a playwright may tell the story out of chronological order (Arthur Miller’s Death of a Salesman (1949), Peter Shaffer’s Amadeus (1979), Tom Stoppard’s Arcadia (1993)), backwards (Harold Pinter’s Betrayal (1978), Jason Robert Brown’s The Last Five Years (2002)), or repeat scenes (Nick Payne’s Constellations (2012)). In The Father, the non-linearity is far more disorientating, because, like the audience, André’s experience of the play is linear, though the scenes around him are not. Lyn Gardner (2014) describes how the play “con­ stantly confounds expectations and works almost like a thriller, with a sinister Pinteresque edge, as complete strangers keep on turning up in André’s flat.” This element differentiates Zeller’s play from others about dementia on the mainstage: while it is clear André has dementia, the audience shares this experience of confusion and discontentment. What the audience knows only diverges from what André knows in the final scene, when he asks the nurse, “Who exactly am I?” (Zeller 2015, 61). After the audience has been in step with him for most of the play, it is a moment more in keeping with popular dementia representation that hinges on the assumed loss of self and leans on the tragic aspects of the condition, or what Janet Gibson (2020) calls the “right kind” of dementia story. On more than one occasion, André asks for the time and is ignored. This keeps both him and the audience in the dark and disoriented. As I’ve written elsewhere, André is persistently preoccupied with his watch. He misplaces and recovers it twice in the play’s early scenes (at times believing it to have been stolen). Yet, as the play goes on, the watch is lost and does not reappear, although it is referenced often. In this case, the watch both represents itself as a functional object and points to its owner’s memory loss. Moreover, Zeller’s choice to employ a watch in this way is especially apt for the play’s nonlinear and disorientating plot. The loss of the watch is, thus, not only a signal of general cognitive loss, but more specifically representative of the loss of time. (Batch 2020, 68) That is to say, the lost watch is an apt index for the jumps in time. As André tells a day carer: “I have two watches. I’ve always had two. One on my wrist and the other in my head. It’s always been that way” (Zeller 2015, 21). After mis­ placing his watch, André is unable to orient himself and must rely on others for this information. In one of very few instances where André is told the time, Anne invites André to sit down for dinner. ANDRÉ: ANNE: ANDRÉ:

But what time is it? It’s eight o’clock. Time to eat. Eight o’clock in the evening?

Dementia from the Inside 29 ANNE: ANDRÉ:

Yes, Dad. But I thought it was morning. I’ve only just got up. Look, I’m still in my pyjamas. (Zeller 2015, 49–50)

Until this moment, André demonstrates a strong awareness of self, though he struggles to orient himself in time, and not for lack of trying. It is only a small detail, but here, André seems anachronistic, appearing out of step with time. People with dementia in narratives often appear or are positioned as living out of time. It is a type of demarcation. Melanie Wilson’s Autobiographer6 precludes the possibility for Flora to present as anachronism, as temporality is made redundant in its lack of fixed temporal or spatial elements. The work is non-linear and contains no naturalistic staging, so the experience of the play is one of a non-reality—it is without place and without time. Relieved of these contexts, the language is permitted to transcend clinical characteristics and freely express story. Autobiographer is a sound- and language-based work7 in which the spoken word represents a reclaiming of language, memorial, and identity (where other works may use speech to indicate the linguistic decline characteristic of dementia). The language is not structured around conver­ sations, but instead fragments of Flora’s history are arranged in trickles and streams, that is, sometimes as paragraphs and other times in short lines of few words. Language is a significant consideration for dementia narratives. Dementia impairs language skills, both comprehension and expression. However, as Steven R. Sabat has discovered, “standard neuropsychological measures of language function do not give us a complete picture of what [people with dementia] think or can think and feel” (2001, 89). Autobiographer may be language-driven, but it is not mimetic in its dialogue; Wilson describes it as a “poem for performance” (Wilson 2012, 5). The physical staging parallels this, collapsing a dramatic sense of place and circumstance, and with it, expectations of cohesive characterisation and linearity. Autobiographer stages an inner world, and yet the character to whom it belongs is multiplied and layered. It is her inner world on which the audience intrudes and not the other way around. The subject at the centre of the work, Flora, is multiplied; five versions of herself at different ages exist simultaneously. In this way, the spoken word in the play could be described as either monologue (it is a one-character show) or dialogue (multiple performers are speaking). The script denotes that Floras 1 through 5 are, respectively, a girl in her late teenage years, a woman in her mid-30s, a woman in her early 50s, a woman in her late 70s, and a girl aged around 8. Playing with the fluidity that Medina (2018, 32) describes, in Autobiographer, Flora’s interpersonal relationships are only with herself (and, to an extent, with the audience). Additionally, Flora is sometimes featured in a voiceover, “representing the internal voice” (Wilson 2012, 15), which is unusual considering the interior nature of the play. These Floras interact in a way that is not typically dramatic. For example, while they do not have dialogue with one

30 “We’re All in Our Own Little World” another, they do finish each other’s sentences, fill in the gaps of memories, and sometimes contradict one another. Early in the play, the transitions between Floras slide, indicating that they are all one person existing simultaneously. These moments are embedded in larger passages of speech that suggest that the ages of the actors onstage are not so much associated with time, but with connections to different memories and states of mind. Other performances about dementia use younger versions of characters to stage flashbacks or blur time, as noted, but Flora’s selves exist concurrently. When Flora 2 says “You’ll say, ‘How are you feeling?’ And I’ll think … I am a 76-year-old woman, but inside I feel like I’m 33” (Wilson 2012, 19), she is a woman in her 30s. Though this alludes to retrograde amnesia and Flora’s difficulty to grasp chronological time, her age remains in flux throughout the performance and this blurring makes key events in Flora’s life atemporal. Wilson plays with tense throughout the play. In one instance, Flora 1 recalls a memory in present tense before shifting unexpectedly to the past tense. It is as though she is experiencing the memory and then becomes aware that it is an encounter from the past. Flora in her late 70s then recalls what seems to be the same event, solely in present tense. In a later part, the Flora in her late teens describes her time living in London in the past tense, although elsewhere in the script, Flora describes this in the present tense. In this way, the versions of Flora are fluid and none are bound to certain periods of Flora’s life. The play with tense within passages of the script can also serve to acknowledge Flora’s memory loss in the spoken text itself. FLORA FLORA FLORA FLORA FLORA FLORA FLORA FLORA FLORA FLORA FLORA

1: 2: 3: 4: 1: 2: 1: 3: 4: 1: 4:

I don’t want to get married. But then … I’m not so sure now … Is that because I did? And then forgot? That’s how it seems to me You got it wrong? I know nothing. I know nothing that’s the point it’s like I know nothing I see you … little storm inside me fight back. Fight back I have this pattern to keep hold of. (Wilson 2012, 37–38)

This interchange between Floras is reminiscent of Krapp’s interactions with his pre-recorded younger self on tape in Beckett’s Krapp’s Last Tape (1958). At first the unknowing appears to be associated with the age of each Flora, but is then revealed to be confusion resulting from retrograde amnesia. Flora recognises this and acknowledges her dementia, describing it as a storm, a parallel with Shakespeare’s Lear’s perception of his dementia.8 Flora expresses that she needs

Dementia from the Inside 31 to fight this storm, in order to hold onto her pattern. In this segment, Flora confesses her fear of unravelling, of forgetting herself. Here, Wilson references the notion of the narrative self, a contentious idea that suggests that autobiographical memory constitutes self: the implication, of course, is that a person with memory loss is losing their self. It has been challenged but it ultimately persists in attitudes towards people with dementia. For example, in the latter scenes of The Father, André cries out: “I feel as if I’m losing all my leaves” (Zeller 2015, 62). Levy notes the belief that “[m]emory links my past to my future self, and makes me the person I am” means that dementia is seen “as the gradual unravelling of the person themselves” (Levy 2007, 159). What Levy alludes to is the concept of the “narrative self,” or “narrative identity,” which denotes that our identity is an arrangement of our memories of life experiences and relationships, an idea with roots tracing back to John Locke’s writing on the self. Robyn Fivush and Catherine Haden’s edited collection Autobiographical Memory and the Construction of a Narrative Self: Developmental and Cultural Perspectives (2003) comprises discussions of this idea, and, though it is not about dementia, the logic of the narrative self inherently problematises selfhood for people with dementia. The memory loss resulting from dementia is, therefore, thought to erode narrative identity. Mills suggests that as dementia progressively weakens memory, “the narrative dissolves and fades into oblivion. Narrative identity is lost” (1998, 175). Yet, Mills does go on to argue that people with dementia continue to have both psychological and biological lives and stresses the importance of person-centred care (1998, 175). Many researchers and philosophers have moved on from or reinterpreted the notion of narrative identity, for example, Rosi Braidotti who proposes that memory “is the active reinvention of a self that is joyfully discontinuous as opposed to being mournfully consistent” (2013, 167). Autobiographer invites the notion of narrative identity (autobiographical memory as constitutive of identity) but challenges its adherence to chronology. Even the title of the play poses a challenge to the idea that people with dementia lose their self as a result of losing memories. The work’s opening monologue by Flora 2 destabilises the notion of accumulative memory (stories getting steadily larger) and dismisses the idea that linearity is key to selfhood: It’s never been my impression from life that things hang together. It’s never been apparent to me, from living, that stories get steadily larger. But rather … that filaments of attachment thread between the most disparate of things … of people… events … words. I’ve always found that quite … inspiring … reassuring somehow. Ingenious. And yet now, I get into it, and the things … people … events … words rise up and get me by the nose and all I can do is follow until they stop. (Wilson 2012, 17) Here, Flora 2 speaks abstractly about memory loss and memories that intrude on the present, though not in terms of deficit. She talks instead of filaments of thread

32 “We’re All in Our Own Little World” connecting disparate thoughts. She expresses an embrace of this incongruity. Threads, patterns, and patchwork form a motif throughout the play, used to describe the construction of selfhood. Her description of language leading her, as opposed to her leading language, speaks to losing control over linguistic expression, yet the playful description of the words “getting her by the nose” does not lament this loss of control. This concept informs the work’s progression. Flora follows threads—words, sounds, memories, and ideas—from one to the next. This progression, while dis­ allowing linearity in the form of chronology, contains its own kind of logic. As the audience experiences it, we are in Flora’s internal world, and it is she that leads us through it. Thus, Flora is positioned as an active subject in the work, not a passive victim of dementia and loss of selfhood, though her selfhood is potentially re­ constructed. Following the metaphor of filaments of thread, Flora describes sewing, unpicking, and patching herself, and “put[ting] myself together” and “the pattern of me is fraying” and “my pattern is fading, deranging, ageing” (Wilson 2012, 26). This posits that if selfhood is constitutive, it is not necessarily congruous or chronologically organised, and that cannot be unravelled completely, but instead reconstituted. Regarding Autobiographer’s logic of progression, overall, the spoken text does become increasingly fragmented throughout the course of the play, alluding to the linguistic degeneration that results from dementia. As such, fragments, attached by often imperceptible filaments, replace cohesive dialogue. In the place of temporal descriptions like years or ages, Flora often signposts her memories by introducing them using phrases such as: “Here’s one I know,” “I’m talking to you now before I forget. Here’s one …,” “It comes to me now, very clearly, just what I wanted to tell you,” “I know this one,” and “I have this story … a collection of things …” (Wilson 2012, 19–30). These phrases signal the begin­ ning of a memory and draw together the filaments of thread, but also give the sense that Flora herself is encountering them, as opposed to recalling them. As the performance moves towards its close, the structure of the text becomes increasingly fragmented. With this, the coherence of Flora’s recollections breaks down. Brief phrases make reference to preceding recollections fleetingly but no clear logic is apparent from line to line. In spite of this increased fragmentation and more frequent instances of forgetting, Wilson closes her work with each Flora delivering the affirmation, “I am still here” (Wilson 2012, 56). This ending positions Flora not as disappearing, but pluralised and fluidly moving between these states. She is a teenager, a middle-aged woman, and an ageing woman—all at once—even if she does forget some of the stitches and patches. Place/space Autobiographer is staged in a performance space where the audience surrounds, and is at level with, the performers (Figure 1.1). With its lack of set and props, the space eludes the sense of a concrete place. So, just as it lacks fixed time, it is similarly unmoored from place, despite oblique references to place and time in

Dementia from the Inside 33

Figure 1.1 Autobiographer. The performers Alice Lamb, Melanie Wilson, Penelope McGhie, and Janet Henfrey wear matching simple dark grey dresses. They represent Flora at various ages: in her late teenage years, in her mid-30s, in her early 50s, and in her late 70s. They stand in a small performance area. They are surrounded by an audience who is seated. The four Floras look out towards the audience, each facing a different direction. The eldest Flora looks as though she is walking towards a section of the audience, perhaps speaking to them. Photo credit: Monika Chmielarz.

Flora’s remembrances. Even Flora’s recollections are mostly described in sensory terms, memories expressed in relation to the environment: hot/cold, the field, the gate, the grey sky, the cold wind, the snow, the earth, the trees, and the front seat of the car. The environmental descriptors supplant specific place names or relational labels like “our house” or “our car.” Though the work is placeless in setting and situation, generic places are briefly evoked throughout the text. The penultimate act of Wilson’s script—in its entirety—contains no scripted dialogue and is instead taken over by a soundscape that evokes place: There is an overwhelming auditory environment of real world sounds, like a shopping centre, supermarket or public place. Augmented by fragments of other sounds. Familiar sounds becoming alien. The performers are engaged in duets of repetitive, restless movement […] Hand to chest Finger to gum Hand to face The space in front Wait (Wilson 2012, 50)

34 “We’re All in Our Own Little World” The described soundscape9 injects a sense of place into the performance, though the mix of sounds makes it impossible to grasp a concrete sense of place. The overwhelming layering of the everyday sounds also reflects an experience of disorientation in familiar places, evoking a dichotomy of familiar and unfamiliar. The lighting here diverges from the previous exposition of Flora’s fluency, and is now representative of Flora’s “befuddled, crisis state,” as the script denotes. The movement sequence complements this deviation, as it demonstrates a subversion of everyday movement through its restless repetition. The almost chronic nature of the repetition turns the routine absurd, makes strange of the familiar. Secondly, the physical language described resonates with a doctor’s examination to gauge a person’s visuospatial orientation.10 Still the sequence is abstract en­ ough that Flora remains unmoored from other characters and the play remains placeless. Meanwhile, place is decidedly troubled in The Father. The Father also evokes increasing placelessness as it goes along. The furniture and props disappear progressively throughout the play, until the space becomes clinical. The play opens in a domestic setting, presumably André’s home, but dialogue soon indicates that it is his daughter’s home, at least, according to Anne and her partner, though André disagrees. André insists, “I’m not leaving my apartment! I’m not leaving it!” but the Man tells him, “This isn’t your apartment André” (Zeller 2015, 15), and that André had moved in with them while he was waiting for another day carer. André is reminded about the apartment several more times. In one scene, André explains to a day carer that I bought it more than 30 years ago. […] My daughter is very interested in it. […] And now she’d like to convince me that I can’t manage on my own. The next stage will be to send me away I don’t know where … Although, in fact, I do know where. I know. Obviously, it’ll be a much more efficient way of getting hold of my apartment. (Zeller 2015, 24) As I see it, the question of who owns the apartment is irrelevant. Instead, André’s insistence that he owns the space, and Anne’s reluctant assertions that he does not, serves as an analogy for André’s diminishing agency at home. This reflects the ways in which cognitive decline impairs independent living in one’s own home. In juxtaposition to the play’s troubled temporality, if one thing is linear in The Father, it is the growing sparsity of the set. The playtext describes how set pieces are gradually removed between scenes. That is, the play approaches placelessness, though unlike Autobiographer, location is implied in the dialogue. As an example of the transition that space goes through, at the top of scene 3, Zeller describes: “Simultaneously, the same room and a different room. Some furniture has disappeared: As the scenes proceed, the set sheds certain elements, until it becomes an empty, neutral space” (Zeller 2015, 19). Correlatedly, scene 13 includes the following direction: “By now, the apartment is practically empty” (Zeller 2015, 51). This time, André ad­ dresses the sparseness: “Look around you. There’s no furniture.” Anne responds:

Dementia from the Inside 35 “It’s always been like this, Dad. It’s the way the apartment is designed. […] You’re mixing it up with your apartment, Dad. It’s always been like this” (Zeller 2015, 52). André’s experience of reality is undermined. For interest and for comparison, the 2020 film does make changes to the set, but it does not subtract. Cinema cannot achieve placelessness like an empty stage can. While in the works discussed in Chapters 2 and 3 and those in Part 2, place is more distinct and consequential for the stories told, those discussed in Chapters 6 through 8 engage with placelessness in distinct ways. As André’s/Anne’s apartment becomes less like home, the possibility of a nursing home looms, often referred to euphemistically, shrouding the transition from home to formal care in taboo. The spectre of institutional care (that is, a nursing home) is staged in some plays and merely alluded to in others. (For a recent example, the images of a hospital ward also haunt David Megarrity’s The Holidays (2020)11.) The spectre of the care home or paranoia and fear about the nursing home reflect Chris Gilleard and Paul Higgs’s (2017) observation that the nursing home has come to epitomise the “social imaginary of a fourth age.” In the new millennium, dementia and the nursing home have become indissoluble entities, the latter the institutional location where the former reaches its ultimate form. They serve as the collective representation of the fourth age, signifiers of the failure to age well, to age mindfully, and to sustain the practices of self-care. (Gilleard and Higgs 2017, 235) Whether André has been paranoid that Anne wants to get him out of the way, his story does end in a nursing home, a rather anonymous place without his collected furniture and belongings, cared for by strangers, and his only child living in a different country. His fears have been realised. By the end of the play, the stage represents a formal care setting/institution. When it manifests, the formal care setting is white and presumably sparse. The script denotes only the following detail: “Awhite bed, reminiscent of a hospital bed. André doesn’t know where he is. Then the woman comes. She’s wearing a white coat” (Zeller 2015, 58). The white is clearly indicative of clinical settings, but another reading is white rep­ resenting surrender. In the introduction to their edited collection, Sally Chivers and Ulla Kriebernegg—and the contributors to their collection—recognise the nursing home as “a place that too often is construed as a failure, a last resort, and a fate worse than death” (Chivers and Kriebernegg 2017, 26). Care partners themselves tend to experience mixed feelings when an individual goes into care, including guilt, failure, and relief (Jacobson et al. 2015). André’s fear of being displaced from his home and checked into an institution, no matter the type or quality, echoes a fear that many share. “Whether in a nursing home, care home, retirement home, assisted living, or other form, institutional care for seniors offers a cultural repository for fears and hopes about an aging population” (Chivers and Kriebernegg 2017, 17). Here, Chivers and

36 “We’re All in Our Own Little World” Kriebernegg recognise that our fears of nursing homes are not only personal or even familial, but a collective fear as to how we will effectively support an ageing population. Character’s relationships André is not a wholly sympathetic character. The father–daughter dynamic at the centre of the play is a strained one, especially in comparison to the absent daughter whom he openly declares to have preferred. Gardner (2014) has observed “strong echoes of King Lear, both in the impending madness and the father–daughter relationships.” The Father is one of four plays that Elinor Fuchs reviewed across two articles (2017a, 2017b) where she writes “a standard dementia plot is emerging: Older Daughter (why is it always a daughter?) is sacrificing her life to caregiving.”12 Despite what appears to be Anne’s best efforts, André berates her throughout the play. Anne is also experiencing pressure from her partner to schedule André into formal care. In his way, while the main thrust of the play—and of this analysis—is André’s experience of dementia, these aspects of the father–daughter relationship do position the audience to empathise with Anne. More commonly, this story would position Anne at the centre of the story. In this vein, we witness a turning point for Anne when she tells Pierre how “he didn’t recognise me … When I went down to buy the dinner … I … I don’t know. It did something to me” (Zeller 2015, 27). This reflects findings from Pat Sikes and Mel Hall (2018). In their article about “The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia,” Sikes and Hall (2018) platform the experiences of adult children who have struggled to connect with their parent with dementia in the way they perhaps used to. They found “expectations that [care partners] will behave and feel towards that parent as they did before are a source of distress in what is already a challenging situation” (Sikes and Hall 2018, 180). Some of their study’s participants reported their parent’s unkind, paranoid, and even violent behaviour. There are two other scenes that shift our attention towards Anne’s experience. In one scene, she is alone, though she speaks as if sharing the scene. […] I went into his room. Dad’s room. He was asleep. He looked like a child. […] And I don’t know what came over me, a kind of wave of hatred, and I put my hands around his throat. Gently. I could feel his pulse beneath my hands. Like little butterflies. And then I squeezed. My hands. Squeezed them very hard … He didn’t open his eyes. He didn’t close his mouth. It was just living through one bad moment. One minute. Hardly that. One bad moment. Still. But it was curiously pleasant. Pleasant and still … When I relaxed the pressure, when I took my hands away, I sensed he was no longer breathing, that it was over at last. It was as if all the butterflies had flown. Yes. He had a

Dementia from the Inside 37 slight smile. He was dead. He was dead, but I had the impression he was thanking me. (Zeller 2015, 26) What she describes could be taken for a dream, a jump forward to a future reflection, an alternate reality, a vision of André’s paranoia, or a fantasy of Anne’s. In a later scene with Pierre, Anne confirms it is a “terrible nightmare” she had (Zeller 2015, 28). Anne’s dream reinvigorates the “thriller” conventions that some have observed. The usual caring-as-burden narrative is complicated by the thrillerstyle plot (to borrow from Gardner (2014)) of whether Pierre/Man is violent towards André. In a scene between the Man and André, the former gives the latter a couple of “little slaps.” The Man verbally threatens André and then: “He raises his hand, as if preparing to deliver another slap, and André covers his face. For a moment, he’s in this humiliating defensive position” (Zeller 2015, 48). A blackout brings a scene change as Anne returns from the kitchen. She sees her father cowering but has no sense that the Man/Pierre has threatened him. As far as André knows, the physical intimidation was real, but to Anne, his fear appears out of nowhere, unprovoked. Importantly, the play’s dialogue gives indications of André’s own erratic and sometimes aggressive behaviour, but—aside from André’s cruel words towards Anne—we do not witness onstage any act of physical aggression or intimidation from André. The audience never knows whether the claims of André’s violence or the threats of the Man’s violence are real or not. As noted, the audience’s grasp on the play’s events only diverges significantly from André’s quite late in the play. That is not to say that up until that point an audience would be convinced that, for example, the apartment is André’s. Knowing a character has dementia does introduce the notion of an “unreliable narrator.”13 Dementia, as subject matter, allows some of these details to be chalked up to memory loss, though we sympathise with his confusion. Similarly, an audience would be unlikely to believe that Anne is trying to steal from her father. Just by the fact that the “truth” is kept from the audience, the play is significant. There is a kind of denial of catharsis in that we never find out; we are kept in the dark with André. Meanwhile, the other characters in the play seem to expect too much from André as a person with dementia. The other characters will say to him things like “don’t you remember” and “remember yesterday.” This unhelpful language is not limited to dementia narratives. In their study exploring effective commu­ nication between people with dementia and their care partners, Jeff Small and JoAnn Perry advise “that caregivers can substantially reduce communication problems by not using episodic questions (e.g., Do you remember …?)” (2005, 133). In the play, this language also reminds the audience that those around him do not share his world, his experience of reality. No one else in the play is at all confused, so the confusion is his alone (unless you count the audience). The

38 “We’re All in Our Own Little World” audience can share this frustration, because we “don’t remember” either, or perhaps we do, but the detail in question was replaced by another. In turn, or perhaps to reconcile the shifting details in his mind, André projects his memory loss on others. He tells Anne/Woman: I’m worried about you. Don’t you remember? She doesn’t remember. Are you having memory lapses or what? You’d better go and see someone, my dear. I’m talking about something that happened not two minutes ago. I could have timed it. (Zeller 2015, 17) Despite the expectations of André to remember, there are instances of in­ fantilisation from the day carer, Laura. She says: “Time for your medication. Here we are. Best to take them now. Then it’s done. Don’t you think? There are three today. This little blue one … That’s the one you like. Your little blue pill. Pretty colour, isn’t it?” And André asks: “why are you speaking to me as if I were retarded?” (Zeller 2015, 42–43). André himself begins to exhibit some childlike behaviour close to the play’s end. Anne describes how he asked for a song before bed: “He looked so sad. He was like a little boy. I told you, he asked me to sing him a lullaby. Brought tears to my eyes” (Zeller 2015, 40). Then, in the play’s final scene, André asks for his mother: “I want my mommy. I want her to come and get me. I want to go back home. André starts sobbing” (Zeller 2015, 62). The woman (nurse) takes him in her arms and the final line of the play is hers as she gently rocks him: “Now. Don’t be a baby. Come on. Come with me. All right? Come on. Easy. Easy. Shush. Shush. You’ll be all right in a minute. You’ll be all right. Shush …” (Zeller 2015, 63). As Billington (2015), quoting Shakespeare, observes, “The shadow of King Lear is never far away: especially the idea that “when we are born we cry that we are come to this great stage of fools” and that we die in much the same way.” This final image of André offers a juxtaposition to moments where André strongly asserts his strength of character and cognitive wellness. In one scene, André embodies the stereotype of an old man, hunching over, and “pulls a face representing an old man” (Zeller 2015, 15). Later, similarly, André says “Must be a difficult job. Spending all day with some … He makes a face signifying an invalid. Am I right? I couldn’t stand it” (Zeller 2015, 22–23). This contains an underlying comparison between physical ageing and cognitive ageing. Despite representing an interior experience of dementia, André’s rela­ tionship to his self is not deeply explored. One thing we do know about André is his defiance; he certainly never concedes he has dementia and he resists the idea that he is an older man. Flora’s relationship to herself is largely implicit in her encounters with her memories and her plurality. Flora’s multiple selves appear to be living simulta­ neously at different points on the “temporal gradient” or at least moving fluidly along it. As scripted in Part 3: “Floras turn in and catch sight of each other as hal­ lucinations. They halt abruptly and after a while perform a mirrored gesture together, as if

Dementia from the Inside 39 checking the existence of the others” (Wilson 2012, 47). Kathleen Woodward notes that “Gazing in the mirror is a ubiquitous trope in the image-repertoire of age” (2006, 168). Indeed, the sense of barely recognising oneself in a mirror (or perhaps in a photo) is likely a relatable sensation. More specific to ageing with dementia, though, this physical sequence evokes the “mirror sign” (or autop­ rosopagnosia), a recognised demonstration of dementia. The sign “is a form of delusional misidentification in which patients believe that their own reflected image in a mirror is another person” (Brown and Hillam 2004,2004, 51); their reaction may be to attempt a conversation with their reflection or to yell out, thinking there is an intruder in their home. The mirror sign occurs as part of the progression of retrograde memory loss at a point when the person may believe themselves to be younger than they are. Without bowing to the implications of narrative identity, Autobiographer does interrogate a troubled relationship to self and the details of one’s past. And by isolating Flora from other characters, it actually prioritises not only an interior portrait, but a person with dementia’s relation to self. Additionally, despite Flora’s isolation from any other characters, she is both multiplied and witnessed. In her plurality and the distortion of tense, the character of Flora is mercurial. By extension, relationships are nimbly projected onto members of the audience. By virtue of the performance’s physical arrangement, intimacy can be quickly established between performer and audient. During the performance, the actors move between being merely witnessed by and interacting directly with the audience. The Floras sometimes address an audience member directly. These interactions are usually structured around a question about the time of year or a word that Flora is grasping for. Wilson scripts each instance to allow for either a response or unwillingness from the audient. In the case of the latter, the actor says, “Surely it doesn’t matter, someone will know” (Wilson 2012). To interact with the audience, the performer sometimes sits beside the person they are addressing, which increases the familiarity of the encounter. Other encounters with the audience throughout the work include a clinical exercise, such as counting backwards from 20 or spelling WORLD backwards. Other times, Flora tells the audience member something about herself, for example, describing her experience living in London; though, mostly she discusses her children, partic­ ularly her daughter. Flora also begins to ask audients different kinds of questions: tangible ones, “What season is it?” (Wilson 2012, 31) and “Where do you live?” (Wilson 2012, 52); abstract ones, “What is the weather in your head?” (Wilson 2012, 53); and some that acknowledge her memory loss, “Have we been here before?” (Wilson 2012, 53). Responses to tangible questions make their way into Flora’s description of herself, as she borrows forgotten details from these strangers with whom she has generated familiarity: FLORA 4: Where do you live? (Audience answer: ‘I live in X’)

40 “We’re All in Our Own Little World” I live in X I have a daughter she’s very … What is it? You know … she’s … what is it? (Audience answer: X.) X, my daughter’s very X. (Wilson 2012, 52) Here, Flora’s memory loss is evident in her need to fill gaps in her self-description. Flora’s proximity to, and direct address of, the audience in these instances both establishes an intimacy and stages a dichotomy of the un/familiar by collecting details and taking them on herself. In these moments, the audient must interact with a stranger and face being asked questions to which they may not know the answer. In this way, the direct address in Autobiographer briefly simulates for the audience the experience of a person with dementia, albeit more gently than in The Father. The audience’s placement on the fringe of the performance is, for the most part, not intrusive, and representative of a community. However, towards the end of the play, Flora begins to behave as through interrogated, as if growing weary of questions; the communal atmosphere of the space collapses somewhat. Two approaches to the interior experience Autobiographer precludes linearity and a recognisable chronology. It is similarly without concrete place. To stage Autobiographer in a naturalistic set—designating spatial and temporal contexts—would render Flora unmoored from time and place; the play would be about her disorientation. As it is, Wilson’s choices for the work’s dramaturgy allow Flora’s plurality to go unchallenged and similarly permit the language to be a vessel for Flora’s fragmented recollections, and even allow these fragments to act as texture and rhythm in the performance. Instead of Flora being positioned as trapped in her world, detached from a consensus of reality, the audience are invited into an alternate experience of reality. Flora’s mercurial inner world is the diegesis, albeit an abstract one. This contrasts greatly with The Father’s beginning a complete set and a stronger, more adult André. Zeller’s play also explores placelessness as an expression of dementia, using it instead to signal a deterioration or loss. Still, both plays afford an audience a shared reality with the character with dementia, and The Father has clearly resonated with many audiences. If traditionally dramatic theatre is concerned with mimesis, then it aspires to represent this consensus of reality. If drama must have coherence, a linear arrangement, and catharsis for its audience, then narratives of dementia presented in this way typically represent the character with dementia as losing their self. Contemporary works that resist Aristotelian logic may, therefore, better facilitate new explorations of experiences of people with dementia. In a review of The Lion’s Face, a contemporary opera about dementia, Bella Todd (2010) wonders “whether

Dementia from the Inside 41 dementia is not much a theatre taboo as innately anti-theatrical.” Her musing about a perceived anti-theatricality inherent to dementia is not unhelpful in that it does question the appropriateness of linearity and traditionally dramatic character and story development. However, as these two plays—and others in this book—show, theatre is certainly capable of exploring other narrative modes to perhaps get a little closer to empathising with and affording witness to interior experiences of dementia. These endeavours to explore inner experiences of dementia seek to share in a person’s “moving fluidly through” their own experience of reality (to borrow from Shabahangi), and position the audience to share in their confusion, exposure, and unfamiliarity, and, in the case of gentler dramaturgies such as Autobiographer’s, also a sense of intimacy and community. This book now broadens its gaze to other dementia narratives both including interior experiences of dementia, as well as experiences of carers, care partners, spouses, and children. Notes 1 Other examples of familial dementia memoirs include John Bayley’s books about his high-profile wife, Iris Murdoch’s, dementia and “their evolving relationship” ( McColgan 2004, 171), Iris: A Memoir of Iris Murdoch (1998), and Iris and the Friends (1999). Sue Pieters-Hawke similarly wrote about her mother, Hazel Hawke’s, dementia: Hazel: My Mother’s Story (2011) and Hazel’s Journey (2004, written with Hazel Flynn). 2 Memoirs written by people with dementia include: Robert Davis’s My Journey into Alzheimer’s Disease (1984), Diane McGowin’s Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s (1993), and Larry Rose’s Show Me the Way to Go Home (1996). 3 The titles of books are often a clear indication of the author’s positioning of dementia. McGowin (1993) allegorises her Alzheimer’s disease as a labyrinthine maze in her book’s title, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s. Some books marketed to help understand dementia also lead with a clichéd image of the condition by way of their title ( Innes 2009), for instance, Alzheimer’s Disease: Coping with a Living Death (Woods 1989) and The Loss of Self (Cohen and Eisdorfer 1986). McColgan (2004, 170) observes that “titles of personal accounts suggest journeys into dementia, being engulfed and lost, and longing to go home.” 4 It has inspired a French film, Floride (2015, Philippe Le Guay), and been turned into an Anglophone film, The Father (2020), starring two high-profile actors, Anthony Hopkins and Olivia Colman, and screenwritten and directed by Zeller himself. Via Hampton’s translations, Zeller has found great success with both Francophone and Anglophone audiences. The Mother (2011) and The Son (2018) form a triptych with The Father. Each explore family relationships around a central struggle, “middle-aged angst” in The Mother, “adolescent depression” in The Son, and dementia in The Father ( Billington 2019). Zeller has further explored dementia in The Height of the Storm (2018)—also translated by Christopher Hampton and well received in the UK—delivering a new iteration of the same family. Billington (2015) notes the “striking parallels” with The Father: “Once again we have a cantankerous oldster with dementia who is called André and has two daughters, Anne and Elise. The difference is that this André is a once-famous writer seemingly unable to accept that his wife of 50 years, Madeleine, is dead. Or is she?”

42 “We’re All in Our Own Little World” 5 My analysis of The Father is based on the English-language script translated by Christopher Hampton. The script denotes the actor swaps that occur in the drama. It also outlines the changes to the set as the scenes progress. 6 I had access to the script for Autobiographer. I also drew on photos and video snippets available online ( https://vimeo.com/29684361), and Wilson’s website ( https:// melaniewilson.org.uk/Autobiographer-2011). Lastly, I interviewed Wilson, who ex­ plained in more detail the physical arrangement of performers and audience in the space. 7 Briefly, radio plays and sound-based works include: Autobiographer, Also a Mirror (2011), Ancient Mysteries (2011), and ‘A’: The Christmas Party (2008). 8 In King Lear, the storm that rages in later acts is adopted as an allegory for Lear’s mood and behaviour. He is described as “One minded like the weather, most uniquely” ( Shakespeare c1606, 3:1:2). Additionally, at one point, Lear himself compares the storm to the malady in his mind, adding that the storm does no physical damage, because all his pain is in his head. 9 Several audio recordings are available online at https://soundcloud.com/melanie-j-wilson/ autobiographer-introduction, https://soundcloud.com/melanie-j-wilson/autobiographerbreakdown and https://soundcloud.com/melanie-j-wilson/autobiographer-interlude-part 10 For example, the MMSE and RUDAS are common models for testing dementia. The sequence in Autobiographer demonstrates a simple test for cognitive decline where a subject is asked to point to different parts of the body and/or face in order to gauge their understanding of the language and their visuospatial orientation. 11 In David Megarrity’s The Holidays (2020), Oliver and his mother and father arrive at Grandad’s house. Grandad has recently gone into hospital, his dementia advancing. While Oliver is unaware as to where Grandad is, we see flashes of a hospital setting throughout the play: Flouros flicker and flick away the magic of theatre. OLIVER notes the change. Blue chairs. Corridor noise. A flash-forward. Is it a hospital? Unclear. [Line break.] Smooth surfaces onscreen: Horizontal stripes of linoleum, tan wall and blue bumper guard. Other glimpses of still stainless steel wheels and a plastic panel. [Line break.] A holding space where the waiting [room] is too brightly illuminated. OLIVER alone in a corridor. He turns to face the door behind him. He cannot cross the threshold. He gestures to the door, half-pointing it out to someone offstage. This is the place. Then the glimpse is gone ( Megarrity 2020, 16). Similar glimpses occur throughout the play until several later scenes where Oliver accom­ panies his father to the hospital and we see the setting manifest. 12 An extended passage reads: “a standard dementia plot is emerging: Older Daughter (why is it always a daughter?) is sacrificing her life to caregiving. Should she send Mom to a nursing home? Shouldn’t the younger siblings take more responsibility? Or how about bringing in a robot to keep Mom company?” ( Fuchs 2017a). The latter ref­ erences the artificial intelligence plot in Marjorie Prime, in which a woman with dementia’s deceased husband is embodied in robot form to comfort her. In these two articles, Fuchs is writing about The Father alongside Marjorie Prime (2015), Dot (2015), and The Humans (2014). 13 Wayne Booth coined the term “unreliable narrator” in The Rhetoric of Fiction (1961). Fiona Otway provides a helpful explanation of the device: “Unreliable narrators, whether written from a first-person perspective or from a third-person limited per­ spective, whether seen or unseen within a given story, are often identified by the manner in which they compromise the reader’s grasp on the diegetic reality depicted” ( Otway 2015, 4). Jeffrey Sweet (2013) identifies a similar application of the “unreliable narrator” in his review of The Other Place. Marla Harris (2019) also notes the relevance of the device to novels about detective characters with dementia. “While there has been a long history of silencing people with dementia on the basis that they are ‘unreliable narrators’ or ‘confabulators,’ such objections can no longer

Dementia from the Inside 43 have currency today when it is recognised that all our narratives are ‘multiple, mul­ tivoiced, discontinuous and fragmented’” ( Capstick and Clegg 2013, 252 quoting Sermijn et al. 2008, 636).

References Batch, Morgan. 2020. “Dementia in dramaturgically hybrid performance and the perform­ ance of objects.” Performance Research 25 (4): 5–73. doi: 10.1080/13528165.2020.1752572 Beard, Renée L. 2016. Living with Alzheimer’s: Managing memory loss, identity, and illness. New York University Press. Bender, Mike Philip and Richard Cheston (1997). “Inhabitants of a Lost Kingdom: A Model of the Subjective Experiences of Dementia.” Ageing and Society 17(5): 513–532. doi: 10.1017/s0144686x97006570. Billington, Michael. 2015. “The Father review – Ingenious Alzheimer’s drama with echoes of Lear.” The Guardian, 6 October. https://www.theguardian.com/stage/2015/ oct/06/the-father-review-alzheimer-s-kenneth-cranham-claire-skinner-florian-zeller Billington, Michael. 2018. “The Height of the Storm review – Pryce and Atkins are magnetic.” The Guardian, 10 October. https://www.theguardian.com/stage/2018/ oct/09/the-height-of-the-storm-review-jonathan-pryce-eileen-atkins-florian-zeller Billington, Michael. 2019. “The Son review – Florian Zeller’s frightening tale of teen depression.” The Guardian, 27 February. https://www.theguardian.com/stage/2019/ feb/27/the-son-review-florian-zeller-family-kiln Bitenc, Rebecca A. 2020. Reconsidering dementia narratives: Empathy, identity and care. Routledge. Braidotti, Rosi. 2013. The posthuman. Polity Press. Brown, Jeremy and Jonathan Hillam. (2004). Dementia: Your questions answered. Livingstone. Burke, Lucy. 2014. “Oneself as another: Intersubjectivity and ethics in Alzheimer’s illness narratives.” Narrative Works: Issues, Investigations, & Interventions 4 (2): 28–47. Capstick, Andrea and David Clegg. 2013. “Behind the stiff upper lip: War narratives of older men with dementia.” Journal of War & Culture Studies 6 (3): 239–254. doi: 10.11 79/1752627213Z.00000000021 Chivers, Sally and Ulla Kriebernegg. 2017. “Care home stories: Aging, disability, and long-term residential care.” In Care home stories: Aging, disability, and long-term residential care, edited by Sally Chivers and Ulla Kriebernegg, 17–26. Transcript. Cohen, Donna and Carl Eisdorfer. 1986. The loss of self: A family resource for the care of Alzheimer’s disease and related disorders. W.W. Norton & Company. Davis, Robert. 1984. My journey into Alzheimer’s disease. Tyndale. De Rover, Mischa, Sharon Morein-Zamir, Andrew D. Blackwell, and Barbara J. Sahakian. 2008. “Cognition and ageing: Dementia.” In Handbook of developmental cognitive neuro­ science, 2nd ed., edited by Charles A. Nelson and Monica Luciana, 607–619. MIT Press. Fivush, Robyn and Catherine A. Haden (Eds). 2003. Autobiographical memory and the construction of a narrative self: Developmental and cultural perspectives. Lawrence Erlbaum Associates. Forster, Margaret. 1990. Have the men had enough? Penguin. Fuchs, Elinor. 2017a. “Dementia: The theater season’s “in” disease part 1.” The Theatre Times, 16 January. https://thetheatretimes.com/dementia-theater-seasons-disease-part-1/

44 “We’re All in Our Own Little World” Fuchs, Elinor. 2017b. “Last spring, dementia made it to Broadway! Part 2.” The Theatre Times, 4 February. https://thetheatretimes.com/last-spring-dementia-made-broadway/ Gardner, Lyn. 2014. “The Father five-star review – A savagely honest study of dementia.” The Guardian, 23 October. https://www.theguardian.com/stage/2014/oct/23/thefather-review-ustinov-theatre-royal-bath-florian-zeller Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Gilleard, Chris and Paul Higgs. 2017. “An enveloping shadow? The role of the nursing home in the social imaginary of the fourth age.” In Care home stories: Aging, disability, and long-term residential care, edited by Sally Chivers and Ulla Kriebernegg, 229–246. Transcript. Hall, Mel and Pat Sikes. 2017. “‘It would be easier if she’d died’: Young people with parents with dementia articulating inadmissible stories.” Qualitative Health Research 27 (8): 1203–1214. doi: 10.1177/1049732317697079 Harris, Marla. 2019. “The case of the missing memory: Dementia and the fictional detective.” Clues 37 (1): 51–60. Ignatieff, Michael . 1993. Scar tissue. Farrar, Straus and Giroux. Innes, Anthea. 2009. Dementia studies: A social science perspective. Sage. Jacobson, Janelle, Judith Streak Gomersall, Jared Campbell and Mark Hughes. 2015. “Carers’ experiences when the person for whom they have been caring enters a resi­ dential aged care facility permanently: A systematic review.” JBI Database of Systematic Reviews & Implementation Reports 13 (7): 241–317. Kitwood, Tom. 1997. Dementia reconsidered: The person comes first. Open University Press. Knauss, Jenny and Don Moyer. 2006. “The role of advocacy in our adventure with Alzheimer’s.” Dementia 5 (1): 67–72. doi: 10.1177/1471301206059755 Levy, Neil. 2007. Neuroethics: Challenges for the 21st century. Cambridge University Press. McColgan, Gillian. 2004. “Images, constructs, theory and method: Including the narra­ tive of dementia.” In Dementia and social inclusion: Marginalised groups and marginalised areas of dementia research, care and practice, edited by Anthea Innes, Carole Archibald and Charlie Murphy, 169–183. Jessica Kingsley Publishers. McGowin, Diane Friel. 1993. Living in the labyrinth: A personal journey through the maze of Alzheimer’s. Dell Publishing. Medina, Raquel. 2018. Cinematic representations of Alzheimer’s disease. Palgrave Macmillan. Megarrity, David. 2020. The holidays. Playlab Theatre. Mills, Marie A. 1998. Narrative identity and dementia: A study of autobiographical memories and emotions. Ashgate. Nicholson, Helen. 2011. “Making home work: Theatre-making with older adults in residential care.” NJ: Drama Australia National Journal 35 (1): 47–62. doi: 10. 1080/14452294.2011.11649541 Osimani, Alicia and Morris Freedman. 1991. “Functional anatomy.” In Dementia and Communication, edited by Rosemary Lubinski, 22–36. B. C. Decker Incorporated. Otway, Fiona. 2015. “The unreliable narrator in documentary.” Journal of Film and Video 67 (3–4): 3–23. Rose, Larry. 1996. Show me the way to go home. Elder Books. Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing.

Dementia from the Inside 45 Shakespeare, William. c1606. King Lear. Sikes, Pat and Mel Hall. 2018. “‘It was then that I thought ‘whaat?’ This is not my Dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia.” Dementia 17 (2): 180–198. doi: 10.1177/147130121 6637204 Small, Jeff A. and JoAnn Perry. 2005. “Do you remember? How caregivers question their spouses who have Alzheimer’s disease and the impact on communication.” Journal of Speech, Language, and Hearing Research 48 (1): 125–136. Sterin, Gloria J. 2002. “Essay on a word: A lived experience of Alzheimer’s disease.” Dementia 1 (1): 7–10. doi: 10.1177/147130120200100103 Swaffer, Kate. 2016. What the hell happened to my brain? Living beyond dementia. Jessica Kingsley Publishers. Sweet, Jeffrey. 2013. “Unreliable narrator.” Dramatics 84 (7): 8–11. Todd, Bella. 2010. “Are we scared of seeing dementia on stage?” The Guardian, 25 May. https:// www.theguardian.com/stage/theatreblog/2010/may/24/alzheimers-theatre-lions-face Usita, Paula M., Ira E. Hyman, and Keith C. Herman. 1998. “Narrative intentions: Listening to life stories in Alzheimer’s disease.” Journal of Aging Studies 12 (2): 185–197. doi: 10.1016/S0890-4065(98)90014-7 Wilson, Melanie. 2012. Autobiographer. Oberon Books. Woodward, Kathleen. 2006. “Performing age, performing gender.” NWSA Journal 18 (1): 162–189. Zeller, Florian. 2015. The father: A tragic farce. Translated by Christopher Hampton. Dramatists Play Service.

Cited performances ‘A’: The Christmas Party (2008) by Becky Shaw (England) Absence (2011) by Peter M. Floyd (US) Also a Mirror (2011) by Sean Riley (Urban Myth Theatre Company) (Australia) Amadeus (1979) by Peter Shaffer (England) Ancient Mysteries (2011) by Charlie Higson and Paul Whitehouse after David Clegg (England) André y Dorine (2010) by Kulunka Teatro (Spain) Angeleta and Etelvina (2014) by Around the Glove (England) Arcadia (1993) by Tom Stoppard (England) Autobiographer (2011) by Melanie Wilson (England) Betrayal (1978) by Harold Pinter (England) Constellations (2012) by Nick Payne (England) Daisy (2011) by Terry Mervin (Australia) Death of a Salesman (1949) by Arthur Miller (US) Dot (2015) by Colman Domingo (US) King Lear (ca. 1606) by William Shakespeare (England) Krapp’s Last Tape (1958) by Samuel Beckett (Rep. of Ireland) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) Marjorie Prime (2015) by Jordan Harrison (US)

46 “We’re All in Our Own Little World” My Unseen Disappearing World (2012) by Kate Swaffer (Australia) Plaques and Tangles (2015) by Nicola Wilson (England) Sundowner (2011) by KAGE (Australia) The Height of the Storm (2018) by Florian Zeller, translated by Christopher Hampton (France/England) The Holidays (2020) by David Megarrity (Australia) The Humans (2014) by Stephen Karam (US) The Last Five Years (2002) by Jason Robert Brown (US) The Lion’s Face (2010) by Mahogany Opera Group (England) The Mother (2011) by Florian Zeller, translated by Christopher Hampton (France/ England) The Nature of Forgetting (2017) by Theatre Re (England) The Other Place (2011) by Sharr White (US) The Son (2018) by Florian Zeller, translated by Christopher Hampton (France/England)

2

Research-Based Performance Inside Out of Mind

Keeping this chapter concise and manageable in length has been difficult. A whole book could be dedicated to research-based theatre about dementia. To prevent this chapter from becoming overly long, I discuss one performance in depth, but in penning the introduction, I found it necessary to cover some important ground. Dementia-themed theatre has strong roots in research-based work and that comes with its own set of challenges and quandaries. I have attempted to cover the foundations. Research-based performance about dementia Translating research into performance is important, but finding a balance between information and humanity(see Batch 2024, forthcoming), between experiences of care partners and people living with dementia, and between the struggles and the joys in dementia, is difficult. As Ruth Bartlett writes, “art is a powerful medium for communicating research knowledge; it can mobilise emotion and action and enhance understanding of complex ideas” (2015, 766). However, Bartlett warns researchers to be mindful of what art is and is not capable of facilitating in research communication. Research-based projects constitute a significant part of dementia’s represen­ tation in theatre. Several key projects that emerged during the “boom” of dementia onstage and onwards have been pioneering in their efforts to include contributions from people with dementia. Research-based (to different extents) performances include Time Slips (2000), I’m Still Here (2006), Expressions of Personhood in Alzheimer’s (2006), ‘A’: The Christmas Party (2008), Don’t Forget to Remember Me (2009), Also a Mirror (2011), Autobiographer (2011), Sundowner (2011), Grandma Remember Me? (2012), Memory Point(s) (2012), D-Generation (2013), Inside Out of Mind (2013), Jack and Jill & The Red Postbox (2013), The Keys Are in the Margarine (2014), Cracked: New Light on Dementia (2014), and The Nature of Forgetting (2017). I specify “to different extents” to acknowledge the varying degrees to which research led the processes of creative development or was used to enhance the plays. DOI: 10.4324/9781003282037-4

48 “We’re All in Our Own Little World” Anne Basting, TimeSlips™, and Time Slips In a chapter about research-based performance, in a book about dementia in theatre, I would remiss not to begin with Anne Basting’s work. In the late 1990s, Basting developed TimeSlips™, a series of storytelling workshops for people with dementia (https://www.timeslips.org/). TimeSlips™ facilitators present stimulus images and ask open-ended questions to guide the sessions. TimeSlips™ does not rely on memory recall like some other storytelling activities, such as reminiscence therapy.1 “Time Slips [sic] storytelling workshops make a clear and simple distinction: rather than focus on who people with Alzheimer’s disease were, we are interested in who they are, complete with missing words, repeated sounds, and hazy memories” (Basting 2005, 204, emphasis added), thus emphasising “imagination, rather than fact-based memory” (Basting 2003, 25). The facilitators collate the responses, but the focus remains on the participants’ contributions. Basting herself reports that, beyond embracing the participants’ creative expression, TimeSlips™ also affects care staff because they “engage with [those in their care] as people rather than simply bodies in need” (2005, 204). Basting’s program has been used as a method to encourage the creativity of those living with dementia, as a method to improve medical students’ attitudes towards people with dementia (George et al. 2014), and a method to collect stories for performance outcomes, including D-Generation: An Exaltation of Larks (2013; discussed in Chapter 5) and Time Slips (2000). The eponymous Time Slips (2000) stages the stories created in workshops (Basting 2001). In brief, the first scene introduces the characters; the following scene plays out similarly, though props and costumes belonging to the characters move between characters without acknowledgement and confuse their intro­ duced identities. The third scene is another repeat and the pieces continue to circulate, only more quickly. Additionally, the “characters are losing language, and slide projections of sentences have fragmented into single words or letters” and this time, the characters express “frustration, but not confusion”; they understand what is happening, but “their surroundings […] betray them” (Basting 2005, 210). The next scene is the last and, by now, the characters struggle to express themselves at all: “Simple gestures are arduous and language is fragmented at best, garbled at worst. The characters turn to each other to evolve their stories” (Basting 2005, 220). So, instead of merely showcasing the stories created by people living with dementia, the play exhibits an accelerated linguistic decline. The performance-makers hoped to demonstrate how the characters are “betrayed” by their condition, as well as how the characters perform a kind of mutual support. Basting (2005) writes about the performance’s correlation to the TimeSlips™ workshops in both the struggle for self-expression and the mutual support of the group. However, this concept may have been lost in the play’s artistry, especially for those outside the contemporary theatre-going public. While the Time Slips performances were open to the public, the show was primarily marketed to “schools, the arts community, health care workers, and

Research-Based Performance 49 those concerned with Alzheimer’s and dementia from churches to support groups” (Basting 2005, 210). This suggests that the creators considered Time Slips an outreach tool and not simply a performance for the sake of the artform. This would come to be something of a hallmark for many research-based perform­ ances about dementia. In relation to the play’s progressively fragmented com­ position. Basting (2005) acknowledges that some audience members were confused and missed the central point: that the stories staged were written in collaboration with people with dementia. “Yet the majority of audience mem­ bers that spoke at postshow discussions clearly ‘got it’” (Basting 2005, 212): “it” being the humour “and power in the stories.” It is possible that well-versed, regular theatregoers may have “got” the non-traditional performance more quickly than lay audiences who were more interested in learning about dementia. Research-based work deployed for education Research-based performance outputs intended for education may be created by a team of artists and researchers working in collaboration (Inside Out of Mind; The Keys Are in the Margarine; Cracked: New Light on Dementia), they may be com­ missioned by researchers to be developed by artists (Brian Daniels’s Fighting for Life), or they may be developed by artists then picked up by an organisation to educate about dementia (Brian Daniels’s Don’t Leave Me Now and more recently The Keys Are in the Margarine by Brain Research New Zealand). Cracked: New Light on Dementia (2014) is a Canadian work led by research (Gray et al. 2017; Gray 2019). Sherry Dupuis, Gail Mitchell, Pia Kontos, and Christine Jonas-Simpson are prominent voices in dementia cultural studies. This research team collaborated with playwright and director Julia Gray alongside other creatives and performers to produce Cracked. Together, the team has published under the name Collective Disruption. The process began with a year of meetings between the researchers and playwright to identify key themes in the existing research. A series of focus groups followed that invited both people living with dementia and their care partners, then a community workshop that involved a people with dementia, care partners, artists, performers, and researchers. From there, the core research team, playwright, and performers developed the work. The play traverses the home en­ vironment, the meeting place of an advocacy group led by people with dementia, and a care facility. It touches on experiences of people with dementia without overlooking the difficulties of being a care partner and making the decision to access formal care. Cracked’s progenitor, I’m Still Here (2006),2 for which Mitchell and Jonas-Simpson collaborated with playwright Vrenia Ivonoffski, was also created with an outlook to redress misunderstandings of and stigma around dementia. Cracked has been showcased at various conferences, both academic and professional, as well as in various long-term care facilities across Canada. Collective Disruption cite “three main commitments to the play: research, pedagogical (or goals of per­ sonal and social change), and aesthetic” (2017, 69). That is, they wished for the play

50 “We’re All in Our Own Little World” to be captivating in order for their audience to reflect on their assumptions about dementia as an “unmitigated tragedy” “in both supportive and provoking ways” (Collective Disruption 2017, 67, 69). Each showing of Cracked includes an audience discussion so that they may share their own experiences. Where or When (Brian Daniels) is a play explicitly designed to facilitate audi­ ence discussion within the text. For example, one scene set in a hospital dem­ onstrates an interaction between a nurse, a woman with dementia, and her husband. At one point, the actor playing the husband pauses the scene and ad­ dresses the audience, asking them what could be improved in the interaction. The scene resumes, then there is another pause to check in with the audience: “Did we cover the points you made?” An actor explains the amendment to the audience: “When the nurse spoke to her as an equal my wife started to respond” (Daniels 2020, 5). These moments of pause happen several times, where a character “breaks the fourth wall”3 to give an explanation. The script includes the role of facilitator and provides them with a series of questions that could be posed or potential debates that may arise in the audience discussion. Playwright Brian Daniels offers that each of his three plays about dementia “can be per­ formed by Zoom and they are designed to be performed ‘script in hand’ with post-performance discussions” (Brian Daniels, 19 January 2022). Clearly these research-based performances with educative outcomes sit separate from works that play to regular theatregoers in more typical programming arrangements. Verbatim theatre Verbatim theatre is a type of documentary theatre4 where responses are gathered through interviews, surveys, or other modes and woven into a script to be de­ livered word for word. To name a few examples, The Keys Are in the Margarine (2014)5 uses interview responses from people with dementia and their families. ‘A’: The Christmas Party (2008) is a verbatim work based on interviews with a woman with dementia during visits to her care facility. Jack and Jill & The Red Postbox (2013)6 was inspired by real-life experiences taken from 89 interview transcripts, but only focuses on one family, husband and wife Jack and Jill and their children (using the family as microcosm, as discussed in Chapter 3). Also a Mirror (2011) by Urban Myth Theatre of Youth7 is a verbatim/scripted hybrid, borrowing from the verbatim approach while taking some creative licence. I suggest that verbatim scripting is employed to give voice to people living with dementia, that is, in the absence of people with dementia as creative drivers behind a performance. As co-creator of The Keys Are in the Margarine, Cindy Diver says the verbatim approach is a means to “tell truthful stories in a truthful manner” (quoted in Winkless 2019). Janet Gibson (2020)—namely in her chapter “‘I don’t want to disappear’: Dementia and public autobiographical performance”—writes more extensively about autobiographical work by people living with dementia. Chapter 8 of this book discusses an autobiographical work

Research-Based Performance 51 by Peggy Shaw following her stroke. Verbatim and other research-based efforts have produced some noteworthy antecedents to work presented by people living with dementia. Gibson (2020, 93–94) discusses the verbatim technique as part of the broader “theatre of the real” and poses whether verbatim can create solutions for or further complicate the trap of the “right kind” of dementia story. People with dementia experience substantial decline in their language capacities and struggle to remember, dependent, of course, on the type of dementia and its severity. [… B]oth these features impact their ability to tell a reliable life story, and thus claim social identity, particularly as worthy interview subjects. It was this tension between a form of theatre that relied on stories taken in interviews from real people and the idea that people with dementia are not seen as real or even people that prompted this study. Finding ‘pure’ verbatim theatre pieces based on interviews with people with dementia proved well-nigh impossible, for the reasons stated above. (Gibson 2020, 98) I observe these tensions in The Keys Are in the Margarine. It premiered in Dunedin, New Zealand in 2014, after six years in development. The work had a primary devising team comprising a general practitioner (GP in Australia and UK, or primary care physician in the US) Dr Susie Lawless and theatre-makers Cindy Diver and Stuart Young. The verbatim play is based on interviews with 17 people. Six actors, each with an mp3 player in their pocket and a bud in their ear, deliver lines verbatim as they hear them and adopt an individual voice for each interviewee they represent. To ensure the work’s rigour on various fronts, the show’s creators gathered “a Kaitiaki group, an advisory group of people who are experts in medical ethics, the legal issues of consent, spirituality at the end of life, Māori health and verbatim theatre” (Lawless in Dementia Daily 2015). Lawless adds that the project mandated “a three-stage consent process that involved gaining consent from the participants themselves, the collaborators, assent from their legal next-of-kin and an assessment from their doctor that they were able to understand what they were consenting to” (quoted in Dementia Daily 2015). Despite the measures taken to involve people with dementia, the play appears to be primarily focused on the caregiver journey. Accordingly, many reviews of the play are preoccupied with this perspective. As the NZ Herald describes, “The most compelling stories come from [… those] whose lives have been turned upside down when someone they love slowly disappears through loss of memory and degener­ ation of mental faculties” (2015). More pointedly, Ewan Coleman reports that while the stories of those with dementia describing the onset and gradual changes to their lives, such as not remembering things, is touching, but also sometimes funny, it is the effect on family members, especially partners, that comes out from this show the strongest. (Coleman 2015)

52 “We’re All in Our Own Little World” This case indicates that the use of verbatim scripting in the endeavour for authenticity may risk precluding the stories from people with dementia, albeit addressing the familial or spousal experience. This also highlights the precariousness of relying on spoken language to represent the experiences of characters with dementia whose linguistic capacity becomes diminished. The Keys Are in the Margarine rests on language and some characterisation from its actors. Thus, language has unlevelled dramaturgical power in the play, meaning that the authority that language carries is lent primarily to descriptions about the person with dementia instead of from them. Inside Out of Mind Meeting Ground Theatre Company’s Inside Out of Mind (2013)8 manages to tread this territory more carefully, drawing from the experiences of healthcare assistants in Nottingham, England, while using a range of theatrical signifiers to afford witness to the realities experienced by its characters with dementia. Playwright Tanya Myers was commissioned by Professor Justine Schneider9 to write Inside Out of Mind, to be produced by Meeting Ground Theatre Company. Myers was handed 600,000 words of ethnographic field notes from researchers who were posted in dementia care wards to observe both the residents and the work of the healthcare assistants (HCAs).10 The project was intended to raise awareness and as an educational tool for HCAs who work with people with dementia. The per­ formance was not envisioned for an audience of regular theatregoers, but of agedcare workers. Tom Kitwood and Kathleen Bredin (1992) argue that dementia care is greater than tending to physical and pharmacological needs. Writing in 1992, they recognised that person-centred care was undertaken by “outstanding practi­ tioners,” but that there lacked a theory or model of care that nurtured personhood (Kitwood and Bredin 1992, 269). This has since become a greater focus in the literature on formal care. This is what Inside Out of Mind (hereafter Inside Out) and others mentioned have sought to educate on, not physical or pharmacological care protocols, but person-centred care. The ethnographic source material produces a strong clinical discourse in the performance, both in its setting, a long-term dementia care facility, and its healthcare vernacular. Yet, the performance layers dialogue and the action of the ward with non-mimetic soundscape, projection, and movement to reveal the inner worlds being experienced by characters with dementia at parallel with the business of the ward. Meeting Ground (2013) describes the work’s style as “medical magical realism,” which aptly summarises the layering of the experiences of the ward’s residents over the ways the care staff experience dementia. In the world of healthcare workers The characters in Inside Out include an ethnographic researcher called Youth, seven patients with dementia, and ten staff. The staff are a mixture of HCAs and registered general nurses (RGNs), and a doctor who appears only for a short time.

Research-Based Performance 53 The patients vary slightly in age and in their type of dementia. The central resident, Mr P (Proust), is silent for most of the performance and is present onstage in most scenes. Other residents include Gertie, Muriel, Nancy, George, and Anna. Anna’s visiting husband, Tom, appears in several scenes and represents the play’s only spousal experience. In contrast to many dementia narratives that centre around a biological family, Inside Out instead creates a sense of a surrogate family among the staff and residents. Throughout the play, the HCAs and RGNs frequently use clinical terms pertaining to symptoms, behaviour, and medication. In one instance, RGN Grace describes Mr P’s “post frame behaviour” and discusses the provision of olanzapine and diazepam (Myers 2017, 19). Additionally, there are references to “person centred care” (Kitwood 1997), and “life storybooks.” A life storybook, or life book or life-story, the introduction to the script explains, is a “personal history book to help staff reference patients past & interest” (Myers 2017, 3). The books are related to person-centred care because they are designed to educate or remind the care staff about the likes, dislikes, and hobbies of the person with dementia and essentially inform their care. The staff also make colloquial refer­ ences to behaviours associated with dementia. HCA Keith remarks that one patient, Magda, is “Up with the owl! Down with the lark!” (Myers 2017, 21), referring to diurnal rhythm disturbances, or day-night reversal (Molloy and Lubinski 1991; Logsdon, Teri and McCurry 2006). Clinical markers of dementia are also evident in the language and behaviour of the residents on the ward. For example, Gertie demonstrates repetitive verbal behaviours, namely, echolalia: RGN PATRICIA: Oh Gertie. What a mess. GERTIE: What a mess RGN PATRICIA: Come on—Now let’s get you up and sorted. She places mirror in Gertie’s locker GERTIE:

What a mess! What a mess. (Myers 2017, 40)

Echolalia is the meaningless repetition of another person’s spoken words (Guendouzi and Müller 2006). Gertie’s first repetition of Patricia’s phrase is not immediately conspicuous as a clinical sign, but in her next line, the repetition is out of place and, therefore, flags her dementia. Gertie exhibits this mirroring behaviour in her language throughout the play. These linguistic aspects of the performance that contribute a clinical discourse are complemented by the setting and action onstage. The staff’s perpetual action about the stage occupies the ward. They routinely use hand sanitiser (something more specific to medical settings in a pre-COVID-19 world), intermittently don plastic aprons and gloves, carry medical charts, dispense medication from a hatch

54 “We’re All in Our Own Little World” upstage, wheel the residents around in their chairs, and serve tea and medication from a trolley. The physical set is designed to transform to indicate different rooms in the ward, for example, common areas, resident rooms, and a staff office.11 The lockers that constitute the room at stage left can become a bedroom when a bed is pulled out from the wall. The whiteboard at stage right becomes a window to the outside with the use of projection or a backlit window to an office in which staff talk privately, appearing to the audience in silhouette. These transitions and silhouetted scenes maintain the busyness of the ward, as does the action of the staff and residents. Nursing (un)homely homes as narrative settings Theatre about dementia tends to be set either in the family home or in a nursing home. (Some performances do break this mould, like Autobiographer or RUFF, which are placeless and It’s Dark Outside, which takes the audience on an out­ door journey.) Many dementia stories focus on the immediate family unit, and these are typically set in the family home, though the action may shift to a nursing home at some point in the story, or a formal care institution is alluded to being in the future, as a spectre. It is, of course, true that the move into a care home may produce feelings of loss (Brickell 2012). Along with the many met­ aphors that render dementia terrifying, institutionalised care for many represents a place of clinical captivity. In any case, the inclination towards these two pri­ mary settings—the family home and the nursing home—demonstrates the focus of most dementia stories: how care is altering family dynamics and dementia in formal healthcare systems, both liable to be accompanied by a theme of burden. Long-term care settings construct “home” in a particular way. Nursing homes—also referred to as care facilities, homes, dementia wards, and institutions—are on the limen between the domestic and the public. They are private in relation to the outside world, but also public because of the daily interaction among residents and between residents and care staff. Domestic activities take place there, yet they afford very little privacy, neither social nor physical, and even less agency, to their residents. Alison Blunt and Robyn Dowling (2006, 100) attribute several poignant dichotomies to nursing homes: homely and unhomely, belonging and alienation, attachment and detachment. Nicholson (2011) adds the dichotic sense of safety and fear potentially experi­ enced by people with dementia living in formal care. Christine Milligan recognises the transient connections made in institutionalised care. Within contemporary Dementia Care Units, residents often pass through a series of wings (or wards) as their condition deteriorates over time. Given the highly individualized experience of dementia, relationships formed with both staff and other residents within a wing can be relatively short-lived. (2003, 466)

Research-Based Performance 55 Dementia care facilities are relatively anonymous and can be meaningless to those who live in them (Augé cited in Milligan 2003, 466), and the transience of their occupancy compounds this notion of anonymity. The transformation of the stage throughout Inside Out almost alludes to this transitory nature of the setting. The transient relationships typical of nursing homes mean that staff may struggle to form meaningful connections with those in their care, not to mention the overwork experienced by HCAs (further discussed in Chapter 3). Thus, there is a need for workshops such as TimeSlips™ and projects such as Inside Out to hu­ manise people living with dementia and encourage healthcare workers to see their patients as more than “bodies in need” (Basting 2005, 204). Inside Out manages to avoid representations of the dementia ward as anony­ mous. The behaviour and routines of the care staff in the play establish a sense of community on the ward. The ward is often a very playful place, with practical joking and impromptu singing and dancing. Echoing Milligan’s (2003, 466) comments on the transience of care institutions, RGN Grace at one time describes the ward community as “one big transient dysfunctional family!” (Myers 2017, 33). The joking and dancing complement the regular commotion that happens on the ward. During a visit from Dr Dido, he remarks: “My, it’s Bedlam in here isn’t it! […] One can’t hear oneself think!” (Myers 2017, 55), making reference to the chaos of the ward but also alluding to London’s Bethlem Royal Hospital, home to the mentally ill from the 15th century. In such in­ stances, sound effects and voiceover add to the liveliness of the stage action. Intermittently, the unseen Magda is heard yelling in her native Greek from offstage. Often, an alarm triggers her shouts and the coinciding sound produces an experience of anarchy. When chaos does occur on the ward, the staff calls for tea to be made, estab­ lishing tea as a communal coping mechanism that is shared intermittently throughout the show, often following an alarm or an incident on the ward. On two occasions, RGN Patricia announces “Tea’s what we need” (Myers 2017, 24, 46). These moments give pause for the stressful nature of HCA work. The play also suggests that in order to manage their work, RGNs and HCAs must compart­ mentalise the jobs from their home lives. Familial care is recognised as being dis­ tinct from professional care. Patricia tells Youth, the ethnographer, about a colleague who is currently “‘home caring’ her own mother […]. Hands up to her. It’s one thing wiping someone’s backside in here, but your own mother. Ooh, I don’t think so, do you?” (Myers 2017, 23). Inside Out affords the audience witness to the staff’s experiences of dementia, care, and death, presented unambiguously in the play. RGN Grace describes her experience to the audience. (Note that the below passage is quoted verbatim from the unpublished script. In the recording I viewed, RGN Grace is played by a woman of colour. Myers’s decision to script RGN Grace’s dialogue in this way is perhaps a deliberate choice to comment on the number of migrant workers who hold positions as carers/HCAs.)12

56 “We’re All in Our Own Little World” I tink what does dis place look likes to an outsider, to a visitor, […] you’ve got people crawling on the floor, and you’ve got someone squatting in the corner doing a wee, you’ve got somebody trying to bash somebody with dis or dat and someone is exposing themselves … I know those things aren’t all happening at once, but perhaps they will get to see some of dose tings and they must be … horrified […] It’s normal to me. You see. Cos we’s institutionalized. We have to switch off. We’d go mad, if we dint. (Myers 2017, 33) Grace ponders aloud the everyday occurrence of taboo behaviours and their normalcy for the care staff. Her expression that the staff are “institutionalised” and at risk of “going mad” likens the staff to perceptions of those with dementia, breaking down some of the demarcation between carer and the cared for. A different kind of direct address is employed later in the performance when the performers can break character to speak to the audience. The script notes: “each actor can choose whether or not they wish to deliver a short personal experience or share facts drawn from current dementia research or nothing at all.” This scene reflects the research-based origins of the script and appeals to the intended audience of care workers. Despite this “irruption of the real” (Lehmann 2006), the ward stays busy in the background as each actor steps forward, layering experiences of reality. The sound of a steady heart rate monitor accompanies this sequence, after which we hear a flatline, signifying a death on the ward. Keith, Grace, and Youth are present to carry out a post-death routine. Keith is visibly upset by the death when he informs Youth. (upset) Nancy’s passed on … or whatever other euphemism you want to hit on; (he kicks the bucket) Hah, that’s a good one! Kicked the bucket! (Struggles to put on blue plastic gloves) We’re all so bloody timid aren’t we? Paddling in ‘palliative’ care … They call it ‘pathway to the end’ … Like its primulas and dahlias! She was never going to go anywhere else was she? (Myers 2017, 64–65) Like Grace’s monologue above, Keith cuts through the taboo and expresses his distaste for the euphemistic language pertaining to care, the aversion to talk frankly about the experiences therein. Later in the scene, Keith also tells Youth, “You know what they call this place? […] The ward with no name!” The sidestepping speaks to the impulse to veil dementia. Youth asks Keith, “How do you cope with …?” to which he replies, “We don’t ‘do’ coping here!” (Myers 2017, 65). The earlier compartmentalisation and “coping” with tea and dancing has dissolved. Grace deals with the death in her own way, with a routine. She opens the window to “let the spirits go out” (Myers 2017, 67) and talks to the deceased and tells them everything she does, washing their body and combing their hair. Even in death, Grace’s actions seek to humanise her patients. This scene not only reflects the ethnographic material and the experiences of the

Research-Based Performance 57 intended audience but also grants access to lay audience members to witness a normally private routine. In no other work analysed in this book (or any I have viewed or read) are the experiences of healthcare workers in such sharp focus, and in no other analysed performance is death staged so unambiguously (see Part 2 for example). Here, the experiences of carers (Grace and Keith) do not come at the expense of the characters with dementia’s humanity. Demarcation Because long-term care institutions are spaces “sometimes controlled by health professionals, as they care for the residents’ needs” (Blunt and Dowling 2006, 100), residents of care facilities may be at risk of being infantilised. Carers sometimes infantilise older people in care generally, and people with dementia in particular. In this context, infantilisation refers to behaviours performed by someone in an authority role who treats an adult as a child (Marson and Powell 2014). This can entail speech that is patronising in pitch, intonation, and vocabulary (Marson and Powell 2014). Some health professionals and care staff use infantilising speech, believing it to be “nurturing and supportive,” while “most elders view [it] as patronizing and disrespectful” (Marson and Powell 2014, 145). Alexa Andrew recognises that in the “new culture of care, which promotes a person-centered approach […], infantilization can be seen as inappropriate” (2006, 419). In any case, infantilisation is contentious as it assumes reduced selfhood. The staff in Inside Out do not use a “patronizing type of speech” as Marson and Powell (2014, 144) advise against, though a resident on the ward, Gertie, does carry a doll with her at all times during the performance. The use of dolls in dementia care is a point of contention in the literature on infantilisation (Andrew 2006). On the other hand, art therapy literature has shown the significance of dolls as therapy (Beard 2011). In the play, Keith makes a comment that contests infantilisation: (whispered) they’re not children … they’ve had lives. These guys fought wars, brought up kids, worked, and contributed all their lives. They deserve the best don’t they? Everyone’s someone’s gran or granddad? Aren’t they? (Myers 2017, 68) With this statement, Keith ennobles the residents by describing the lives they have led. He imbues these events with value that transcends their dementia. He also alludes to a generational discourse, placing worth on raising children and grandchildren. In other works, a generational discourse may be a device for demarcation (typically juxtaposing old and young). The physical absence of children and grandchildren from this play is notable. Many dementia narratives, both on and off the stage, centre on experiences of adult children. Demarcation can (1) position people with dementia at odds with those without, or (2) delineate between the person before and since dementia. Demarcation of the second type is often clear in dialogue. The first type may manifest in other

58 “We’re All in Our Own Little World” dramaturgical ways including visual demarcation (for example, puppetry, as ex­ plored in Chapter 5, or speaking juxtaposed with singing in The Lion’s Face). Within Inside Out, the residents and care staff are visually differentiated from each other with costume; the latter group wears uniforms. However, the Meeting Ground productions in 2013 and 2015 featured many actors in more than one role: the script suggests a doubling system where actors play both a resident of the ward and a carer. This metatheatrical element destabilises the demarcation between resident and carer and the power dynamic between carers and residents. There are several instances of demarcation in the dialogue, though not without some resistance to the idea. When Tom visits the ward to see his wife, he describes her saying “Anna loves … loved history,” making a delineation between her former self and current self, before and since dementia. However, later in this scene, Tom corrects HCA Brenda over a similar comment: HCA BRENDA: TOM:

You can tell she’s been a lovely lady. Is. Is a lovely lady.

Tom offers Anna a chair She sits gracefully. HCA BRENDA:

Yes. Of course. Is. Is a lovely lady. (Myers 2017, 16)

Even though Anna’s love of history is expressed as being in the past, her husband maintains at least that she is still lovely. It is worth mentioning that this con­ versation happens in Anna’s presence, though she is addressed in third person. Inside Out really does traverse wide territory, reflecting the joys and the dif­ ficulties of working in dementia care, and demonstrating person-centred care, as well as some of the mistakes that carers and care partners are likely to make. Myers’ development of the source material demonstrates the capacity of live performance, that is informed by experiences of care workers and designed for them, to re-humanise characters with dementia who have previously been dehumanised by the biomedical model. In the world of people with dementia The liveliness of ward lays a dramaturgical foundation for the residents’ individual experiences of reality staged via projection, sound, action, and alternative object relationality (Batch 2020). Inside Out, therefore, stages the interruption of the consensus of reality with various theatre technologies superimposed over the mimetic action of the work. The most striking element that disrupts the realism of the performance is a digital projection that is coordinated with the wallpaper and appears in blue and green (for example, see Figure 2.1). The projected pattern

Research-Based Performance 59

Figure 2.1 Inside Out of Mind. The image is a close-up photo of Mr P, played by Robin Bowerman. He is wearing striped pyjamas. He holds his hands out in front of his face in a cupped position and he is looking to his left. In the background, a student nurse in uniform (played by Lily Lowe Myers) carries a clipboard. Behind her, a hand sanitiser dispenser is attached to the back wall. The photo shows the digital image projected over the stage: neon blue strands of varying thicknesses spread over the whole stage. The strands resemble both overlapping tree branches and a network of neural circuits. Photo credit: Alan Fletcher, University of Nottingham.

60 “We’re All in Our Own Little World” evokes images of trees and branches as well as neurological circuitry. This parallels the popular imagery of trees and leaves in images analogising dementia; stock images of silhouetted human heads as trees shedding leaves are common illustrative interpretations of dementia used in lay media. The synaptic imagery also con­ tributes to the clinical layer of the work. Inside Out, for the most part, follows a day-in-the-life structure, but actually ad­ vances episodically by days, weeks, and months, while the chronological progression of a 24-hour day remains intact. The date projected onto the whiteboard and the illuminated digital clock denote this structure. However, in one scene, time is dis­ torted, indicated by “slow motion” action and the sound effect of clock strikes that repeat slowly to render time “indeterminate” (Myers 2017, 57). In this scene, Mr P moves in real time, indicating that his experience of reality is being staged in this moment. In this sequence, he is positioned as an anachronism, existing out of time. Mr P’s role in the performance is significant. He is one of the few characters whose actor does not double with another character. He is rarely absent from the stage. Mr P is silent for the entirety of the show, bar the opening 20 minutes and briefly at the end. If not for the opening sequence, it may be presumed that his dementia is too advanced to communicate or even comprehend or engage, that is, that he exists in his own world. The opening scene is the most abstract and establishes Mr P’s inner world. It is only in the following scene, when a nurse describes him as “our silent soul” (Myers 2017, 16) that the audience learns that what they witnessed was not a consensus of reality, but Mr P’s own experience of reality. For the performance, the actor playing Mr P is equipped with a headset microphone so that his breathing and humming may always be heard among the other action of the play. His presence is deliberately marked. With the knowledge of his rich inner world, the audience is less likely to disregard his presence onstage as mindless wandering. In the opening, Mr P is heard speaking English with French phrases: A Liberté! Here we are men assembled. (Whispered) Never lose sight of the person. No emotional displays. No irrational thinking. (Myers 2017, 7) These lines are delivered through voiceover. So it is unclear to the audience where or when Mr P is. His remarks are connected to a different time. As the staff later discuss, Mr P was part of La Résistance, during which his fiancée was killed. The war is a recurrent memory of Mr P’s that intrudes on the action of the ward on several occasions. His perceptible connection to another time exhibits retrograde amnesia. His past military experience surfaces again later in the per­ formance as he walks silently with an umbrella: Mr. P rises; white face, umbrella on shoulder, Primed for military patrol. Mr P marches downstage unsteadily. Youth moves George’s Bed - This action triggers a noise. As Youth turns to face him. In reflex- Mr. P aims umbrella at her as gun. Youth freezes. Sound: Loud crash of Thunder: Lightening. (Myers 2017, 45)

Research-Based Performance 61 He projects his own reality onto the consensus of reality and the umbrella becomes a weapon. This example also demonstrates how others—in this case, Youth—are cast in the layered reality. Despite his amnesia and appearance of ex­ isting out of time and place, Mr P’s language in the opening section also makes references to his dementia that demonstrate self-awareness. He makes mention of “a neuron-to-neuron nightmare” (Myers 2017, 7) and says, “They’re after my brain. Attention! Amyloid—beta 42” (Myers 2017, 10). Mr P’s understanding of amyloidbeta, a protein associated with Alzheimer’s disease, can be attributed to his past career as a neurologist. A rich soundscape supplements the voiceover. Sound is used throughout Inside Out to accommodate alternate experiences of reality. The opening soundscape, in particular, establishes a foundation for these layered realities: Sound score fills theatre from all directions: Subliminal crackles of fire, young woman sings a repeated refrain from Childhood Song ‘Allouette’, nightingale song, occasional refrains from Tchaikovsky—Swan Lake, Anna’s song—‘It’s alright with me’: Mixed with whisperings, fluttering of wings, a squeaky wheel—finally but not least, notes hummed by Mr P. (the Allouette motif) He hums same notes throughout the play. (Myers 2017, 6) The mix of sounds, particularly those that are not incidental to the ward, evokes a non-mimetic environment. Each of the musical motifs introduced in this opening feature throughout the work: Alouette, Swan Lake, and Cole Porter’s It’s Alright with Me are each associated with a particular character with dementia—Mr P, Muriel, and Anna, respectively—and are connected to a specific memory for each of them. Another resident, George, is reminded of I’ll be Seeing You (Fain and Kahal 1938). The memory is prompted by the taste of a biscuit: George chooses his favourite biscuit, takes a bite. All is calm. George looks up. Taste takes effect. Memory. GEORGE: Well I never. Ginger creams. We hear his Music: “I’ll be seeing you in all the old familiar places.” (Myers 2017, 62) In the linear and chronological structure, Mr P and the other residents are at risk of being positioned as anachronistic. However, the dramaturgy accommodates their recollections, affording them credence. The audience members are invited to witness the layered experiences of reality from the moment they enter the theatre (and as the opening sequence begins). The script instructs that the audience should enter the auditorium in a non-typical way, ideally via the stage. The nurses accompany this action by “attending to the audience and characters on stage” (Myers 2017, 6) as though they were patients or residents of the ward. This action—similar to the actors’ doubling in the performance—destabilises the demarcation between people with

62 “We’re All in Our Own Little World” and without dementia. It also immerses them in a non-mimetic dramaturgy before they even take their seat. The opening scenes then facilitate several alternate experiences that layer over the consensus of reality. Muriel is seen dancing Swan Lake wearing a swan half-mask. Gertie, too, is present and “equally preoccupied” (Myers 2017, 6). Mr P’s voiceover continues during this time as the business of stage begins to enact the routine of the ward: the nurses sanitise their hands and carry medical charts and a new patient arrives. Laid over this visual landscape, his voiceover becomes increasingly separate from the action, although brief snatches of Swan Lake and other samples continue to disrupt the consensus of reality. Mr P is eventually seen for the first time in a 1940s suit, carrying a pillowcase and covered in feathers. The sight of the feathers is one of the first demonstrations of the flight metaphor that features throughout the work. Both sound and imagery embody this meta­ phor. The auditory manifestations include the following: the sound of flapping, Swan Lake, Alouette (alouette being the French word for lark), and towards the end of the work the sound of bird wings that transforms into Ella Fitzgerald’s Skylark. The theme is displayed visually by the birds on the wallpaper of the ward and the image of branches in the digital projection. Additionally, in the abstract opening scenes, Anna is reading her life storybook when the following takes place: A draught catches pages of Anna’s book. […] Muriel and Gertie books flutter in their hands. The women rise, bravely facing the raging storm. Sound: Bird cries out in fierce complaint. Swan Lake refrain soars. Anna’s book lifts into the air, pages fluttering. Muriel exits dancing, book flutters like a fan. […] Behind a hospital screen; a book hovers like a butterfly, just beyond Mr P’s reach; he catches it; gently strokes the pages, holds it close to his heart. Flicker of recollection. Sound; storm calms (Myers 2017, 9) Then, when a member of staff snaps closed a hospital screen on the stage, the projected forest disappears and the flapping stops abruptly, reminding the audi­ ence of where these characters are and what the consensus of reality is. Mr. P’s interaction with the projection on the wall is significant. The script denotes that he has a “special patch” (Myers 2017) where a bird appears on both the wallpaper and in the digital projection. Sometimes the “illuminated bird flickers faintly” (Myers 2017, 36). Later in the performance more birds have

Research-Based Performance 63 become visible on the wall but “one bird [is] brighter than [the] others—perched in Mr P’s special patch of wallpaper” (Myers 2017, 57). The flight metaphor suggests a need to escape, to be free and/or independent. When Keith finds Mr P in the corridor, supposedly on his way out of the ward, Keith intercepts him, saying “Flown the coop have we matie?” (Myers 2017, 31). His turn of phrase subtly compares the ward to prison, though perhaps unwittingly. Towards the end of the performance, Mr P does leave the ward. As he does, there is the sound of bird flight and the projected birds, bar one, take off across the wallpaper. Eventually, Mr P returns of his own volition with a bouquet of flowers that he offers to Youth. His return resists the idea that the ward is a place from which to escape, implying that the flight metaphor instead represents a level of agency. In this event, the central connotation of the play is reiterated: the residents’ speech and behaviour—while it may appear incongruous—is compatible with their sense of reality, their inner world (Sabat 2001). Inside Out does a lot to represent the inner worlds—the individual experiences of reality—of the residents. However, what it does neglect along the way, perhaps because of its focus on carer–resident relationships, are the friendships that can form among residents of nursing homes. Of course, dementia impairs language, which tends to problematise social interaction. It may be the pre­ sumptions this carries that have led to so little research on the friendships among residents in long-term dementia care. In a study by Saunders et al. (2011), their participants showed that: conversational interactions are evidence of how these individuals construct their own social identities and, in so doing, their social relationships. Using language, these individuals align themselves with each other to form social bonds at the conversational level. At the same time, using language in their daily conversa­ tions, they indexically construct social meaning and social relationships with their table-mates. The individuals observed herein are very capable of forming and maintaining friendships, or pleasant social relationships despite their cognitive or physical impairments. (Saunders et al. 2011, 357–358) Inside Out of Mind’s several objectives Inside Out stages a clinical environment and narrative but effectively layers alternate points of view over the consensus of reality. Its focus on the ex­ periences of professional care workers is divergent from the strong tendency to stage family-centric dementia narratives. The candid perspectives of healthcare workers are given credence, including their thoughts on the re­ sidents and on the healthcare system. By showing the audience both the HCAs’ world and pieces of the individual realities of the ward’s residents, Inside Out can honour both the difficulties of the ward as a workplace, as well as elicit some empathy for the people with dementia and their

64 “We’re All in Our Own Little World” experiences of reality. The character doubling is arguably a strategy for eco­ nomical theatre-making, but it has a deeper diegetic resonance: anyone of us could one day be diagnosed with dementia. In line with the scope of this book, I have primarily discussed Inside Out in terms of themes and dramaturgy. This work faced a challenge in that it was not designed for an audience of regular theatregoers, but instead aimed specifically towards aged-care workers. This context could arguably hold back a playwright and creative team from playing with the broad representative palette that Inside Out does. To circle back to the context at the top of this chapter, research-based performances seek to be both aesthetic and engaging, and able to be deployed for awareness raising and education. According to Schneider et al., “[c]onventional research outputs failed to engage the healthcare assistants themselves, so we turned to theatre to remedy this” (2014, 61). However, educative dramas about dementia have not yet been proven to produce long-lasting effects, that is to ask, do audiences make lasting changes in how they consider and treat people living with dementia who may be in their care? Many researchers find benefit in their projects. Eva Gjengedal et al. (2014, 2018) examine the impact of a researchbased theatre performance on family members. Their phenomenological study found that focus groups of healthcare providers and family members gained new knowledge from the play, Our Wonderful World (Gjengedal et al. 2018). Similarly, Burns et al. (2018) suggest that “self-revelatory” theatre13 could cause a shift in the public’s perceptions of dementia. However, during a follow-up evaluation of Inside Out, Argyle and Schneider found that—while the audiences responded positively to the show both immediately following the performance and at the time of the follow-up—“their practice had not changed as a result of event attendance” (2016, 102). This echoes Zeilig et al.’s (2014) observation about Ladder to the Moon (see Guzmán et al. (2017) and Greenwood’s (2015) small study of a drama-based educational program). Essentially, despite the interest in arts/care projects, the knowledge is not necessarily being implemented in practice. Inside Out ticks boxes in terms of clinical accuracy and a humanising narrativisation, and yet the care staff did not alter their approach to their work. Though the project is due congratulations for its humanising representation of people with dementia and care workers, it was not ultimately successful in its endeavour to transform care practices. Notes 1 For some time, reminiscence therapy was a popular applied arts mode for working with older people including people with dementia. Since then, many have recognised some inherent issues: (1) that people with dementia who struggle with memory recall may be unable or uncomfortable participating, feeling as though set up for failure, and (2) that reminiscence therapy implies that people with dementia and older people cannot be creative, original storytellers.

Research-Based Performance 65 2 I’m Still Here was “informed by research conducted with persons living with dementia during the early and later parts of the journey, as well as with daughters whose mothers were diagnosed with Alzheimer’s Disease” (I’m Still Here n.d.). See Mitchell, JonasSimpson, and Ivonoffski (2006). 3 “Breaking the fourth wall” is a term most familiar to theatre and film scholars that refers to breaching the perceived boundary between the action onstage and the audience. The fourth wall is therefore “broken” when an actor acknowledges the audience directly. 4 For a more comprehensive discussion of documentary theatre, on the continuum of theatre of the real ( Wake 2010), see “Chapter 4: Staging the ‘Reality’ of Dementia” in Janet Gibson’s Dementia, Narrative and Performance: Staging Reality, Reimagining Identities (2020, 97). 5 To create the latter, artist Becky Shaw visited “A” daily for ten weeks and transcribed their conversations into a six-act play, which, in collaboration with Forced Entertainment’s Terry O’Connor, became the performance ‘A’: The Christmas Party, a six-hour durational work that is presented without the performers seeing the script beforehand. It was first broadcast as a radio play in 2008. 6 Claire Webster Saaremets created Jack and Jill & The Red Postbox with her company Skimstone Arts, and worked with researchers Charlotte Clarke, Cathy Bailey, and Catherine Gibb. The work incorporates multimedia, projection, original music, and physical theatre performance. (Webster Saaremets has also performed a solo version of the show and the story was subsequently produced as a short film [available at https:// vimeo.com/149265276].) Jack and Jill has been staged in a range of contexts, from typical theatre settings including the 2013 Edinburgh Festival, to industry settings including a Dementia Awareness Week event and Scotland NHS Health Board Training Day. 7 Interestingly, the cast of this play were themselves aged only in their mid-teens to early 20s. For the radio play adaptation produced the following year, the young cast were accompanied by a group of older actors who lent their voices to the play. 8 My analysis is based on both the written script and a video recording of the play. 9 The commissioning researcher Dr Justine Schneider from the University of Nottingham had worked as a care assistant in her 20s and sought a grant from the National Institute for Health Research in the UK for the development of the work. The team of ethno­ graphers spent six months working in a nursing home to compile the foundation for the script. Additionally, once a written script had been developed, two ethnographers came into the rehearsal space to inform the development of the performance. See Justine Schneider et al. (2014) for a report on the process of “development from page to stage” and Schneider (2017) for a report on audience impact. 10 See Speechley et al. (2015) for a similar Canadian project developing a script for a short film, Advocating for Hilda, from ethnographic field notes. See also Kontos and Naglie (2006, 2007) for a similar ethnographic and pedagogical approach. 11 See photos and video available at http://www.meetinggroundtheatrecompany.co.uk/ inside-out-of-mind-2015 for reference. 12 Gibson has similarly interpreted an aspect of Missing the Bus to David Jones: “As I see it, the choice of Berry [Australian actor Valerie Berry of Filipino descent] to be the first care attendant the audience sees is a salient comment on care of the ageing, both in Australia and around the Western world. Care homes are often staffed by migrants, working in various roles, as formal qualifications or training in nursing are not required for the majority of jobs in these facilities. Some of these migrants may have formal qualifications in their countries of origin, across a wide gamut of professions, but they are unable to get official recognition of their previous training, occasioning them to

66 “We’re All in Our Own Little World” take whatever job/s they can, often with poor pay. Moreover, Berry is female, another choice that I take to deliberately reflect the intersection between the female gender, caregiving roles, and low pay, which is still the reality for female workers on the whole” ( 2020, 138). 13 As Burns et al. describe, “‘Self-revelatory performance’ is a drama therapy model in which experimental problem solving and creative processes intersect to emotionally affect all involved, including both performers and audience members. The ultimate goal of self-revelatory performance is to communicate current, personal life issues from actor to audience in a mutually transformative process” ( 2018, 458).

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Research-Based Performance 67 Dementia Daily. 2015. “The keys are in the Margarine – A verbatim play about dementia explained.” Accessed January 3, 2018. https://www.dementiadaily.org.au/the-keysare-in-the-margarine-a-verbatim-play-about-dementia-explained/ George, Daniel R., Heather L. Stuckey and Megan M. Whitehead. 2014. “How a creative storytelling intervention can improve medical student attitude towards persons with dementia: A mixed methods study.” Dementia 13(3): 318–329. doi: 10.1177/1471301212468732. Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Gjengedal, Eva, Else Lykkeslet, Jan Inge Sørbø, and Wigdis Helen Sæther. 2014. “‘Brightness in dark places’: Theatre as an arena for communicating life with dementia.” Dementia 13 (5): 598–612. doi: 10.1177/1471301213480157 Gjengedal, Eva, Else Lykkeslet, Wigdis Helen Sæther, and Jan Inge Sørbø. 2018. “‘Theatre as an eye-opener’: How theatre may contribute to knowledge about living close to persons with dementia.” Dementia 17(4): 439–451. doi: 10.1177/1471301216647890 Gray, Julia. 2019. “Working within an aesthetic of relationality: Theoretical considera­ tions of embodiment, imagination and foolishness as part of theatre making about dementia.” Research in Drama Education: The Journal of Applied Theatre and Performance 24 (1): 6–22. doi: 10.1080/13569783.2018.1535270 Gray, Julia, Pia Kontos, Sherry Dupuis, Gail Mitchell, and Christine Jonas-Simpson. 2017. “Dementia (re)performed: Interrogating tensions between relational engagement and regulatory policies in care Homes through theatre.” In Care home stories, edited by Sally Chivers and Ulla Kriebernegg, 111–126. Transcript Verlag. Greenwood, Dennis. 2015. “Using a drama-based education programme to develop a ‘relational’ approach to care for those working with people living with dementia.” Research in Drama Education: The Journal of Applied Theatre and Performance 20 (2): 225–236. doi: 10.1080/13569783.2015.1019444 Guendouzi, Jacqueline and Nicole Müller. 2006. Approaches to discourse in dementia. Lawrence Erlbaum Associates. Guzmán, Azucena, Jennifer Wenborn, Tom Swinson, and Martin Orrell. 2017. “Evaluation of the ‘Ladder to the moon, culture change studio engagement pro­ gramme’ staff training: Two quasi-experimental case studies.” International Journal of Older People Nursing 12 (3): e12147–e12147. doi: 10.1111/opn.12147 Kitwood, Tom and Kathleen Bredin. 1992. “Towards a theory of dementia care: Personhood and well-being.” Ageing & Society 12 (3): 269–287. doi: 10.1017/S0144 686X0000502X Kitwood, Tom. 1997. Dementia reconsidered: The person comes first. Open University Press. Kontos, Pia C. and Gary Naglie. 2006. “Expressions of personhood in Alzheimer’s: Moving from ethnographic text to performing ethnography.” Qualitative Research 6 (3): 301–317. Kontos, Pia C. and Gary Naglie. 2007. “Expressions of personhood in Alzheimer’s dis­ ease: An evaluation of research-based theatre as a pedagogical tool.” Qualitative Health Research 17 (6): 799–811. doi: 10.1177/1049732307302838 Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge. Logsdon, Rebecca G., Linda Teri, and Sue M. McCurry. 2006. “Non-pharmacological treatment of severe dementia: The Seattle protocols.” In Severe dementia, edited by Alistair Burns and Bengt Winblad, 177–183. Wiley & Sons.

68 “We’re All in Our Own Little World” Marson, Stephen M. and Rasby M. Powell. 2014. “Goffman and the infantilization of elderly persons: A theory in development.” Journal of Sociology & Social Welfare 41 (4): 143–158. Meeting Ground Theatre Company. 2013. “Inside Out of Mind (2013).” Accessed February 12, 2018. http://www.meetinggroundtheatrecompany.co.uk/projects/insideout-of-mind Milligan, Christine. 2003. “Location or dis-location? Towards a conceptualization of people and place in the care-giving experience.” Social & Cultural Geography 4 (4): 455–470. doi: 10.1080/1464936032000137902 Mitchell, Gail J., Christine Jonas-Simpson, and Vrenia Ivonoffski. 2006. “Research-based theatre: The making of I’m Still Here!” Nursing Science Quarterly 19 (3):198–206. doi: 10. 1177/0894318406289878 Molloy, D. William and Rosemary Lubinski. 1991. “Dementia: Impact and clinical perspectives.” In Dementia and communication, edited by Rosemary Lubinski, 2–21. B.C. Decker Incorporated. Myers, Tanya. 2017. Inside out of mind. Unpublished script. Nicholson, Helen. 2011. “Making home work: Theatre-making with older adults in residential care.” NJ: Drama Australia National Journal 35 (1): 47–62. doi: 10.1 080/14452294.2011.11649541 NZ Herald. 2015. “Theatre review: The keys are in the Margarine, Aotea Centre Theatre.” Last modified August 24, 2015. http://www.nzherald.co.nz/entertainment/ news/article.cfm?c_id=1501119&objectid=11501686 Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Saunders, Pamela A., Kate de Medeiros, Patrick Doyle, and Amanda Mosby. 2011. “The discourse of friendship: Mediators of communication among dementia residents in long-term care.” Dementia 11 (3): 347–361. doi: 10.1177/1471301211421187 Schneider, Justine. 2017. “Evaluation of the impact on audiences of Inside Out of Mind, research-based theatre for dementia carers.” Arts & Health 9 (3): 238–250. doi: 10.1 080/17533015.2016.1251475 Schneider, Justine, Stephen Lowe, Tanya Myers, Kezia Scales, Simon Bailey, and Joanne Middleton. 2014. “A short report on knowledge exchange through research-based theatre: ‘Inside out of mind’.” Social Science & Medicine 118: 61–65. doi: 10.1016/ j.socscimed.2014.07.049 Speechley, Mark, Ryan T. DeForge, Catherine Ward-Griffin, Nicole M. Marlatt, and Iris Gutmanis. 2015. “Creating an ethnodrama to catalyze dialogue in home-based dementia care.” Qualitative Health Research 25 (11): 1551–1559. doi: 10.1177/104 9732315609572 Wake, Caroline. 2010. Verbatim: Staging memory and community. Currency Press. Winkless, Laurie. 2019. “Bringing memory loss to life through theatre.” The Spin Off, 10 October. https://thespinoff.co.nz/science/10-10-2019/bringing-memory-loss-to-lifethrough-theatre Zeilig, Hannah, John Killick, and Chris Fox. 2014. “The participative arts for people living with a dementia: A critical review.” International Journal of Ageing and Later Life 9 (1): 7–34. doi: 10.3384/ijal.1652-8670.14238

Research-Based Performance 69 Cited performances ‘A’: The Christmas Party (2008) by Becky Shaw (England) Also a Mirror (2011) by Sean Riley (Urban Myth Theatre Company) (Australia) Autobiographer (2011) by Melanie Wilson (England) Cracked: New Light on Dementia (2014) by Julia Gray (Collective Disruption) (Canada) D-Generation: An Exaltation of Larks (2013) by Sandglass Theater (US) Don’t Forget To Remember Me (2009) by Haresh Sharma (The Necessary Stage) (Singapore) Don’t Leave Me Now (2014) by Brian Daniels (England) Expressions of Personhood in Alzheimer’s (2006) by Pia C Kontos & Gary Naglie (Canada) Fighting for Life (2017) by Brian Daniels (England) Grandma Remember Me? (2012) by Belinda Lazenby (England) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia) I’m Still Here (2006) by Vrenia Ivonoffski with Gail Mitchell, Renate Krakauer, and Christine Jonas-Simpson (Canada) Jack and Jill & The Red Postbox (2013) by Claire Webster Saaremets (Skimstone Arts) (England) Memory Point(s) (2012) by Platform 4 (England) Missing the Bus to David Jones (2009) by Theatre Kantanka (Australia) Our Wonderful World (2013) by Giacomo Ravicchio (Norway) RUFF (2012) by Peggy Shaw and Lois Weaver (Split Britches) (US) Sundowner (2011) by KAGE (Australia) The Nature of Forgetting (2017) by Theatre Re (England) The Keys are in the Margarine (2014) by Cindy Diver, Susie Lawless, and Stuart Young (New Zealand) Time Slips (2000) by Anne Basting (US) Where or When (2021) by Brian Daniels (England)

3

Social Narratives and the Family as Microcosm Really Old, Like Forty Five

“If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting resources of the National Health Service.” (Mary Warnock quoted in Johnstone 2013, 3)

Baroness Mary Warnock was well known in the UK for her unwavering views on euthanasia in the context of dementia. She also “told the BBC she believed there were many who ‘sank into dementia when they would very much prefer to die’” (BBC News 2008). The philosopher Dennis Cooley makes similar arguments by applying the Kantian paradigm that “those who will lose their moral identity as moral agents have an obligation to themselves to end their physical lives prior to losing their dignity as persons” (2007, 37). He asserts that the suicide of a person with dementia is both moral and ethical because they are eventually robbed of their “moral life” (Cooley 2007, 41). Suicide here represents choosing the moral over the physical. Cooley (2007) positions his provocation as a promotion for the greater good, arguing that people with dementia are a burden to society. While others may promote the right to die, Cooley and Baroness Warnock describe a duty to die to mitigate social burden. Whether an individually or socially (and economically) motivated argument, the perceived loss of self as a result of dementia is put forward as a line of reasoning for the legalisation of euthanasia, or physician-assisted suicide. Johnstone (2013) examines the “Alzheimerisation” of the euthanasia debate: the way in which both sides of the debate have been coloured by representations of, and discussions about, Alzheimer’s. While Johnstone’s book Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society (2013) takes neither a pro- nor anti-euthanasia stance, she reports on the “use and misuse of Alzheimer’s disease in public policy debate on the legalization of euthanasia” (Johnstone 2013, 6), noting how metaphorical and emotional illustrations of dementia have clouded the debate. Many discussions associated with dementia can be and have been politicised, including but not limited to: assisted dying (euthanasia) and notions of social and DOI: 10.4324/9781003282037-5

Social Narratives and the Family as Microcosm 71 family burden; the economic cost of dementia for families and governments; the capacity of those with dementia to make medical, financial, and personal decisions; and who is responsible for caring. Even the idea of an individual’s loss of self has political angles to it. The play in focus in this chapter, Really Old, Like Forty Five, features several of these themes. Michael Billington’s (2010) review of the play announces: Newspaper articles and TV shows have seized on the growing imbalance of the UK population, and the fact that there are 10 million of us over 65. But Tamsin Oglesby is one of the first to confront the situation theatrically. Other plays that feature a socio-political narrative are François Archambault’s Tu te Souviendras de Moi (You Will Remember Me) (2014, Canada), Brian Daniels’s Don’t Leave Me Now (2014, England), and Stella Feehily’s This May Hurt a Bit (2014, England). In Tu te Souviendras de Moi, Edouard is in the early-to-moderate stages of dementia. He gets passed along between family members as each one needs a break, is too busy, or gets fed up (including his wife Madeleine, daughter Isabelle, Isabelle’s boyfriend Patrick, and Patrick’s daughter Berenice). Ultimately, Edouard’s dementia is an analogy for the “disappearance” of the Québécois culture and intellectualism, a lamentation of the modern condition. This social commentary is particular to Canada, but the play ends with a broader comment on assisted suicide. A notebook entry by Edouard reads: This disappearance, my own, is much too slow. It would be better to go all at once. Dive into death and be done with it. But who could help me? Who could give me that final push I need to end my existence? What about you, Berenice? Would you have the courage? (Archambault 2016, 120) But when Berenice reads this to him and asks how he feels now, he answers: I don’t know … All I can say is that now, right at this moment, I’m with you and, I have to admit, I’m not sure I know who you are … I’d like you to be my daughter, but I know very well you aren’t … but, also, what I’m feeling is that I don’t want this to stop. (Archambault 2016, 121) The second passage troubles the assumption that people with dementia wish for assisted dying simply because they have dementia. Tu te Souviendras de Moi does not deliver as explicit a commentary on society’s treatment of people with dementia and dementia as a condition as other plays, but instead a comparison of an individual’s dementia to the modern condition of information overload and our collective difficulty with information retention.

72 “We’re All in Our Own Little World” Brian Daniels was inspired to write Don’t Leave Me Now when his friend’s long-term partner developed younger-onset dementia. The play deals with the decision to move from at-home care performed by family into formal care, a transition that can be misunderstood and stigmatised. In one scene, one care partner says to another, “I gather you’ve put her into care. Nice and convenient for you” (Daniels 2015, 34). Don’t Leave Me Now is not noticeably political in its narrativisation of dementia. However, it has “been filmed by Birmingham NHS Trust to help educate around the complexities of the Mental Capacity Act” (https://dontleavemenow.com/). It has, therefore, been deployed as an educational piece, though it is not structured in the way that his other play Where or When is, which incorporates audience discussion between scenes. Daniels’s third play about dementia, Fighting for Life, was commissioned by Helen Findlay, one of the authors of the Findlay Report (2005). The Findlay Report was compiled by the Findlay family following the death of James Findlay, in response to the difficulties and frustrations of navigating health care on behalf of a loved one, namely the lack of communication between different specialists and healthcare providers. The Findlay family helped advise on the development of the play. Fighting for Life, in Daniels’s own words, “touches on dementia but is largely about older people and the challenges in the UK of getting combined health and social care” (Personal communication, 19 January 2022). This play illustrates the difficulties and frustrations described by Elizabeth Peel and Rosie Harding (2014) that care partners face in trying to navigate formal healthcare for their loved one with dementia. Inside Out of Mind, discussed in Chapter 2, also broaches the socio-political angle, via the character HCA Keith, from within the care system: don’t you just hate all this shitty politician crap about patients being clients? They haven’t ‘chosen’ to come here, have they? […] We don’t know where else to put ’em. Families can’t cope. There’s no strategy. What would the likes of her ‘do’ without the likes of us ‘do-ing’? Eh? The bum wipers, the Cinderella Service! We just get so much shit in this job – not so cute arse end of the Health Service! […] Keith reflects on the unpreparedness of the health service to deliver care to the ageing population effectively. Stella Feehily’s This May Hurt a Bit (2014) also makes commentary on the UK’s National Health Service, and is “set in a dysfunctional charnel house which calls itself a ‘hospital’” (Evans 2014). The play does not centre around dementia, though several scenes are set in a geriatric ward. One character comments, “We don’t do that [MRIs] for the elderly. Too expensive” (Feehily 2014, 57). Regarding the private hospital that a character’s daughter wants her to get into, the woman says, “You must be joking. They’ll charge me through the roof for scans and ECGs and will end up sending me back to the NHS because I’m too bloody old and banjaxed” (Feehily 2014, 69). In one

Social Narratives and the Family as Microcosm 73 scathing scene, the Prime Minister brainstorms with a senior civil servant about how they will explain a reorganisation of the NHS to the public: PM: MILES:

I’ll bring out the ‘Ageing population – a drain on our NHS’ line. Always works a treat. Blame the elderly. Very good, Prime Minister. (Feehily 2014, 11)

In the published text, the epilogue following the play is an extract from NHS SOS: How the NHS Was Betrayed – And How We Can Save It by Jacky Davis and Ray Tallis. This extract is the essential thrust of the play. The epilogue is in turn followed by a list of websites of national campaigns and allied organisations, as well as suggested reading and viewing on the subject. Feehily’s approach is explicitly political, reminiscent of Caryl Churchill’s and Bertolt Brecht’s socially engaged style; there are lots of direct addresses to the audience, plus characters (including historical figures) interrupting from the audience. The show educates an audience, providing explanations for key ideas, political figures, and legislative milestones along the way (especially helpful for a reader such as myself, who is not from the UK). To weave together these pedagogical moments, This May Hurt a Bit follows the James family through their various interactions with the UK public health care system. The family scenes include a spirited debate about the value of the NHS, with all the politics attached. The adult daughter now lives in New York with her American husband. The couple represents the arguments to move the NHS towards privatisation. So, their conversation includes comparison between the US and UK healthcare systems. I will not go into explanation here as there is no scope to describe the differences with any nuance and, being an Australian whose health system more closely resembles the UK’s, I cannot be unbiased. So, interspersed with the political commentary (PMs discussing their campaigns behind closed doors, the ensemble taking on a collective role as the board of directors of a hospital, conversations between Aneurin Bevan and Winston Churchill), the James family gives the audience a view into the day-to-day operations of the NHS—the waiting times, the computer system breaking down, and, perhaps most of all, the overworked staff. It is the socio-political aspect of dementia and the ageing population seen at a personal, family level. The prevalence of the dementia family drama Of course, dementia (and the ageing population more broadly) is a socio-political concern and an economic one. But, like any “wicked problem,”1 it is ultimately individuals who are affected, and their families who often become care partners and may become legally and financially responsible for someone as dementia advances.

74 “We’re All in Our Own Little World” Plays about dementia cannot only be about economies or politics. Plays are about people and, in the case of dementia plays, they are most often about families, whether it is a biological family or an incidental family that forms on a ward. Across the breadth of dementia-themed performance, the family drama is an oft-favoured frame for staging dementia narratives. Common themes therein include: relationships among immediate family members, burden, institutionalisation, and the medical narrative of decline. The family plot is also an effective vehicle to demonstrate the symptomology and its effects on relatives. Barbara Purves and Joann Perry (2009, 172) argue that a diagnosis of dementia disrupts the balance of family interrelationships. Along with the communicative difficulties, behavioural and personality changes, and memory loss, relationship changes can result from parent–child role reversals and unbalanced spousal relationships that may occur when a family member is engaged as the primary care partner (Rau 1991; Zimmermann 2013; Peel 2016). Peel’s research has uncovered adult children’s “interactions with parents with dementia that fracture and reconfigure normative familial relationships” (2016, 198). Yet, Jiska CohenMansfield, Hava Golander, and Giyorah Arnheim (2000, 381) report that, while a person with dementia’s social roles change with disease progression, familyrelated roles are the most well-maintained. Still, care partner relationships are often described in relation to burden. Accounts of carers as “hidden patients” or “hidden victims” (Rau 1991, 152) dominate discussions about caregiving. Such emotive descriptions fail to provide appropriate context or differentiation between the varying experiences of dementia (Innes 2009; Bastawrous 2013). Narratives that take up this perspective can decentralise or deprioritise the individual with dementia, whether they are positioned at the centre of the drama or not. Really Old, Like Forty Five Tamsin Oglesby’s Really Old, Like Forty Five (2010) was first staged by London’s National Theatre, directed by Anna Mackmin.2 The play comprises a linear narrative with traditionally dramatic characters. Nevertheless, its dystopian series of events disrupts its realism, creating a diegesis in which contentious views about ageing, dementia, and the greater good may be entertained. Oglesby’s play could be described as “speculative fiction,” depending from whose definition you draw. While the work is not science fiction, Robert Anson Heinlein (who is largely credited with coining the term) explains speculative fiction as: the story of people dealing with contemporary science or technology. We do not ordinarily mean this sort of story when we say “science fiction”; what we do mean is the speculative story, the story embodying the notion “just suppose–” or “What would happen if–.” In the speculative science fiction

Social Narratives and the Family as Microcosm 75 story accepted science and established fiefs are extrapolated to produce a new situation, a new framework for human action. (Heinlein 1991, 9) Really Old, Like Forty Five does draw in this way from existing attitudes about the ageing population and people with dementia, as well as emerging technologies in the care sector. It exaggerates certain details to achieve a dark satire, and the people in the story are forced to navigate the resulting situations. In the play, the public and political view of older people (in this case, anyone who is retired) and people with dementia are pushed to the point of absurdity, guided by satirically callous speeches and legislation. The story centres on a family and the work of several government employees. The family consists of Lyn, who develops dementia during the play, her sister Alice, brother Robbie, daughter Cathy, grand-nephew Dylan, and an unofficially adopted granddaughter, Millie. The three characters involved in government and policy include Monroe (the boss), Amanda, and Mike. Finally, there is a robot nurse called Mimi. Through these characters, both familial and political discourses are established. Really Old, Like Forty Five collapses these “worlds” into one where societal, political, pharmacological, familial, and personal narratives of dementia intersect. Political medicine Oglesby credits Jonathan Swift’s A Modest Proposal (1729) as inspiration for the play’s political landscape (Oglesby 2010a). Swift’s satirical article proposes that, in order to ease the burden on the country of impoverished families in Ireland, a number of children from poor families should be sold to the wealthy as a delicacy to eat. This way, their families earn additional income and save the money they would spend on raising their children from 12 months onwards. The 280-year interval between Swift’s and Oglesby’s takes can speak for the shift in the demographic in question—from the poor to older people—but the focus on burden and social benefit, as well as the satirical and absurd extent of the plans, are comparable. The resemblance to Swift’s proposal is most apparent in the second scene of the play, where Monroe delivers a speech about a new plan to manage the ageing population. From the opening paragraph, Monroe’s language projects a gamut of negative feelings about older people onto the general population. Some may resonate, but the opening of his speech is mostly comical because of its exaggerated ideas spoken in earnest. Monroe cites the Alzheimer’s disease “epidemic,” explaining that while many diseases now have cures, society is “haunted, eluded, by those of a neurodegenerative nature” (Oglesby 2010b, 17). His plan is to put over60s to work, to become unofficial adoptive grandparents of under-16s, whose parents work or are separated, in order to “diffuse both these demographic timebombs” (Oglesby 2010b, 17). Monroe’s use of language is significant. While comical, it does not deviate too far from the subtext of many a speech, article, or news clip about dementia. The term “epidemic” is in common usage in public

76 “We’re All in Our Own Little World” discourse about dementia, and “timebomb” speaks to the language of inevitability and catastrophe often used, particularly by way of natural disaster analogies. Plus, Monroe’s use of the word “deceased” in place of “diseased” is a telling Freudian slip. In this context, the slip is funny, but it does reflect views of dementia as “the death that leaves the body behind” (Downs, Small, and Froggatt 2006, 194) and people with dementia as zombies (Behuniak 2011). Aside from Monroe’s use of language in this scene, his choice of scientific anecdotes betrays his thinking. His reference to chimpanzees that use cannibalistic means to regulate their population is quickly set aside, not only on ethical grounds but also because “people are, as I understand it, of dubious nutritional value once past the age of child rearing” (Oglesby 2010b, 17). Such is the dark comedy of the play. To begin his closing remarks, Monroe explains that the aim is to “return to the elderly a sense of purpose. For without purpose there can be no dignity and without dignity we are barely human” (Oglesby 2010b, 18). The language here dehumanises people with dementia and presents a reductive view of older people. The word “dignity” is a frequent staple of public reporting on, and discussions about, dementia, including those pertaining to assisted dying. The prevailing view is that for someone with dementia, dignity is a near impossibility. Susan Behuniak (2011) observes that the “death with dignity” movement—one of the names by which the euthanasia movement has come to be known—implies a person with dementia cannot live with dignity. Overall, Monroe’s speech both reflects and parodies the dominant Western cultural view of people with dementia. Positioning this speech in the second scene of the play lays down the socio-political discourse that features throughout the play. Feehily makes a similar choice to open This May Hurt a Bit with a 1948 speech by Aneurin Bevan. As per Monroe’s announcement, those who cannot or do not wish to work as a grandparent are encouraged to take a place in the Ark. The Ark is an experimental medical treatment facility posing as a hospital, whose name suggests a reckoning of biblical proportions. The image of flood that the name evokes resonates with the common analogy of the tsunami that has been attributed to the crisis that dementia poses to society (Zeilig 2014). For those who wish neither to grandparent nor subject themselves to medical trials, there is a third option, the “increasingly popular” Home Death (Oglesby 2010b, 18). In his review of the play, Philip Brecht summarises the Ark as “a private enterprise with an identity crisis: is it a hospital, a care home, a hotel, or a Dignitas-type assisted suicide clinic?” (2010, 10). Throughout the performance, the setting becomes increasingly clinical, coming to centre on the Ark, away from public and domestic places and even away from the policymakers’ place of dwelling. This arrangement of settings in the play corresponds to a clinical dementia narrative where decline is associated with institutionalisation. In these places, each group represented is in some way insulated, in their own world: the raised governmental space and the cosy family setting are both isolated from the public, societal environment. As the clinical account of dementia progresses, so does a pharmacological discourse, which is

Social Narratives and the Family as Microcosm 77 driven by a political narrative. This interwoven discourse becomes absurd in its inhumaneness. The pharmacological narrative represents a particular departure from the present-day paradigm: robot nurses, limbs amputated in the name of medical research, euthanasia pitched as “quality of life,” avian hallucinations, and an older citizen’s wearing a mask in an attempt to bypass this system. This narrative takes root in the clandestine conversations between Monroe, Amanda, and Mike, but its outcomes are spatially removed from the political decision-making. The pharmacological measures and effects instead interweave with the experiences of the core family in the play. In this way, the pharmacological layer plays out in two settings: the offices of the government workers and within the Ark. Conversations had and decisions made in the former affect the happenings and people who exist in the latter. A meeting between the three policy-makers describes the early stages of testing the new drugs. Results show that in first three months of the Trials, many patients on “Ryanol” show an extraordinary improvement in their memory, but soon die after becoming paralysed. Other side effects of the drug include headaches, low blood pressure, incontinence, and loss of balance. Concurrently, “Lazaran” is found to be barely more effective than the placebo. It is revealed that, actually, the placebo is producing the most positive results, due in part to the diet the patients are on and the increased amount of time spent in doctors’ appointments. In a later meeting, the three discuss the results of Lazaran trials, which show that “the dose required to ameliorate the side effects is lethal” (Oglesby 2010b, 69), that is, after it induces hallucinations of parrots. The three take different positions in relation to palliative care. Amanda supports palliative care as much as curative measures, but Monroe disagrees. This is likely the cost difference. As the play goes on, the quality palliative care in the Ark begins producing a bottleneck, so Ryanol is pitched as a “quality of life” pill: a treatment that is both pleasant and deadly. Another element of the political–medical plot is a program that offers free brain scans to older people. As Monroe maintains, they “need to reach old people” (Oglesby 2010b, 53). Mike counters, saying that Alzheimer’s is detectable much earlier and so everyone should be scanned. This conversation is a turning point, where the focus turns from getting older people with developed dementia into treatment (testing) and towards anyone who will one day represent a burden under this regime. In the next scene between the three legislators, it is disclosed that Monroe’s own scan shows a faint, early indication of Alzheimer’s. Although his dementia is latent and asymptomatic, Amanda notes that he will have to go into the Ark. AMANDA: MONROE: AMANDA: MONROE:

At least you’ll be getting the best treatment. What do you mean? Well. You’d be able to go to the Ark obviously. I’m not going anywhere. (Oglesby 2010b, 66)

78 “We’re All in Our Own Little World” In this scene, Monroe’s power is diminished as he is forced to face his own policy decisions. Previously, Monroe has been able to remain detached from the effects of his scheme and those it affects. Only when he himself is discovered to have latent dementia do the practices of the scheme concern him; he refuses to test the deadly Ryanol. Monroe is next seen in the Ark, now a firsthand witness to the absurdity of the Trials. While he enters without any clinical sign of dementia, he develops an iatrogenic dementia as a result of his medication. Monroe is last seen in the Ark, following an imaginary parrot, a final effect of Lazaran before a presumably imminent death. His cognitive decline parallels the deterioration of the overall scheme and its participants. During a visit to sisters Lyn and Alice at the Ark, the emptiness of the facility unsettles brother Robbie. He reports that he saw “noone. Nothing. Just empty beds” on the ward (Oglesby 2010b, 87) and heard nothing but the sound of an incinerator coming from the morgue. These developments within the play cast doom over the residents of the Ark and are demonstrative of the breakdown of the policy into something resembling a eugenicist scheme. Outsourcing care In the National Theatre production, the “Government Office” is a set that eludes a precise location. Instead, this site is given an almost celestial authority as it is raised above stage height, while all domestic, public, and clinical scenes take place at stage level. Aside from the ostensible benefit of swift scene transitions, this visual demarcation positions the policymakers—Monroe, Amanda, and Mike—as having greater power than those below, lending the trio the quality of puppeteers. Furthermore, they are detached from the everyday personal and familial experiences of dementia. It is at this level that Monroe delivers his remarkable speech and announces the strategy for dealing with “demographic timebombs.” And, in the second act, Monroe’s diagnosis of latent Alzheimer’s precipitates his fall to Earth, as he moves from his position of almost divine power to the Ark at stage level. Monroe’s move to the Ark is closely paralleled by the introduction of Mimi, a robot nurse. She, too, is first introduced at the “political level” before appearing in the Ark. To emphasise her robot form, in the 2010 National Theatre production, Mimi is embodied with absurdly exaggerated mechanised movement. Congruently, Mimi’s behaviour is sometimes odd. She is programmed to mirror the person for whom she is caring, in speech and in mood, to perform synthesised empathy. Mimi’s speech could be described as echolalia, which is ironically a linguistic trait characteristic of dementia. Echolalia is someone’s seemingly empty repetition of another’s words without their understanding of the meaning (Guendouzi and Müller 2006, 169). Her voice is pre-recorded and electronic sound effects accompany her movement, emphasising her nonhuman presence.

Social Narratives and the Family as Microcosm 79 Visually, Mimi is actually given a divine mien. She wears white wings, which complement her white makeup, wig, and costume. Mimi’s angelic appearance amplifies the symbolism of the policymakers’ elevation and Monroe’s descent. In the context of the ageing population and the strain of health care systems, a robot nurse is perhaps something of a deus ex machina. Noel Sharkey and Amanda Sharkey report on the potential use of robots in dementia care: Rapid advances in service robotics together with dramatic shifts in population demographics have led to the notion that technology may be the answer to our eldercare problems. Robots are being developed for feeding, washing, lifting, carrying and mobilising the elderly as well as monitoring their health. They are also being proposed as a substitute for companionship. (2012, 282) In light of such developments in aged care, elements of Oglesby’s story have a basis in reality, or the reality of a near future, reflecting the “speculative fiction” genre. Robot companions are central to the films Robot and Frank (2012, Jake Schreier) and Marjorie Prime (2017, Michael Almereyda, based on Jordan Harrison’s 2015 play). The delegation of robots to aged care juxtaposes Monroe’s statement about the adoptive grandparent program in his opening speech, that there is “no better substitute for childcare than the [presumably human] individual” (Oglesby 2010b, 18). As the story goes on, public and domestic spaces feature less and scenes are more frequently staged in the Ark. This tapering of public spaces—and the waning of the domestic that follows—corresponds to a typical dementia narrative of decline, where institutionalisation is assumed to be inevitable. Additionally, as the performance follows Monroe’s journey, even the governmental setting is seen increasingly less. By the end of the work, all scenes take place within the walls of the Ark, seeing dementia become increasingly medicalised and cut off from public and even domestic settings. The family as microcosm I have spoken already in this chapter about the prevalence of dementia narratives centred around the family unit. Consider also the prevalence of memoirs about dementia written by family members (Chapter 1). I would argue that just as the dementia symptomology needs to be humanised, the health care systems and political side of medicine also requires this treatment. Brian Daniels’s Fighting for Life – The Findlay Report was commissioned based on a report intended to humanise the issues with dealing with the health system as a family. Really Old, Like Forty Five (2010) both aligns with the tendency to set dementia narratives in the family home and around the family, while also differing from plays discussed in other chapters in that it moves location between the domestic space and a place

80 “We’re All in Our Own Little World” of institutionalised care and public and governmental places, introducing a broader socio-political discourse. In this way, Oglesby affords insight into different worlds, different facets of the dementia “wicked problem.” Crucially, though, the play brings the focus back to the family. The various schemes under the regime affect each of the three siblings—Lyn, Alice, and Robbie—differently. In brief, Before Lyn’s dementia becomes especially conspicuous or disruptive to daily life, she joins the grandparenting scheme and begins to settle into and enjoy the role. However, when she begins to show unmistakable signs of dementia, the family know she has to go to the Ark, despite their willingness and desire to keep her at home. Lyn’s sister, Alice, has a leg amputated after a fall in her home and later a finger taken for research. Afterwards, she is seen with various intravenous tubes that are conducting tests to treat obesity, though she is not obese. While Lyn and Alice are sent to the Ark for cognitive and physical ailments, respectively, their brother, Robbie, is preoccupied with appearing and acting younger than he is. Intent on staying out of the grandparenting scheme and the Ark, Robbie continues to work as an actor. Throughout the play, comments are made about his youthful looks, clothing, and girlfriends. However, in keeping with the play’s absurdity, in a scene late in the play, Robbie is exposed to have been wearing a mask. When the mask is pulled off, he looks 20 years older. After this, Robbie does not appear again, and the next scene featuring the family takes place after his funeral. The adults explain to teenage Dylan why Robbie elected to take a euthanasia pill after being exposed as an 85-year-old: CATHY: DYLAN: ALICE: DYLAN: CATHY:

They stopped his treatment What treatment? He had internal trouble. And once they found out his real age they took away his pills. Why? No longer cost effective. (Oglesby 2010b, 106)

Both Alice’s and Robbie’s stories—neither of whom have dementia—demonstrate the fundamental ageism in the diegesis of the play. Within this family plot, the play has room to explore the signs of Lyn’s dementia, perspectives on those changes, questions around who should be taking on care duties, and a generational discourse, all themes typical of family-centred dementia narratives. The “brilliant sufferer” trope The signposting of Lyn’s dementia begins subtly, and progresses linearly according to the clinical advancement of dementia. It is primarily demonstrated in

Social Narratives and the Family as Microcosm 81 Lyn’s language. Lyn’s early memory loss is first marked by circumlocutory discourse when Lyn describes almonds as “You know, with the eyes. Nuts. Shaped like eyes, you know, those little eye-shaped ones that taste a bit like like like almonds” (Oglesby 2010b, 9). Circumlocutory discourse is a compensatory measure for memory loss; the term refers to talking about an object instead of naming it (Harding and Palfrey 1997). Later in the same opening scene, Lyn’s memory loss is revealed to be more significant than anomia, when she exhibits anterograde amnesia, an impaired capacity to create new memories. It is indicated when Lyn suggests that they “all just sit down and relax, have a nice cup of tea and a piece of cake?” When her daughter Cathy tells her, “You’ve already had both those things,” Lyn “stares at her plate, trying to fathom it” (Oglesby 2010b, 14). In a later demonstration of Lyn’s cognitive decline, she forgets the words “copper” and “handles,” describing a particular cupboard as “the one with the little cocky arms” (Oglesby 2010b, 34). She here exhibits paraphasia, which refers to the substitution of words within a sentence, unbeknownst to the speaker (Brown and Hillam 2004). Her use of the words “cocky” and “arms” are examples of phonemic and semantic paraphasia, respectively. The former is attributed to substitutions that are related by sound, and semantic paraphasias occur when the word said is associated to the meaning of the intended word (Brown and Hillam 2004, 22). Markers of Lyn’s dementia continue, worsening throughout the play. Soon after an argument with Cathy, Lyn asks if they have had a disagreement; their argument only ends because Lyn gets up to leave to “meet Diana by the canal” (Oglesby 2010b, 75), a character unmentioned elsewhere in the play. Earlier in the play, Cathy was in a state of denial about her mother’s condition, rationalising that Look. This is a woman with a degree in genetic engineering. She’s written for the New Scientist. She reads newspapers, novels, she’s given lectures. She’s been on University Challenge. She can’t have Alzheimer’s. Not now. Not yet. She’s too … young […]. (Oglesby 2010b, 43) Cathy is unable to reconcile the two ideas of her mother as an intelligent, successful woman and a woman with dementia. Her inability to conceive the coincidence of a high-functioning mind and Alzheimer’s disease aligns with the impulse to demarcate between the person before and the person since dementia. But this aspect of Lyn’s character also reveals a problematic inclination of dementia narratives and an issue with centring on one family. Characters with dementia tend to be marked as having exceptional intelligence or having held impressive, intellectual jobs, for example, The Other Place (research scientist, working on an Alzheimer’s medication), Plaques and Tangles (lexicographer), Tu Te Souviendreas de Moi (history professor), Inside Out of Mind (neurologist), Sundowner (writer), Still Alice (linguistics professor), Waiting Room

82 “We’re All in Our Own Little World” (surgeon), Dark Matter (astrophysicist), and Laughter in the Shadow of the Trees (distinguished critic). A review of Plaques and Tangles recognises: “Megan’s a lexicographer with a first-class English degree because clever folk with dementia are just so much sadder” (Trueman 2015). This trope also appears in films, for example, Iris (Eyre, 2001), The Iron Lady (Lloyd, 2011), and Still Alice (Glatzer and Westmoreland, 2014). As Catherine Shoard (2014b) writes of the latter, “[t]hat Alice’s profession concerns cognitive function over-eggs the pudding, adds to the unhappy sense that the tragedy of Alzheimer’s is heightened when it hits an intellectual.” Some of these plays and films are also examples of younger-onset dementia cases (The Other Place, Plaques and Tangles, Sundowner, and Still Alice), although people over 80 represent the overwhelming majority of dementia diagnoses. Unfortunately, “[o]ld women may not be so photogenic” (Andrews 2015). Films that represent dementia in this way, though positively reviewed, are identified as “fuel[ling] the myth that the disease is only tragic when sufferers are young” (Shoard 2014a).3 Commenting on the more recent films, The Father (Zeller, 2020) and Supernova (Macqueen, 2020), Alison Wilde (2021) expands on this issue: as much as I liked both of these films, it is rather disappointing to see the continuing marginalisation of economic privilege by featuring people who are wealthy. This matters. First, there is repetition of the ‘how far have they fallen’ trajectory, from polymath to being unable to remember your own name, which works to uphold the hierarchies of merit/talent which push most of us (particularly disabled people, those from ‘working-class’ backgrounds, and marginalised ethnic groups) to the bottom of the pecking order. Secondly, it also neglects, even denies, the importance of wealth in the provision of resources and support. It is something of an insult to disabled people to remove considerations of economic hardship when we are disproportionately represented amongst ‘the poor.’ Shoard (2014a) corroborates: “Cinema’s persistent interest in only unusual, famous or apparently extra sad cases risks further ghettoising the majority of sufferers.” In the introduction to this book, I noted the lack of intersectional4 perspectives in dementia narratives, both on and off the stage. This is in line with broader representations of ageing. “Dominant narratives paint aging as ahistorical, acultural, and universal, conspiring with ablebodiedness, class, gender, race, and other mechanisms of marginalization that impact everyone, whether in youth, midlife, or old age” (Ball 2006, 214). This skewed representation is mirrored in dementia advocacy (Bartlett 2014; Shakespeare, Zeilig, and Mittler 2019), as well as cohorts of research participants living with dementia. For example, Sabat’s (2001) study participants were on the whole very well educated and he asks, “How could we know that less educated AD [Alzheimer’s disease] sufferers do not experience similar emotional reactions to their losses if those very

Social Narratives and the Family as Microcosm 83 people are not related to and engaged in conversation as were [his participants]?” (Sabat 2001, 89). Wendy Hulko’s (2009) study of experiences of people with dementia makes an unexpected contribution. The small study found that the most privileged participants (“on the basis of their gender, ‘race,’ ethnicity, and class”) expressed the most negative feelings about their dementia, while those who were less privileged brushed off their dementia as “not a big deal” (Hulko 2009, 136–137). Generational discourse Underpinning this trend in dementia narratives is widespread ageism that presumes we do not care about older people with dementia. Another facet of this ageism is what I call the “generational discourse” that refers to the inclusion of, and sometimes the focus on the experiences of, children and grandchildren of the character with dementia.5 This generational discourse can be attributed to several factors. First, the direct dementia experience presents a greater challenge for representation than the family experience of illness. Secondly, the process of memory loss has implications on the relationships between the person with dementia and their family members. Thirdly, the parent–child role reversal is recognised as a significant disruption to familial relationships (Zimmermann 2013; Rau 1991). In addition to the expected theme of familial burden, the generational discourse easily facilitates comparisons between old and young and the demarcation of those with dementia and those without. A generational discourse is first established in Really Old, Like Forty Five with the announcement of the grandparenting scheme and continues to appear in several exchanges between characters. Millie becomes part of the family as Lyn’s surrogate grandchild through this scheme. When Lyn’s dementia develops, Millie continues to see her, having connected well with her older counterpart. In a conversation with Alice and Millie, Lyn herself highlights the generational discourse: She is the future. Her imagination will shape what comes next. What she thinks is important. It doesn’t matter what I think. I’m old. What I think isn’t important. It won’t shape anything it will just float about a bit and if it lands, form a thin unwanted coat, like dust. (Oglesby 2010b, 25) This is not a new idea. Consider the catalyst for the action in King Lear—the titular character’s decision that his kingdom should be “conferred on younger strengths” (Shakespeare c1606, 1:1:37–39). While Millie is deemed to be “the future,” Lyn’s self-description of becoming dust aligns with attitudes of ageism and demonstrates the pervasiveness of these views that older people will use such descriptions themselves. Paradoxically, people with dementia can

84 “We’re All in Our Own Little World” experience infantilisation, too, as discussed in Chapter 2 (Marson and Powell 2014; Andrew 2006). ALICE: MILLIE: ALICE: MILLIE:

She hasn’t always been like this you know. Like what? Like a child. She’s cool. (Oglesby 2010b, 34–35)

So, as Lyn’s dementia progresses, her relationships with her siblings and her daughter change. Meanwhile, her relationships with Millie and Dylan are enhanced, to the extent that Dylan teaches his great-aunt how to play his favourite video game. When Cathy tells Dylan “You’re not here. You’re always in your own little world,” he replies that “We’re all in our own little world” (Oglesby 2010b, 45). This, amid a conversation about Lyn’s dementia, destabilises the demarcation of Lyn from those without dementia. Interestingly, the younger characters in Really Old, Like Forty Five take a different view on Lyn’s dementia to her daughter and siblings: DYLAN: ALICE:

Do you know, it’s weird, but Aunty Lyn doesn’t swear so much any more. And she remembers stuff like she’s there. What’s the point of being there if she’s not here? What’s the point of that? (Oglesby 2010b, 89)

The adults’ comments paint Lyn as unwieldy and unmanageable, but the teenager finds her relatable. This is demonstrative of Lyn’s becoming a younger version of herself, potentially in the sense of retrograde amnesia. Meanwhile, Cathy is struggling with the idea of a reconfigured relationship (a role reversal) with her mother: I know what you’re all thinking. But I can’t. You know what she’s like. She’s not domesticated. […] I’m sorry, I’m not a child any more – she never even wanted to be a mother and I certainly don’t want I can’t be a mother not now, god, not to her not like this, I just, it’s not that I don’t care, it’s just, it’s not that I don’t love her, it’s just I’m too young to die I’d rather kill myself. (Oglesby 2010b, 45) In her anxiety about the parent–child role reversal, Cathy equates being a carer to a kind of death, taking on the notion of social death for herself, whereas the metaphor is usually attributed to the person with dementia (Sweeting and Gilhooly 1997; Kontos 2004; Downs, Small, and Froggatt 2006). Cathy’s monologue both

Social Narratives and the Family as Microcosm 85 evokes and rejects Fuchs’s (2017) identification of the “Older Daughter” as carer plotline. There are others including Isabelle in Tu Te Souviendras de Moi who also resist it (though Isabelle is painted as a character who is professionally ambitious and lacking some empathy). Despite Cathy’s resistance, the preservation of family relationships, a family unit even, is highlighted in the play. CATHY: LYN: Beat.

We can’t leave you alone, Mum. That’s the point. Yes you can. We’re all alone. We’re born alone and we die alone.

CATHY: LYN: CATHY:

No. We’re not. Yes we are and that’s fine by me. We’re born attached. We’re born attached to our mothers. (Oglesby 2010b, 59)

In this exchange, Lyn herself resists the notion of intergenerational attachment, while Cathy now makes reference to the physical attachment of child to mother at birth. Diana Gustafson observes that no “paternal equivalent in everyday language similarly connects men to the care of their children [as women]” (2005, 3). Practically speaking, women do take on the majority of care roles for older adults in their lives (Godfrey and Warshaw 2009).6,7 One final event that underscores the generational discourse is Millie’s pregnancy, which pointedly coincides with the diagnosis and advancement of Lyn’s dementia and Alice’s amputations. The birth comes around the time of Robbie’s physician-assisted suicide. This parallel is also made manifest in a projection of medical imagery. When Monroe’s latent Alzheimer’s is found on a scan, the brain scan is projected behind: A magnified projection of two brains. One is ‘normal’ the other, MONROE’S, shows up some abnormalities. (The two hemispheres merge imperceptibly during the scene, and are transformed into the image of a foetus.) [ … then by the end of the scene] Projection: A scan of the foetus. MILLIE, pregnant. (Oglesby 2010b, 66, 71) Brain scans are one of the common types of images associated with dementia. The inclusion of this image ties in well with the societal and pharmaceutical discourses, demonstrating the biomedicalisation of dementia within the Western cultural perspective. In this instance, the transition from this emblem to a foetal scan suggests the emergence of a new generation dovetailing with the winding down of the older generation. The question of how younger generations will

86 “We’re All in Our Own Little World” support older ones is a common feature of dementia stories in journalism. Many raise concerns around the convergence of the ageing population and labour shortages, complicated by the fact that women are more likely than during the 20th century to be part of the workforce. Endings: A failed deus ex machina The dystopian narrative interwoven with the family narrative allows this play to explore a failed deus ex machina in Mimi the robot. Initially, Mimi is positioned as a deus ex machina, “ancient stagecraft in which an actor playing a deity would be physically lowered by a crane-like mechanism onto the stage” (Rokem 2017, 781). Of course, in contemporary theatre, film, and literature criticism, the deus ex machina is often reviled as being a facile ending to a story. Mimi’s form and her descent from the raised platform support the former description. Freddie Rokem (2017) describes how Aristotle criticised the use of a divine intervention in drama, when a deity, exterior to the narrative, suddenly appeared to resolve the complication of the story. In his view, “within the action there must be nothing irrational. If the irrational cannot be excluded, it should be outside the scope of the tragedy” (Aristotle quoted in Rokem 2017, 781). In this way, narratives of dementia make for complicated subject matter, because dementia precludes catharsis in its inability to be unravelled. Mimi is a relative success in the Ark. Scenes between the two show Mimi to be a real comfort to Lyn. Despite Lyn’s fondness for Mimi, her family—Cathy in particular—is baffled by the connection between the two. Ultimately, Mimi comes to represent a failed deus ex machina, as she cannot solve the predicaments of the diegesis. Mimi is destroyed in the final scene of the play; Cathy chases her around the room before “killing” the robot in frustration. In a way, Cathy is reclaiming her role as a care partner. Philip Brecht (2010) shares a different and valuable interpretation: “The sorry reality of working on the front line of care is highlighted when Mimi is violently abused by a family member.” Considering dementia as a “wicked problem” is useful in that it acknowledges the complexity of how the condition manifests in our homes, healthcare systems, and legislation. The concerns with nursing homes (safety and fair remuneration for workers, identifying and preventing elder abuse, private ownership that leads to overpriced fees), not to mention the difficulty of the choice to place a loved one in care, have led to suggestions that adult children be “compelled to look after their parents or grandparents” (Oglesby 2010a). Such proposals only fuel feelings of burden. To some, like Baroness Warnock or Cooley, assisted dying could be part of a solution to the wicked problem. In contrast, Rebecca Wood (former CEO of Alzheimer’s Research UK) insists that “The solution to our dementia crisis is not euthanasia; the answer is more research so we can find new treatments, preventions and a cure” (quoted in BBC News 2008). As Oglesby (2010a) herself has written: “My play imagines what would happen if we failed to come up with any solutions.”

Social Narratives and the Family as Microcosm 87 Notes 1 Most literature on “wicked problems” draws on Horst W. J. Rittel and Melvin M. Webber (1973) who identify in their article 10 properties of the wicked problem. These include each dilemma’s uniqueness, its being symptomatic of another problem, and the lack of clear right/wrong, good/bad solutions. 2 I had access to the play’s script and viewed a video recording of the work at the National Theatre archive. Both Oglesby’s script and the 2010 Anna Mackmin-directed National Theatre production of Really Old offer significant physical and visual features that are critical to the construction of dementia and its ripples into domestic, public, and political contexts. I draw on both the published script and the National Theatre for visual elements. 3 Despite a tendency towards stories of younger-onset dementia in the mainstream (and the exceptionalism of their representation), Phyllis Braudy Harris (2004) calls younger people with dementia “an overlooked population” and identifies some crucial gaps in how we understand their experiences. 4 Intersectionality is the recognition that “race, class, gender, sexuality, age, disability, ethnicity, nation, and religion, among others, constitute interlocking, mutually constructing or intersecting systems of power” ( Hill Collins and Bilge 2016, 28). 5 This generational discourse around dementia is sometimes staged in a metatheatrical way, with the exclusive use of young actors. Examples of this kind of casting are Also a Mirror ( 2011), Moments ( 2014), and Memory and Beyond ( 2018). To illustrate, the Oldham Theatre Workshop produced Moments with a cast of 8- to 25-year olds playing various ages; the work has a cross-generational narrative, expressing different points of view on dementia. Additionally, a work by Fevered Sleep, On Ageing ( 2010), is a theatre piece for adults—about ageing generally, not specifically dementia—that is performed by children aged between seven and 12 who deliver “first person narratives to recount the thoughts, memories and feelings of adults of different ages” ( Nicholson 2011, 56). 6 Overall, in the performances I have identified, more often the character with dementia is a woman (excluding plays that include multiple characters with dementia). Some research demonstrates that age-related dementia affects more women than men, though, women’s longer life expectancy is recognised as the driving factor ( Nepal, Brown, and Ranmuthugala 2008). Despite the observed female prevalence in dementia statistics, the number of females affected by dementia in the catalogued performances compared to male representations is notable. The women affected with dementia in the performances tend to be wives, mothers and/or grandmothers, and these relationships are often foregrounded in the narratives, especially in relation to relationship breakdown or role reversal. In plays that centre on a heterosexual couple, it tends to be the wife with dementia and the husband who must step into the role of care partner or deal with his spouse’s decline/death. Note the centuries-old emphasis on women as the primary carers of children ( Stavrianos 2015; Connell 2009; Clatterbaugh 1990; Gustafson 2005), including the assumed “biological ties” between mother and child ( Gustafson 2005, 26) and the qualities of care and affection commonly attributed to women, and mothers in particular ( Stoller and Herdt 1982, 34). So, perhaps the reversal of a traditionally gendered wife–husband care dynamic makes for a particularly compelling story. Following this gendered care paradigm, adult–child care partners are often female characters as well. I return to Fuchs’ two 2017 articles in The Theatre Times (the first of which declares dementia “the [2016] theatre season’s ‘in’ disease”), which discuss Marjorie Prime ( 2015), Dot ( 2015), The Father (2014), and The Humans ( 2014), all of which feature this trope. In Fuchs’ view, “a standard dementia plot is emerging: Older Daughter (why is it always a daughter?) is sacrificing her life to caregiving”

88 “We’re All in Our Own Little World” ( Fuchs 2017). I put forward that the women-as-caretaker presumption is a factor in the wives/mothers-with-dementia tendency, as well as this older-daughter-as-carer trend. And, the dissolution of the archetypal care dynamic—in these cases, a parent–child or wife–husband role reversal—arguably makes for a captivating narrative. However, these stories can tend to shift the focus from the person with the dementia onto their child or spouse, hinging the tension and resolution of the plot on the experience of the family member. 7 To balance the above views on female care partners, see Phyllis Braudy Harris’s paper “Listening to Caregiving Sons: Misunderstood Realities” ( 1998). Braudy Harris, too, acknowledges that care for an ageing relative has traditionally fallen on female family members.

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Cited performances Also a Mirror (2011) by Sean Riley (Urban Myth Theatre Company) (Australia) Dark Matter (2017) by Vertebra Theatre (England) Don’t Leave Me Now (2014) by Brian Daniels (England) Dot (2015) by Colman Domingo (US) Fighting for Life (2017) by Brian Daniels (England) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) King Lear (ca. 1606) by William Shakespeare (England) Laughter in the Shadow of the Trees (1996) by James Prideaux (US) Marjorie Prime (2015) by Jordan Harrison (US) Memory and Beyond (2018) by Playhouse Youth Theatre (England) Moments (2014) by Oldham Theatre Workshop (England) On Ageing (2010) by Fevered Sleep (England) Plaques and Tangles (2015) by Nicola Wilson (England) Really Old, Like Forty Five (2010) by Tamsin Oglesby (England) Still Alice (2013) by Christine Mary Dunford after Lisa Genova (US) Sundowner (2011) by KAGE (Australia) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) The Humans (2014) by Stephen Karam (US) The Other Place (2011) by Sharr White (US) Where or When (2021) by Brian Daniels (England) This May Hurt a Bit (2014) by Stella Feehily (England) Tu te Souviendras de Moi [You Will Remember Me] (2014) by François Archambault, translated by Bobby Theodore (Canada) Waiting Room (2014) by Diane Flacks (Canada)

Part 1 Summary

There are different types of dementia narratives: socio-cultural, political, medical, clinical (in care settings), familial (usually taking place in the family home), and individual and/or interior. Chapter 1 explores some theatrical means to represent the latter. Theatre has the capacity to evoke placelessness (as in Autobiographer) or a diminishing sense of place (as in The Father) which makes the form distinctive from other narratives of dementia. The Father, Autobiographer, and Inside Out of Mind each attempt to present onstage the interior experience of dementia. The endeavour was crucial for the goals of the Inside Out of Mind project, to educate and invoke empathy in its audience of care workers. Shabahangi’s (in Nicholson 2011, 59) observation that “[p]eople with dementia are not present in the way our consensus of reality expects them to be, but they are there in their own way” is a valuable jumping off point. Chapter 2 demonstrates how these individual experiences of reality can be staged alongside the stories of professional carers. Inside Out of Mind deploys a rich dramaturgy to layer individual memories and/or realities over the consensus of reality, the ward. Although Shabahangi is not speaking in the context of performance, he notes that the behaviour of people with dementia may sometimes be “non-linear” (quoted in Nicholson 2011, 59). Some behaviours in advancing dementia are put under an umbrella called “behavioural and psychological symptoms of dementia” (BPSD). The notion of “BPSD” has been critiqued by some, on the basis that it may be used to dismiss a person’s genuine responses to their environment. For example, behaviours exhibited out of fear, distrust, discomfort, or pain may be chalked up to dementia instead of heard and treated in earnest. Those against the term do not necessarily dispute the use of associated medications, only their overuse or misuse. A play like The Father actively positions its audience to share in André’s confusion, frustration, and fear. Instead of layering different experiences of reality as Inside Out of Mind does, it only gives the audience André’s experience. His behaviours, some of which would constitute “BPSD,” may be negatively received by those around him, but the play shows us that they are, for the most part, consistent with what he is experiencing. His reality is the audience’s reality. DOI: 10.4324/9781003282037-6

Part 1 Summary 93 Chapter 3 expands on some of the issues present in healthcare systems that are apparently under-equipped to handle an ageing population. Its accurate use of clinical markers keeps the story grounded while it explores a dystopian future in which ageism and capitalism can play out in extremes. The audience witnesses the family home and several other sites of dementia narratives. Really Old, Like Forty Five traverses from public spaces and a domestic space, in which the familial scenes take place, to a raised platform upon which policy decisions are made, and finally to the Ark, where the pharmacological narrative is seen embodied. Ultimately, though, individuals—not publics—are diagnosed with dementia, and they and their families feel the effects of not only the condition but also the policies, rhetoric, and healthcare systems. Really Old, Like Forty Five is one of a group of plays that confront societal dementia narratives. These tend to be performances from the UK, where dementia awareness and activism is strong. What is common among the political plays about dementia is the use of the family as a vehicle to take the audience through the healthcare systems, to give a face to the condition. By contrast, Autobiographer and Inside Out of Mind minimise family themes to an extent, and instead focus, respectively, on Flora’s inner world and a surrogate family of patients and carers. These four case studies—while distinct in terms of their development and reception—have shown the ways in which theatre may afford witness to experiences to dementia. Reference Nicholson, Helen. 2011. “Making home work: Theatre-making with older adults in residential care.” NJ: Drama Australia National Journal 35(1): 47–62. doi: 10.1 080/14452294.2011.11649541

Part 2

Active and Passive Embodiment

4

Transforming the Domestic Space Sundowner and 1 Beach Road

Dementia and embodiment Dr. Cheryl Sadowski has stated that dementia eventually destroys up to one-third of brain mass, leading to an individual who “is lost but still present” (quoted in Elton 2008, 271). Beliefs such as this lead to labels like “empty shell” ascribed to people living with dementia, not only a dehumanising and essentially false summation of the selfhood of people with dementia (as Steven R. Sabat (2001) and Tom Kitwood (1997) have shown), but one that overlooks the role of the body in selfhood. Thomas Fuchs confirms that: Even when dementia robs the patients of their explicit memories, they still retain their body memory, that means, their familiarity with environments, habits, sensory and motor memories. And instead of relying merely on rationality and autonomy, their self is seen as being primarily based on intercorporeality and interaffectivity, which remain in place despite the progress of the illness. (Fuchs 2020, 673–674) The assumption that dementia results in a loss of self “denies the body an agential role in the constitution and manifestation of selfhood” (Kontos 2005, 553, 2003, 2004). Peter Oberg also recognised in the 1990s that, while ageing is “experienced via the body,” “the body [had] been absent from social geron­ tology” (1996, 701). Writing about dementia more specifically, Pia Kontos, drawing on Merleau-Ponty’s theoretical approach to the body, argues that “[d] espite the loss of memory, the body itself still possesses a life force that continues to engage with the world” (Kontos 2003, 161). She also cites “Bourdieu’s notion of habitus [that] connects the body to culture and to social structure, thus ren­ dering his contribution to a notion of embodiment indispensable” (Kontos 2003, 162). Kontos argues for Kitwood’s pioneering work to be extended as such, and that activities carried out in care to nurture personhood consider “embodied selfhood” (Kontos 2005). In relation to how we think about supporting and caring for people with dementia, she finds that the biomedical approach to

DOI: 10.4324/9781003282037-8

98 Active and Passive Embodiment dementia “focuses solely on individual neuropathology, consequently over­ looking the equally important role of external factors on disease progression (e.g., the impact of treatment contexts and caregiving relationships)” (Kontos 2003, 158). In her work with people with dementia in long-term care, participants demonstrated sustained selfhood in that they “interacted meaningfully with the world through their embodied way of ‘being-in-the-world’” (Kontos 2004, 829). Further, Kontos provides examples—both real-world and literary—of people with dementia who continue or re-take up an artistic practice. In the case of the artist W. de Kooning, she says that the “continued implementation of his artistic intention in the face of neurological impairment is a testimony to the body’s potentiality for innovation and creative action” (Kontos 2003, 167). See also Hughes (2001, 86) for his “situated-embodied-agent view of the person,” which opposes John Locke’s construction of the self as built on memory. Rebecca Bitenc, too, has considered the role of the body in dementia nar­ ratives. “Attending to the body in dementia also opens up the possibility of finding avenues for communication that do not rely heavily on coherent ver­ balisation” (Bitenc 2020, 29). She does, however, acknowledge that verbal communication is also embodied. Part 1 of this book broaches performances that are primarily language-based in the sense of traditional drama. Language is a significant aspect of performance because of its association with power. It is a particularly pertinent aspect for analysis in the case of dementia narratives where speech may demonstrate decline through clinical markers. In the performances examined here, embodied elements may produce meaning alongside, or in lieu of, spoken language. And, the body becomes especially important in live per­ formance compared to other storytelling mediums, as it emphasises the live body. The characters are present in shared time and space with an audience, height­ ening consciousness of their embodiment. Embodiment here (in Part 2) refers to the form in which characters with dementia are presented, particularly in relation to characters without dementia. This may be passive, as when puppets perform in the co-presence of live actors, or more active, where movement or dance is driven by the character themselves. However, it is not as simple as puppetry versus a live human body. Notions of dependence may be enacted in dance (as in Sundowner) and puppetry where it appears independent of human performers can activate the puppet to take on a quest (as in It’s Dark Outside). Therefore, while I touch on ways the dementia symptomology is embodied onstage, what is more important to this part of the book is understanding how people with dementia continue to have embodied experiences of the world and how embodied self­ hood can play out in live theatre that goes beyond spoken dialogue and mimetic characterisation (though Autobiographer is not mimetic). Following on from Part 1, which began some meditation on settings for dementia narratives, Chapter 4 discusses two performances set in the domestic space. The physicality of both works transforms the domestic space. Sundowner does so primarily through dance and 1 Beach Road through physical theatre and objects.

Transforming the Domestic Space 99 Janet Gibson quotes Deirdre Heddon (2008) that our lives are “‘located’: embodied as gendered, raced and sexed subject[s] in and through specific spaces” (Gibson 2020, 196). Gibson adds that place is significant to disability, whether in the sense of access or institutionalisation. The family home as setting, therefore, frames dementia experiences in performance in a particular way, especially where per­ formance tools that accentuate embodiment dictate their interaction with home. Sundowner and 1 Beach Road Sundowner (2011)1 is a dance theatre work by Australian company KAGE, conceived and directed by Kate Denborough and conceived and written by David Denborough. Sundowner was produced in association with Alzheimer’s Australia and involved some research in its development (Gibson 2020, 163; Hawker 2012; Upton 2012). The story is about Peggy,2 who lives alone and whose younger-onset Alzheimer’s disease is beginning to problematise her independent living. The performance is staged in a domestic environment (Julie Renton’s set design is showcased in a video available at www.kage.com.au/ sundowner/). Peggy is visited there by her daughter, son, son-in-law, and (in a brief final scene) grandson. Mimetic setting, language, and acting intersect with physical theatre and dance, which evoke “embodied memories.” I use this term to describe theatrical moments that disrupt the “consensus of reality” to stage experiences of the character with dementia, thus inviting an audience to share in their experience of reality (see more examples in Chapters 1 and 2). 1 Beach Road3 is a physical theatre performance about Jane and Victoria who meet, fall in love, and open a bed-and-breakfast on the English coast, before Jane develops younger-onset dementia. Devised by RedCape Theatre based in the UK, the work was written by Solveig Holum, directed by Sabina Netherclift, and assistant directed by Cassie Friend, a founding member of RedCape Theatre. The work has an abstract set design and presents both actively and passively embodied characters. My analysis examines how the central relationship is em­ bodied and explores the analogy of coastal erosion that ties the performance together. The couple face the threat of their home falling into the sea. The narrative allegorises Jane’s dementia in this way as the story moves between the stress regarding the fate of their home and the anxiety about Jane’s decline. Transforming the domestic space The domestic setting, the family home, is a site of dementia narratives that is crucial to investigate. Older people, with and without dementia, largely desire to “age in place,” that is, to grow old in their own homes as opposed to moving into longterm care (Odzakovic et al. 2020; Beard et al. 2012). This aspiration is troubled by reports and research that illustrate that people with dementia can be vulnerable to isolation at home, for example, those living alone (Odzakovic et al. 2020). The

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family home also carries with it notions of the familiar and private and is a key site of the familial ripple of dementia (as discussed in Chapter 3), as the management of dementia is often consigned to immediate family. In this book, narratives based around the domestic space are found in The Father and Sul Concetto di Volto nel Figlio di Dio, both of which see spaces transform (see Chapters 1 and 7, respectively). Domestic spaces are also the settings for the plays Marjorie Prime, Dot, 27, Don’t Forget to Remember Me, Lovesong, Laughter in the Shadow of the Trees, and (most of) Tu te Souviendras de Moi, to name a few. How does dementia transform the experience of the domestic space for those who inhabit it? The cognitive decline that characterises dementia—including memory loss, communicative/linguistic difficulty, and some behavioural and mood changes—has consequences for the individual’s capacity to perform daily tasks and live independently. This amounts to a diminished agency in one’s own home. With memory loss, the familiar may become unfamiliar, diurnal rhythm disturbances (day-night reversal) can disrupt typical day and night activities, and one’s relationship to objects may be complicated by agnosia (difficulty in re­ cognising objects or people). Dementia can affect visuospatial and perceptual cognition (de Rover et al. 2008). As it manifests, people with dementia begin to struggle to grasp place and chronological time. A new reality can emerge from medications, new routines, new care partner duties, and visitors who call on the home not only to socialise but also to check in on the person with dementia. While both care homes and family homes can be sites of care, one is designed to function as such, while the other is transformed. In contrast to a mere resi­ dence, a home is often considered a site of memory, security, and belonging (Milligan 2003; Blunt and Dowling 2006; Graham, Gosling, and Travis 2015), qualities that are reinforced by personal possessions (Milligan 2003, 461). Yet, as dementia progresses, the familiar home can be endowed with unhomeliness: As a hospice, home becomes coded as both good and bad – a familiar, noninstitutional setting, but also a site of unresolved family tensions. When home becomes a place of terminal caregiving it remains associated with comfort and control, but there is also lack of control, as strangers (publicly provided caregivers) and/or relatives may move in. (Blunt and Dowling 2006, 100) To describe home care as a “site of unresolved family tensions” recognises that the home becomes the locus of the familial burden and altered relationships associated with dementia for both spouses/partners and children. Live theatre performance about dementia may represent all these aspects of transformation that transpirein the home; but representation beyond realism can further transform the domestic setting with visual metaphor using physical the­ atre, dance, lighting, sound, and objects being used beyond their mimetic dra­ matic function. Furthermore, memories can be brought to life onstage, as described in Chapter 2 on Inside Out of Mind.

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Peggy’s dementia: Sundowning and embodied memories Sundowner takes place in a section of Peggy’s home, including a front door, a desk, a settee, a television, and a curtained back window. The desk is an important site; it is surrounded by books, newspapers, and Peggy’s writing materials. Several times throughout the work, the desk becomes a refuge as she crawls underneath it from behind and emerges facing the audience (Figure 4.1). The set and its props help illustrate Peggy’s dementia, showing her struggle with everyday objects. Anterograde amnesia (simplified: short-term memory) is demonstrated when Peggy adds extra sugar to her tea, having forgotten the first two teaspoons. She also exhibits apraxia (problems with executing a motor task). When she puts on a pair of lace-up shoes, she hesitates at the laces before crossing to her desk for a pair of scissors to cut the laces off. Most significantly, Peggy shows the “mirror sign,” a “delusional misidentification in which patients believe that their own reflected image in a mirror is another person” (Brown and Hillam 2004, 51). For example, the person with dementia may strike up a conversation with their own reflection. Peggy has a fluent conversation with the person in the mirror, even imagining that they are responding to her questions. As well being a clinical emblem, this interaction with the mirror plays with a dichotomy of the un/ familiar: she is talking to herself, but not recognising herself, yet comfortable conversing with this reflected stranger in her home. A similar interaction takes place between Peggy and her television, which is broadcasting the Australian Broadcasting Corporation’s The Book Club, hosted by Jennifer Byrne. She an­ swers Jennifer’s questions as though she herself is on the show. The title of Sundowner has clinical significance. A phenomenon known var­ iously as sundowning, sundowning syndrome, and sundowner’s syndrome sees symptoms worsen from late afternoon or evening. It does not occur in all cases of dementia. It is commonly associated with “disorientation, confusion, agitation, restlessness, wandering and anxiety” (Rindlisbacher and Hopkins 1992, 15). Labels such as sundowning should be questioned, however. Gibson offers a useful critique: Sundowning is not pleasant, either for the person or for their care partners. But recent research has posited that, apart from the fact that these episodes do seem to come on at dusk and can involve delusions and aggressive behaviours, they can be mitigated by the responses of the care partners (Dementia Care Notes 2015). Moreover, unrealistic expectations from care partners may add to the problem. Dementia activist Kate Swaffer argues that sundowning is “another label which simply medicalises normal responses to fatigue” (2018). She dislikes the term, seeing it as misrepresentative and possibly harmful (ibid.). Sundowner does nothing towards offering any possibilities for Peggy and her sundowning situation. (2020, 164)

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Figure 4.1 Sundowner. The actor Helen Morse sits on the stage floor among haphazard piles of books at the base of a wooden desk. She has brown hair, worn out. She is wearing a grey cardigan over a patterned dress. Her shoes are lace-up sneakers. Her knees are slightly bent; one of her hands is held to her chest and the other is near her face. The actor and the desk are lit by a light at the front of the stage. In the background, two men in grey singlets and shorts (played by Gerard Van Dyck and Stuart Christie) are against the wallpapered stage wall. One man is holding the other above his head, gripping him under the arms which are held out to his sides. Together, they form a shape like a cross. Photo credit: Jeff Busby.

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Worse representations of sundowning do exist. The Visit (M. Night Shyamalan 2015) is a horror film whose original title was “Sundowning.” It employs tropes of the haunted house movie and features a transformation of the domestic space (Batch and Ryan 2023, submitted). Sundowner does provide some nuance in the dementia symptomology presented. When Peggy attempts to write a letter, she struggles to begin. She decides to instead voice record her thoughts, but her aphasic speech reveals memory loss and impaired linguistic capacity. Meanwhile, at several points in the play, Peggy sits down with a crossword and answers the clues with ease. This demonstrates the complexity of dementia symptomology. Some aspects of memory and/or language may falter while others go largely unaffected into the more advanced stages of dementia. Nevertheless, sundowning as a clinical feature does frame the performance and provides fertile ground to explore Peggy’s seeming to exist out of time. An opening voiceover from Peggy’s grandson—using an extract of Sue Lawson and Caroline Magerl’s “My Gran’s Different” (2003)—speaks to Peggy’s reality being at odds with the consensus. Hello, you’re about to meet my gran. I’m sure you’ll like her. She’s funny and she’s kind. We have fun together. When she remembers who I am. See, my gran’s different. […] Sometimes it’s like Gran’s living out of time, like imaginary world. Like when I’m in imaginary world, like when I’m Ben10, my mum sometimes joins in. This is what we have to do with Gran, too. The account of his Gran “living out of time, like imaginary world” depicts her as an anachronism and as disconnected from the perceived present time and place. However, the comparison to the speaker’s own imaginary world somewhat nor­ malises these episodes of disconnection. In the performance itself, I found the time of day and time passing difficult to discern. The work appears to stage the unfolding of one single night, because of the darkened quality of the stage—sometimes lit mostly by a desk lamp (an effect of natural light is seen only in the final scene). However, this night is stretched and manipulated, as the comings and goings of her children create the impression of days and nights passing. Does it all take place over one night? If so, why do her children visit to take her to an appointment at nighttime? Peggy herself describes being unable to “tell what is the past and what is the present” and “unable to tell what is familiar and what is foreign.” The design and structure of the work positions the audience to feel this sense of time blurring (similar to the plays discussed in Chapter 1). Additionally, the mediums of physical performance, dance, lighting, and music serve to conjure memories that layer past realities with the present. Peggy is settling into the settee with her crossword, considering her last answer, “Putting on the Ritz.” The opening of Get Out and Get Under the Moon overtakes the opera music that has played in the background of the performance thus far. Is the showtune diegetic as the opera music is? Five older women4 in black,

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sparkling, floor-length dresses walk in, clapping in time with the music. When the door opens, a pink light shines into the room from the outside. Is the pink light diegetic in the same way the desk lamp is? The dancers begin a tap routine, and the pink lighting comes up on the stage. A memory has literally danced onto stage. Peggy sits up to watch the dancers fondly. The 1928 standard is an upbeat song about a night out. Soon, three other dancers (performers who later become the daughter, son, and son-in-law) enter wearing a floor-length sparkly red dress and tuxedos and top hats. The troupe continues to perform as Peggy looks on; she sways a little, in time with the music. The opera can still be heard at times, though faintly, underneath the dance tune. The simultaneity of the two pieces of music evokes layered realities: that of the consensus of reality, and that of Peggy’s memory intruding on the present in a way that is as real to the audience as Peggy’s living room. The three younger dancers then bring Peggy into the routine: the men perform lifts with her. She has now stepped into the memory and become more than a spectator. As the number comes to an end, the five ladies in black exit, dancing, followed by the woman in red and one of the men in tuxedos. The second man is still dancing with Peggy, and he spins her out to land back on the settee. As the last of the dancers exits and shuts the door, Get Out and Get Under the Moon stops abruptly and the lighting quickly changes from the bright pink to the previous homely aesthetic. The room now looks as it did before the dance number, but a smile remains on Peggy’s face as she looks around the room, as if imagining it to be more than it is. The embodied memories continue. Several times, Peggy’s young children appear as if from nowhere, using a hidden door in one of the stage walls. They disappear just as seamlessly. Peggy’s memories are represented as ephemeral in this way, as she slips between her present and past realities. When her adult daughter exits to make tea, Peggy is left alone on the settee with her crossword. Then, the son and daughter—as children—enter from a section of the wall upstage from the couch. The adult performers wear children’s pyjamas and act as young siblings playing on the floor and couch. They bring their mother into the game, tickling her sides. Peggy briefly interacts with these memories before they disappear into the wall again. The room is as it was before. This is another example where Peggy’s experience of reality disrupts the consensus of reality. Peggy looks around the empty space before she puts her hands over her eyes and counts: “17, 18, 19, 20. Coming. Ready or not.” When she cannot find them she returns to the settee, her mood now despondent. Then, her daughter appears again as a child from the wall and curls up in Peggy’s lap on the couch. Peggy strokes her daughter’s hair. In this moment, Peggy experiences a dynamic with her daughter that is more typical of a mother–daughter relationship. Other interactions between Peggy and her daughter (as adult) show a reversal of this dynamic. During an episode of distress, Peggy’s grown-up daughter enters the room and attempts to calm her mother down. (We see Peggy’s daughter doing more than her male counterpart as care partner, rather in line with Fuchs’s (2017) identification of the “older daughter as carer” plot.) The older woman

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retreats under the desk, despite the daughter’s repetitions of “Mum, it’s me.” Eventually, she is able to pull her mother into an embrace on the floor. When they stand, the daughter begins to cry. Peggy’s demeanour changes to comfort her; it is as if the last few minutes have not happened, and she performs the more typical role of a mother again. Here, her anterograde amnesia, as well as her mood lability, is evident. Her daughter helps her put her cardigan on the right way. The simple physicality demonstrates how they pass back and forth the roles of dependent and care partner. After Peggy breaks the saucer from her tea set—by pretending it is a “flying saucer”—she lies in her daughter’s lap to have her hair stroked, a perfect inverse of their earlier positions when the daughter appeared as a child. Child–parent role reversals are relatively typical for families navigating dementia (Zimmermann 2013; Rau 1991), especially where the adult child is a care partner. We see another aspect of this this when the grown daughter goes to take the bottle of scotch from in front of her mother on the writing desk, saying, “You know, you shouldn’t be drinking this, Mum,” but Peggy is quick to tell her, “Don’t treat me like a child.” People with dementia may not only experience infantilisation in formal care but also when their own adult children take on responsibilities on their behalf. These moments in dementia plays show some of the difficulty of trying to care partner a parent, trying to look after their physical health without taking away their agency and while preserving some of the original relationship dynamic. Blunt and Dowling observe that “domestic relations are critically gendered, whether through relations of caring and domestic labour, affective relations of belonging, or establishing connections between the individual, household and society” (2006, 15). Fathers are traditionally positioned to be the family’s rep­ resentative outside the home (Connell 2009, 3). The corollary is that mothers are culturally connected to the domestic space and caring roles/duties. Blunt and Dowling elaborate that: Children are presumed to be key inhabitants of ‘homely’ homes, though it is rare for children to be given any agency in the running or representation of these homes. Suburban homes are spaces of parental control and are spatially demarcated along generational lines. (2006, 115) The positioning of children in the home in this way is subverted in per­ formances that stage care in the family home. In turn, the parent with dementia loses some agency in their home and the “spatial demarcation” is broken down. Embodied yet ephemeral The embodied memories onstage could be considered an interruption of reality, or one reality layered over another. The joyous mood of the Get Out and Get Under the Moon number leans towards the latter, particularly with the opera music

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still present in the scene—albeit faintly. Moreover, her grandson’s acknowl­ edgement of theatre and music as two of Peggy’s loves sets this recollection up to be a happy one. This rosy aspect of dementia is literally given a rose tint with pink stage lighting. The memories of Peggy’s children as kids are somewhat more private and sedate scenes. These encroaching, fleeting memories are both em­ bodied and ephemeral. Instead of Peggy speaking these into existence or alluding to a flashback, they are present with her onstage, at level with the set, the tel­ evision, the books. Yet, theatre performance, in its liveness and inherent impermanence, communicates well the ephemerality of memory. Jane’s dementia: Doctor’s visits and erosion Jane’s cognitive impairment is first exhibited in a monologue delivered as she leads a group of bed-and-breakfast visitors on a coastal walk. During this speech, Jane has a moment of nominal aphasia, forgetting word “tide.” This first sign of her dementia is made particularly discernible amid the longest and most fluid stream of verbal communication in the play. At first she fumbles for the word, repeating herself, but then takes a long pause, before attempting circumlocutory discourse5: “the … water, the high – the low … (shouting) TIDE,” and eventually she locates the word (Holum 2016, 25). Another clinical signpost is presented in the next dialogue scene. This time, Jane is struggling to make out the word “partial” as she reads a letter, thus demonstrating alexia. After these occurrences of Jane’s fragmenting cognition, she makes several visits to a disembodied doctor represented by voiceover. Jane first goes to the doctor’s alone; at the following doctor’s visit, Victoria is with her and witnesses her difficulty in answering the questions. An interrogatory bright light accom­ panies the disembodied voice, which systematically asks: what sort of building is this; what floor are we on; what season is it; can you remember the words: tree, house, ball; what day is it today; what time is it; what is 92 minus seven, and minus seven again, and so on; what does this picture show; what is world spelled backwards; and what are the three words I asked you to remember? (Holum 2016, 30–32, 34–38). Lastly, the doctor requests that Jane repeat a sequence of basic physical gestures. In the first instance, Jane answers the questions quite confidently, faltering only at 71–7, and misspelling WORLD backwards as DLRWO. These questions correspond with the standardised tests to gauge the stage of dementia. This type of examination is likely familiar to anyone who has visited a doctor about Alzheimer’s disease and acts as a clear indication of Jane’s condition without the words “dementia” or “Alzheimer’s” ever being uttered in the play. Jane’s responses during the second and third visits reveal her accelerating decline. A brain scan, a familiar emblem, is projected behind the two women at the end of the final doctor’s visit. It is a visualised diagnosis. This type of image has foundations in the medical construction of dementia, yet is persistently associated with dementia in the Western cultural understanding of the condition.

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The questioning and the visuals would likely resonate with many. However, their experiences with the healthcare system are not addressed so explicitly as in plays such as Feehily’s This May Hurt a Bit or in Brian Daniels’s Fighting for Life (Chapter 3). Moreover, their sexuality is not addressed in the play: they are a same-sex couple and there is nothing more to it. The reality is not so simple for many real-life same-sex couples. Rachael Dixey, whose experience inspired Brian Daniels’s Don’t Leave Me Now, calls out the “perception that gay re­ lationships are not as significant as straight marriages” (quoted in Alzheimer’s Society UK n.d.). She shares that when she chose a nursing home for her partner Irene, “the manager told me some of the staff had been worried that a lesbian was arriving” (quoted in Alzheimer’s Society UK n.d.). This fear is voiced by the character Caroline in Cracked: New Light on Dementia (2014, Julia Gray). As she explains to her brother the delicateness of the choice to put someone into care, she worries: “If Alex and I were to move into a facility like that, would we even be acknowledged as a couple? Would we even be allowed to be together? Would we have to go ‘back into the closet’?” (Collective Disruption 2017, 110). Further, much of the research on domestic care dyads “has predominantly explored the experiences of heterosexual spousal carers” (Peel 2016, 211). More recently, Linn Sandberg and Barbara Marshall re­ cognise “signs of a growing interest in bringing gerontology into dialogue with feminist, queer and crip theories to critique socially-constructed binaries and embrace diversity in aging experiences and identities” (2017, 2). Bringing more queer perspectives into dementia studies—whether clinical, social, or narrative research—would yield great benefits for understandings of dementia experiences. Natural disaster metaphor Beginning to take on the role of care partner, Victoria reads from a pamphlet with tips for managing dementia (while the management of the coastal erosion is out of their hands): “You may lose control of your movement … You may start to feel the cold more acutely. Oh, you need to wear a lot of layers.” Jane responds in line with the predominant association of dementia to old age: “Like an old person. Isn’t it what old people get? I’m 41, Vic” (Holum 2016, 39–40). I must digress here to address the younger-onset dementia featured in this play as well as in Sundowner. Dementia is most commonly associated with ageing and, therefore, its stigmatisation, biomedicalisation, and representation are closely asso­ ciated with ageism. However, younger- or early-onset dementias do exist, though cases are far less common. The choice to pen a narrative about younger-onset dementia is sometimes seen as reflecting ageism and tied to the “brilliant sufferer” trope (Chapter 3). Younger-onset dementias also feature in Grandma Remember Me? (2012), The Gravitational Pull of Bernice Trimble (2013), The Visitors (2013), Still Alice (2013), Plaques and Tangles (2015), and Don’t Leave Me Now (2014). Clinically

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speaking, in its younger-onset form, Alzheimer’s disease is known to advance more quickly, making the erosion analogy more genuine, less hyperbolic. Interestingly, unlike the other performances in this book, 1 Beach Road did not begin its devel­ opment as a story about dementia. RedCape Theatre become aware of a coastal community in the UK whose homes were at risk of falling into the sea. The work, therefore, began with the erosion as its central plot. While devising, the creators felt that audiences would perhaps engage better with a more universal and personal story. Thus, dementia became the central plot and coastal erosion its allegorical parallel. Among the most popular analogies for dementia experiences (see Introduction chapter), natural disasters evoke notions of inevitable devastation, family upheaval, and the unrelenting power of mother nature, too overwhelming to evade. Typically, natural disaster metaphors refer to a collective dementia ex­ perience, that is, the tsunami is about the scale of dementia as the population ages (Zeilig 2014). Here, a natural disaster analogy—specifically coastal erosion—is localised to this one household (and small business). The correlation between the eroding coastline and the “falling away” of Jane’s cognition is expressed implicitly, though each is a threat hanging over the couple’s home. When their home begins its descent towards the sea, Jane’s dementia parallels the erosion. 1 Beach Road’s narrative depends on the environment to be rich so that its attrition is impactful. The 1 Beach Road set is more abstract than Sundowner’s. The world, the embodied diegesis, in 1 Beach Road is constructed mostly of wood and sand. A sizeable adaptable wooden structure creates a flexible environment: it is a café, a home, a spot on a coastal walk, and a boardwalk. 1 Beach Road blurs a domestic interior with an outside environment. So, even before Jane’s diagnosis, place and setting in 1 Beach Road is flexible from the play’s opening. The 1 Beach Road set is overwhelmed by sand and various props that vacillate between function and detritus, to complement the overarching metaphor of erosion. This world features Victoria and Jane alone as live actors. Any other characters are transient and represented through object theatre (or voiceover, as the doctor), so that objects and even people—portrayed by empty clothing—embody ephemera. The stage covered in sand and littered with household objects presents a similar visual to David Megarrity’s The Holidays (2020). A mother, father, and their son, Oliver, arrive at Grandad’s house, a beach shack. The grandfather has recently gone into hospital, his dementia advancing. The family move through the house to find “everything’s underneath everything” (Megarrity 2020, 20); there are paintings everywhere, sheets cover most surfaces, and the family gradually find plates all over the house, including one in the toaster. Without an especially crowded set, the play manages to evoke a sense of chaos that the home has fallen into. Not to mention, sand is everywhere. Mum seems to be constantly sweeping throughout the next few scenes. Oliver picks up a pair of slippers to find them full of sand. Like 1 Beach Road, The Holidays’ set is also a versatile one,

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using projection and other theatrical resourcefulness to evoke different places. When Dad eventually tells Oliver what’s going on—why they are there to visit Grandad’s house and why Grandad has not been there—Oliver insists to his father that he understands well enough what is happening to his grandfather: “If his mind is like sand, then waves are washing it away. Pause. That was a meta­ phor” (Megarrity 2020, 54). 1 Beach Road makes use of metaphor and visual symbols throughout. Scale is used in 1 Beach Road to draw the audience further into the story and to oversee the erosion. Twice during the work Jane sits alone with a small pile of sand, building cliffs or houses of sand. In the first instance, she walks her fingers along the cliff before “bulldozing” it off the set (a motif of precariousness that is echoed later when Jane herself hangs from the side of the cliff). This small and simple movement sequence brings the erosion into the domestic space. In this way, the erosion ceases to be exterior. Another feature of note in this moment is Jane’s solitariness; it depicts her private struggle, grappling with her imminent decline. Perhaps in this moment, Jane seeks to invert the power between herself and the erosion, where she plays (indiscriminately destructive) mother nature. I have written previously about human–object relationships in theatre about dementia (Batch 2020), including those in 1 Beach Road. There, I argue that human–object relationality is one vehicle for firstly presenting clinical markers of dementia and secondly for transcending mimetic function to embody metaphor or memory or bring imagination to life onstage. During 1 Beach Road, Jane increasingly struggles with agnosia, the inability to name basic, everyday objects (Howes 2007, 346), which occurs in the later stages of Alzheimer’s disease (Osimani and Freedman 1991, 28). More than that, the objects in the play move between mess and order, in parallel with Jane’s condition, thus embodying the disarray of their home caused by both erosion and dementia. Additionally, ev­ erything is sand-coloured, including their clothing, entrenching Jane and Victoria in the setting of the erosion, in danger of being figuratively swept or washed away. Sand infiltrates the entire set; it is poured out of shoes, teapots, and teacups. Despite being swept around the set during the performance, the sand on the stage cannot be swept away, much like the theory of the Alzheimer’s-affected brain’s inability to clear the build-up of proteins. This build-up forms obstructing plaques along with tangles that cause nerve cells to collapse (de Rover et al. 2008).6 While the physical aesthetic of the work makes reference to dementia, it also embodies ephemerality and detritus. Notions of the ephemeral are relevant to the theme of memory loss, while detritus serves the natural disaster analogy. Throughout the work, certain props are slipped through the cracks in the wooden structure while others are swept underneath. Empty clothing draped over chairs or hung on the clothesline embodies the guests at the bed-andbreakfast; they, too, seamlessly appear and disappear. In this way, the objects—in their interaction with the broader set design and the pervasive sand—represent both ephemerality and detritus.

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Embodied relationships Jane’s experience of her dementia is largely represented through the embodied metaphor of detritus that also physically/visually/metaphorically transforms the domestic space. Her dementia is embodied in not only the symptoms, but the effect on her relationship. As is typical of younger-onset Alzheimer’s, Jane’s progression is quick and Victoria struggles to maintain her relationship with Jane as both lover and care partner. Victoria’s experience of the dementia is com­ municated in her dialogue, which demonstrates increasing frustration and struggle with their reconfigured relationships. Her diminishing conversation with Jane indicates how the relationship is shifting. As the play approaches the end, Victoria speaks aloud to Jane, while the latter is offstage, accentuating the increasing lacunae in her life. Later, in a moment of frustration, Victoria tells Jane directly: “You’ve already gone Jane. You’re not here anymore” (Holum 2016, 48). This suggestion of Jane’s “absence” is in keeping with predominant narra­ tives of dementia. Moreover, as is typical of many dementia narratives, the play increasingly explores Victoria’s experience as care partner. The domestic space is transformed for Jane and Victoria because their dynamic is changing, and their home is in danger of sliding into the sea. Peggy’s domestic space is transformed by her dementia symptomology—as Jane’s is—but instead of a shifting spousal relationship, the play sees the return of her children and their presence as care partners with renewed agency in the domestic space (Blunt and Dowling 2006). Both Sundowner and 1 Beach Road represent the relationships between the character with dementia and their family in physical, embodied ways, that is, in physical representations of relationships, beyond dialogue. The changes in Jane and Victoria’s relationship are embodied onstage. Jane and Victoria’s relationship begins to show changes during a repeated night-time sequence. As the women change into pyjamas and go to bed, a video of Jane in the orange swimming costume is projected behind them above the bed. In the video, Jane walks a tightrope, back and forth. On the stage, Jane rises from the bed to turn on a light, before climbing into bed again. Victoria then rises to turn off the light and lies down again. Both slip off the bed—a tilted part of the wooden set structure—and then return to the bed to begin the night-time routine again, starting with donning pyjamas. During the second iteration of the sequence, both women appear in the projected video, both walking the tight­ rope. As the sequence is repeated, Jane does up her buttons with increasing difficulty; by the third round, Victoria has to assist her. The sequence comes to an end when Jane leaves the bed to go out into the night. The sound of howling wind begins to overcome the music that has accompanied the scene. Realising Jane has disappeared, Victoria goes to the window and yells her name over the wind. The final image of the scene is Jane, having reached the edge of the structure, hanging from a ledge.7 The allusion to the edge of a cliff reiterates the central erosion analogy and shows Jane at risk of being washed away. The

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projected video of the tightrope also suggests a sensation of teetering on an edge. Jane begins the walk alone and then Victoria joins the precarious walk—a shared struggle. The mimed night-time routine demonstrates both restlessness and the passage of time, exhibiting the couple’s shared experience. Sundowner also stages a physical scene that demonstrates Peggy’s dependency on her grown children. In an episode of panic, Peggy has crawled under her desk. She then moves to the middle of the stage and lies on the floor and per­ forms a movement as though being slowly washed around by waves (Figure 4.2). The soundscape of simple piano and slow strings complements this movement. The light over her turns a harsh bright white. Two men appear behind the back curtain and perform a movement sequence with the physicality of stacking, of weighing on one another and picking one another up, a dance of dependency and interdependency. The music continues, but the scene behind the curtain

Figure 4.2 Sundowner. The actor Helen Morse lays on the stage floor. She has brown hair, worn out. She is wearing a grey cardigan over a patterned dress. Her shoes are lace-up sneakers. Her arms are lifted above her head and she looks as though she is being rolled around, as if by waves. Behind her, at the back of the stage, two men (played by Gerard Van Dyck and Stuart Christie) are seen through a screen. They wear grey singlets and grey shorts. They are holding hands, leaning or pulling away from one another. Their knees are bent, and one is almost touching the floor as he leans away from the other. The stage floor shows some evidence of a previous scene: Some pieces of shiny red confetti remain. Photo credit: Jeff Busby.

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ends. Peggy is curled up into the foetal position on the floor. The five older ladies in their black sparkly attire enter again and this time gently help Peggy to her feet. They slowly dance around her as Peggy watches them and attempts to follow their movement. They circle around her, still in a dance, moving closer with a sense of support and community. They slowly exit to be replaced by the three adult children. Peggy performs with each one in paired movement that involves lifting and leaning; Peggy is the dependant in each pairing. When the three grown children leave the stage, Peggy is briefly left in the spotlight. When the light changes and the music fades out, she is alone and the room has not changed. The transition again demonstrates the transience of Peggy’s interactions and the mercurial nature of her experience of reality. Endings and the “right kind” of dementia story Both Sundowner and 1 Beach Road contain an undressing motif as part of their respective denouements, a motif that also features in It’s Dark Outside (as dis­ cussed in Chapter 5). In the beginning of 1 Beach Road’s denouement, Jane has forgotten Victoria, which signals a significant advancement of her dementia. The actor playing Jane removes her clothing and drapes it over a chair as if she were sitting there. Now, Jane is embodied as the guests to the bed-and-breakfast have been, passively, and as ephemera. The actor leaves the stage in a swimming costume. Victoria lays her head where Jane’s lap would be before she packs the clothes into a suitcase. This may signify that Jane is simply moving into long-term care, but this is not confirmed. The performance finishes with Victoria sitting on the wooden set as Jane is seen behind a transparent screen, performing an aerial movement that emulates swimming down into the sea. This ending is especially significant considering that early dialogue disclosed that Jane cannot swim. In this way, the swimming conflicts with the image of the suitcase. It is, therefore, unclear as to whether this ending marks the advancement of Jane’s dementia or her death. The closing of the work demonstrates the apparent perplexity of ending a performance about dementia and resolving the central character arc in particular. 1 Beach Road’s ending sees Jane go from active embodiment to passive embodiment in an ambiguous end to her story. The final part of Sundowner begins with a letter left for Peggy’s children. Both grown children enter and sit on the settee with the found letter and read silently. Peggy recites the letter from her desk. The audience has heard passages of the text before, but this time it is read fluently, as the children may imagine it spoken: My dear ones, it’s the strangest thing, no longer being able to tell what is the past and what is the present. It seems that events that took place only minutes ago are now being erased. While memories I have been able to hold at bay for decades suddenly come rushing towards me. No doubt it is only going to get worse. At times now I am unable to tell what is familiar and what is foreign. And that is

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why I’m writing to you today. When it comes to pass, that I can no longer hold the memory of who I used to use, will you hold it for me? […] P.s when you are with child, please cherish the memories you make together. That child of yours will live with those memories for a lifetime. Peggy’s letter expresses her experience of past and present blurring. She also shares her experience of the un/familiar dichotomy. An additional binary is evoked: she describes her memories in terms of both erasure and inundation, “rushing towards” her. She also asks her children to hold onto her memory for her. This request undercuts notions of erasure. The letter feels like a good-bye but, like 1 Beach Road, the ending is ambiguous and demonstrates a struggle to end the story in a way that would satisfy an audience’s desire for catharsis. The children hug and leave the room through the back wall at stage left, as the younger manifestations of their characters have previously done. Peggy takes off her dress and from her desk removes a red box containing a sparkly black dress. As she puts it on, the five older women return to the stage in their matching black dresses. The initial undressing is an action of undoing, but the re-dressing is symbolic of a new phase of Peggy’s life. Taken together, the actions embody a demarcation within her dementia, as opposed to a delineation between a predementia self and self with dementia. Once her dress is fastened, her hair is pulled up, and earrings and lipstick are put on, a small boy has entered with an atlas and a plate of biscuits. She walks with him upstage as the back wall of the stage opens out to an outdoor scene: a small backyard with a green lawn and a wicker chair. The stage becomes flushed with daylight in contrast to the performance’s previous nocturnal aesthetic. Peggy sits in the chair and the boy sits on the ground in front of her. They each have a biscuit, and the boy’s voiceover resumes, creating a bookend with the opening scene. While this ending emphasises a generational discourse—as can be typical of dementia narratives—it does not shift the focus from the pro­ tagonist with dementia. Despite the progression of Peggy’s dementia, daylight now shines onto the stage where it has not before. The ending signals a new beginning, or a new phase of life, as opposed to a tapering off. The ending of Sundowner is crucial to the positioning of dementia and the central character. In my reading, her completion of the letter to her children and, more markedly, her donning of the black, sparkly dress—to match the older ladies around her—is an acceptance of her dementia. Her submission is not tragedised. When her grandson enters, the back of the set opens up magically like a storybook to reveal the sunny exterior that contrasts greatly with the indoor setting that has anchored the performance until now. The closing of the work speaks to Emma Naylor and Linda Clare’s (2008) study into a person’s sense of identity over the course of dementia. They explain that while a “[s]ense of identity is thought to be closely related to autobiographical memory […, r] educed awareness may serve a protective function against the threats to self posed by the onset and progression of dementia” (Naylor and Clare 2008, 590). In a

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study of 30 participants with common forms of dementia, the researchers dis­ covered a stronger sense of identity in those with lower awareness and poorer autobiographical recall for mid-life events (Naylor and Clare 2008). This is at­ tributed to a reduced “degree to which sense of identity is challenged by per­ ceived changes in ability and functioning” (Naylor and Clare 2008, 604). Before this shift occurs in people with dementia, their ailing cognition perpetually contests their sense of identity and, by extension, selfhood. The reflection of this theory in Sundowner alleviates the subject matter from a narrative of tragedy. Conversely, in Janet Gibson’s interpretation, “Sundowner reinforces the ‘right kind’ of story, one of tragedy and loss” (Gibson 2020, 168). To the creative team, the [five older women played by the Tivoli] Lovelies represent death or the passage towards death (Denborough 20 August 2018b). In one scene we see them calling Peggy, welcoming and embracing her (ibid.). And the directorial intent was that when Peggy dons a Tivoli Lovelies dress, it is to represent her passing into a different, unimaginable realm. Denborough saw the last scene as about [the grandson] Spike’s memory of Peggy or perhaps their last memories of one another or what they would have wanted the memory to be. (Gibson 2020, 166) Herein lies part of the power and precariousness of theatre about dementia, especially where representation is symbolic and meaning is not prescribed: conflicting interpretations may emerge. This reinforces the importance of ana­ lysing these works for their multiple potential meanings. Without my knowledge of the creators’ intentions, I found Sundowner to be an outlier of the works identified in this study, seeing a moment of demarcation within Peggy’s dementia that accepts the advancement of the condition. According to my reading, while Sundowner’s undressing signals a transition and acceptance, the undressing in 1 Beach Road is part of a more abstract transition that implies a character’s departure. These physical, embodied endings mitigate the need to explain what has happened to the character with dementia, or the need to address the decision to move someone into a care home, or to address death at home. Endings may transform a home from homely to unhomely, because deaths simply do not happen in a homely home (at least as per the dominant cultural norms). Formal care goes almost completely unmentioned in both these plays. Ambiguity aside, the undressing motif relates to representations of dementia as an erasure. I believe the endings of dementia narratives are as important to investigate as any aspect of a text. Endings reflect how we feel about dementia’s resistance to resolutions to illness narratives that produce catharsis. Notably, the theatrical undressing is a device that would not necessarily carry the same symbolism in other media. The hypermediality of theatre and the higher threshold for suspending disbelief means that non-mimetic and non-verbal sig­ nification can embody important meaning.

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Notes 1 For my analysis of Sundowner, I had access to a video recording of the work. I also looked over the education pack created by Meg Upton. Janet Gibson also writes about Sundowner; though I considered her analysis, we each take a different approach to the performance. 2 Although no one is given a name within the performance—only familial titles, including “Gran” and “Mum”—several reviews, media releases, and an education resource pack name the central character Peggy and the grandson Spike ( Upton 2012; Gibson 2020). 3 I personally encountered 1 Beach Road in both script form and as a video recording. I also spoke to Cassie Friend (co-director and performer) and Catherine Dyson (per­ former) about the work in 2017. 4 The five older women are “the Tivoli Lovelies, a tap-dance ensemble of five women, all of whom had performed at The Tivoli in Melbourne when younger” ( Gibson 2020, 134). 5 Circumlocutory discourse is a compensatory measure for aphasia. As Nancy Harding and Colin Palfrey (1997) explain, circumlocution is a description of a thing’s function in lieu of its name. 6 However, the significance of plaques and tangles in Alzheimer’s disease pathology continues to be debated. For example, some studies have found subjects with plaques and tangles characteristic of Alzheimer’s disease yet no clinical (that is, behavioural) symptomology. See Lock’s book (2013), especially Chapter 1, “Making and Remaking Alzheimer Disease,” for a fuller discussion. 7 Nicola Wilson’s Plaques and Tangles ( 2015) also features a surreal scene that ends with the central character, Megan (who also has younger-onset dementia), “teeter[ing] on the edge of a cliff. The sound of baying wolves grows louder and louder” ( Wilson 2015, 54).

References Alzheimer’s Society UK. n.d. “Being in a same-sex relationship with a person with dementia.” Alzheimer’s Society UK. https://www.alzheimers.org.uk/get-support/ publications-and-factsheets/dementia-together/same-sex-relationship-dementia-carer Batch, Morgan. 2020. “Dementia in dramaturgically hybrid performance and the perform­ ance of objects.” Performance Research 25 (4): 65–73. doi: 10.1080/13528165.2020.1842033 Batch, Morgan and Mark David Ryan. 2023 (submitted). “Exploiting gerontophobia and the monstrous feminine: The representation of dementia in contemporary horror movies.” New Review of Film and Television Studies. 14 September. Beard, Renée L., Sasha Sakhtah, Vanessa Imse, and James E. Galvin. 2012. “Negotiating the joint career: Couples adapting to Alzheimer’s and aging in place.” Journal of Aging Research 2012: 1–12. doi: 10.1155/2012/797023 Bitenc, Rebecca A. 2020. Reconsidering dementia narratives: Empathy, identity and care. Routledge. Blunt, Alison and Robyn Dowling. 2006. Home. Routledge. Brown, Jeremy and Jonathan Hillam. 2004. Dementia: Your questions answered. Churchill Livingstone. Collective Disruption. 2017. “Cracked: New light on dementia.” In ReView: An anthology of plays committed to social justice, edited by Julia Gray, 67–138. Sense Publishers. Connell, Raewyn. 2009. Gender: In world perspective, 2nd ed. Polity Press.

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Creed, Barbara. 1993. The monstrous-feminine: Film, feminism, psychoanalysis. Routledge. de Rover, Mischa, Sharon Morein-Zamir, Andrew D. Blackwell, and Barbara J. Sahakian. 2008. “Cognition and ageing: Dementia.” In Handbook of developmental cognitive neuro­ science, 2nd ed., edited by Charles A. Nelson and Monica Luciana, 607–619. MIT Press. Elton, Trevor. 2008. “Preventing a fate worse than death: Dementia prevention in 2008.” Canadian Pharmacists Journal 141 (5): 271–272. doi: 10.3821/1913-701X-141.6.e9 Fuchs, Elinor. 2017. “Dementia: The theater season’s ‘in’ disease part 1.” The Theatre Times, 16 January. https://thetheatretimes.com/dementia-theater-seasons-disease-part-1/ Fuchs, Thomas. 2020. “Embodiment and personal identity in dementia.” Medicine, Health Care and Philosophy 23 (4): 665–676. doi: 10.1007/s11019-020-09973-0 Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Graham, Lindsay T., Samuel D. Gosling and Christopher K. Travis. 2015. “The psy­ chology of home environments: A call for research on residential space.” Perspectives of Psychological Science 10 (3): 346–356. doi: 10.1177/1745691615576761 Harding, Nancy and Colin Palfrey. 1997. The social construction of dementia: Confused pro­ fessionals? Jessica Kingsley Publishers. Hawker, Philippa. 2012. “Fading memories given bright focus.” Sydney Morning Herald, 7 May. https://www.smh.com.au/entertainment/fading-memories-given-bright-focus20120506-1y6sr.html Heddon, Deirdre. 2008. Autobiography and performance: Performing selves. Palgrave Macmillan. Holum, Solveig. 2016. 1 Beach Road. Turtle Key Arts. Howes, Mary B. 2007. Human memory: Structures and images. Sage. Hughes, Julian C. 2001. “Views of the person with dementia.” Journal of Medical Ethics 27 (2): 86–91. Innes, Anthea. 2009. Dementia studies: A social science perspective. Sage. Kitwood, Tom. 1997. Dementia reconsidered: The person comes first. Open University Press. Kontos, Pia C. 2003. “‘The painterly hand’: Embodied consciousness and Alzheimer’s disease.” Journal of Aging Studies 17: 151–170. doi: 10.1016/S0890-4065(03)00006-9 Kontos, Pia C. 2004. “Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease.” Ageing & Society 24: 829–849. doi: 10.1017/S0144686X04002375 Kontos, Pia C. 2005. “Embodied selfhood in Alzheimer’s disease: Rethinking personcentred care.” Dementia 4 (4): 553–570. Lock, Margaret. 2013. The Alzheimer conundrum: Entanglements of dementia and ageing. Princeton University Press. Logsdon, Rebecca G., Linda Teri, and Sue M. McCurry. 2006. “Non-pharmacological treatment of severe dementia: The Seattle protocols.” In Severe dementia, edited by Alistair Burns and Bengt Winblad, 177–183. John Wiley & Sons. Megarrity, David. 2020. The holidays. Playlab Theatre. Milligan, Christine. 2003. “Location or dis-location? Towards a conceptualization of people and place in the care-giving experience.” Social & Cultural Geography 4 (4): 455–470. doi: 10.1080/1464936032000137902 Mitchell, Gail J., Sherry Dupuis, and Christine Jonas-Simpson. 2011. “Countering stigma with understanding: The role of theatre in social change and transformation.” Canadian Theatre Review (146): 22–27. doi: 10.1353/ctr.2011.0029

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Molloy, D. William and Rosemary Lubinski. 1991. “Dementia: Impact and clinical perspectives.” In Dementia and communication, edited by Rosemary Lubinski, 2–21. B.C. Decker Incorporated. Naylor, Emma and Linda Clare. 2008. “Awareness of memory functioning, autobio­ graphical memory and identity in early-stage dementia.” Neuropsychological Rehabilitation: An International Journal 18 (5): 590–606. doi: 10.1080/09602010701 608681 Oberg, Peter. 1996. “The absent body: A social gerontological paradox.” Ageing & Society 16 (6): 701–719. doi: 10.1017/S0144686X00020055 Odzakovic, Elzana, Ingrid Hellström, Richard Ward, and Agneta Kullberg. 2020. “‘Overjoyed that I can go outside’: Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.” Dementia 19 (7): 2199–2219. doi: 10.1177/1471301218817453 Osimani, Alicia and Morris Freedman. 1991. “Functional anatomy.” In Dementia and Communication, edited by Rosemary Lubinski, 22–36. B.C. Decker Incorporated. Peel, Elizabeth. 2016. “‘It has had quite a lot of reverberations through the family’: Reconfiguring relationships through parent with dementia care.” In Revaluing care in theory, law and policy: Cycles and connections, edited by Rosie Harding, Ruth Fletcher, and Chris Beasley, 198–214. Routledge. Rau, Marie T. 1991. “Impact on families.” In Dementia and communication, edited by Rosemary Lubinski, 152–167. D. C. Decker Incorporated. Rindlisbacher, Peter and Robert W. Hopkins. 1992. “An investigation of the sun­ downing syndrome.” International Journal of Geriatric Psychiatry 7: 15–23. doi: 10.1002/ gps.930070104 Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Sandberg, Linn J. and Barbara L. Marshall. 2017. “Queering aging futures.” Societies 7 (3): 1–11. doi: 10.3390/soc7030021 Shyamalan, M. Night. 2015. The Visit. Blinding Edge Pictures and Blumhouse Productions. Upton, Meg. 2012. Sundowner: Teacher’s notes and learning experiences for secondary and tertiary students. https://www.bmec.com.au/images/Education/Secondary/Sundowner-EducationPack.pdf Wilson, Nicola. 2015. Plaques and tangles. Faber and Faber Limited. Zeilig, Hannah. 2014. “Dementia as a cultural metaphor.” The Gerontologist 54 (2): 258–267. doi: 10.1093/geront/gns203 Zimmermann, Martina. 2013. “‘Journeys’ in the life-writing of adult-child dementia caregivers.” Journal of Medical Humanities 34 (3): 385–397. doi: 10.1007/s10912-0139233-9.

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) 27 (2011) by Abi Morgan (England) Autobiographer (2011) by Melanie Wilson (England) Cracked: New Light on Dementia (2014) by Julia Gray (Collective Disruption) (Canada)

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Don’t Forget To Remember Me (2009) by Haresh Sharma (The Necessary Stage) (Singapore) Don’t Leave Me Now (2014) by Brian Daniels (England) Dot (2015) by Colman Domingo (US) Fighting for Life (2017) by Brian Daniels (England) Grandma Remember Me? (2012) by Belinda Lazenby (England) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia) Laughter in the Shadow of the Trees (1996) by James Prideaux (US) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) Lovesong (2011) by Abi Morgan (England) Marjorie Prime (2015) by Jordan Harrison (US) Plaques and Tangles (2015) by Nicola Wilson (England) Still Alice (2013) by Christine Mary Dunford after Lisa Genova (US) Sul Concetto di Volto nel Figlio di Dio (2010) by Socìetas Raffaello Sanzio (Italy) Sundowner (2011) by KAGE (Australia) The Gravitational Pull of Bernice Trimble (2013) by Beth Graham (Canada) The Holidays (2020) by David Megarrity (Australia) The Visitors (2013) by Sean Riley (Urban Myth Theatre Company) (Australia) This May Hurt a Bit (2014) by Stella Feehily (England) Tu te Souviendras de Moi [You Will Remember Me] (2014) by François Archambault, translated by Bobby Theodore (Canada)

5

Puppetry and Dementia It’s Dark Outside and D-Generation: An Exaltation of Larks

Puppetry is an ancient form with a rich history, predating even theatre (Francis 2012) and assimilating and combining elements from various sources throughout history and across cultures. Contemporarily, their use is diverse. “Puppets are fundamentally a storytelling tool that can be used in many ways within entertain­ ment, media, political activism and therapy and other media” (Fisher 2020, 16). Puppets have also been used in dementia care settings (see Marshall 2013). Puppetry enables: discussion about metaphysics, neuroscience, emotions, anatomy and mechanics; tradition, cultural heritage, politics, narrative, child­ hood and literacy; song and religion; and almost any field you can imagine. It is a particular fusion of the material and immaterial. (Astles 2016, 54) Given its wide applicability, why is puppetry such a complex—potentially controversial—mode? As I argue here, characters with dementia can be demarcated by passive versus active embodiment, that is, puppets performing opposite live human actors. To reiterate, demarcation can (1) position people with dementia at odds with those without, or (2) delineate between the person before and since dementia. Demarcation of the first type can be manifest in performance forms, such as puppetry. As another example, the contemporary opera The Lion’s Face demarcates using speaking juxtaposed with singing. David Fuller’s description summarises this demarcation, while making a case for the audience’s identifica­ tion with the central character (with dementia). Mr. D is a speaking role: his speaking amid everybody else’s singing is a way of representing the gulf between him and the other characters, and his alienation from what, in an operatic context, is the normal discourse. It may also help the audience to identify with Mr. D: his mode of expression is theirs. (2011, 510) Fuller makes a salient point. However, one could argue that, despite this opportunity for the audience to relate to Mr D, within the medium of the DOI: 10.4324/9781003282037-9

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opera—an artform who dramaturgy normalises sung over spoken delivery—Mr D is “othered.” This way, in a puppetry and object theatre dramaturgy, the puppet as character is actively embodied in that diegesis. If, however, the dramaturgy includes both puppet and live actors, puppets take on a passivity in relation to the active embodiment of the live performer. In his seminal book, Puppet: An Essay on Uncanny Life,1 puppetry scholar Kenneth Gross describes the puppet’s “lack of life” and suggests that puppets are suited to particular characters and stories: The curious law is that the liveliness of a puppet onstage, in movement and voice, must incorporate something of the puppet’s lack of life, or its belonging to a different kind of life. The very stories that the puppets are invited to tell, or the characters they imitate, must be fitted to their puppet-ness and yet transfigure it. (2011, 69) That puppets may belong to a “different kind of life” resonates with the perceived inscrutability or otherness of dementia. Eileen Blumenthal also reflects on the ontology of the puppet subject: Puppetry is, inherently, the most transcendent mode of performance. After all, the transitions between life and non-life–birth and death–are the most sacred moments of human experience. Puppets, inanimate objects endowed with vital force, live at that border. And, along with their first cousins, effigies and masks, they often play major social and religious roles in the passage between life and death. (1997, 18) The liminal quality of the puppet is significant. Blumenthal’s more explicit positioning of puppets at the border between life and death echoes descriptions of dementia as “social death” or “living death” (Sweeting and Gilhooly 1997). Bearing in mind these references to a state straddling life and death, the use of the puppet in theatre about dementia takes on additional significance. When used to represent characters with dementia, puppetry has the capacity to demarcate them from others in the story in several ways. In addition to their object-turned-subject status, a puppet’s speech is inherently disembodied, or “alien” (Gross 2011, 66), if they are voiced at all, and they are sometimes shrunken facsimiles of the human being. Gross notes that “the puppet theater is a theater of miniatures. Things on the puppet stage are most often smaller than life, shrunken or reduced doubles of a human world” (2011, 39). When a puppet is in co-presence with live actors, this created actor is diminished by comparison. The use of “created actors” (to borrow from Blumenthal 1997) alongside human actors represents a patent demarcation between the live and those perceived to be at its edge. The use of puppetry in co-presence with live actors can be prob­ lematic, in terms of echoing prevailing Western cultural attitudes of people with

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dementia living a lesser existence and lacking agency. By its very nature, a puppet is manipulated, unable to move independently. Following a rich history, puppetry appears in a lot of contemporary theatre that seeks to employ a range of performative elements in the dramaturgy to disrupt the logocentric hierarchy of drama (Lehmann 2006). Literature about postdramatic performance describes the use and often the mix of modern technologies, such as sound recordings and effects and projection technologies (Bay-Cheng 2015; Read 2013) and “older aesthetics” (Lehmann 2006, 27), including puppetry and shadow theatre. These multiple forms may interrupt the consensus of reality in that they disrupt mimesis, or present alternate experiences of reality concurrently, as seen in Inside Out of Mind (Chapter 2). Hans-Thies Lehmann (2006, 18) also describes how postdramatic theatre has the capacity to “explore the new possibilities of thinking and representing the individual human subject” (further explored in Part 3). This necessitates questioning the puppet’s signification, what it communicates either explicitly or implicitly. Introduction to dementia puppetry works I have identified a number of puppetry and mask performances about dementia, and I am sure that others exist. I include mask performance here for the same reasons that Blumenthal describes them as “first cousins” of puppets. These are equally ancient performance technologies, and ones that give a character a static facial expression. The list of works demonstrates that the two performances in focus in this chapter are worth analysing as they represent a larger group. (Granted, many of the puppetry works about dementia come from companies who specialise in puppetry.) Puppetry works include the following: Coop (Black Hole Theatre, 2008, Australia), Grandma Remember Me? (Belinda Lazenby, 2012, England), It’s Dark Outside (The Last Great Hunt, 2012, Australia), Perish the Thought (Susan Harris, 2012, Australia), D-Generation: An Exaltation of Larks (Sandglass Theater, 2013, US), Angeleta & Etelvina (Around the Glove, 2014, England), End Games (Movingstage Marionette Company, 2015, England), Risking Happiness (Reckless Kettle, 2015, England), State of Grace (Reckless Kettle, 2015, England), Dark Matter (Vertebra Theatre, 2017, England), Ingatan (Fasyali Fadzly, 2017, Malaysia), and This is Us (2018). Mask works include the following: Dottie (Robin Marcotte, 2005, US), André y Dorine (Kulunka Teatro, 2010, Spain), It’s Dark Outside, Finding Joy (Vamos Theatre Company, 2014, England), and Tomorrow (Vanishing Point, 2014, Scotland). D-Generation: An Exaltation of Larks2 (hereafter D-Generation) is the creation of Sandglass Theater, whose performances are based in puppetry. The performance has a largely visual dramaturgy, though its script was devised using verbatim stories (Chapter 2) from a series of visits to nursing homes. Anne Basting,3 creator of the TimeSlips™ method, commissioned Sandglass Theater to produce the work.

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Members of Sandglass Theater were initially presented with transcripts from the TimeSlips™ sessions, but felt they needed to undertake the research process themselves. During their visits, they collected a number of stories prompted by stimulus images, two of which made it into the performance. D-Generation uses two types of puppetry: hand-operated puppets that interact with the live actors to stage the TimeSlips™ sessions themselves, and simple stick puppetry to stage the resulting stories. It’s Dark Outside4 is an Australian work by The Last Great Hunt. The work omits spoken language completely, bypassing dialectical denotation and the inherent power dynamic therein. The presentation modes include the following: live performers, masks, puppetry, shadow theatre (using both puppetry and the silhouettes of live performers), and video projection. These theatre technologies are layered; shadow work is paired with projection, projection with live action, puppetry with lit objects, and so on. Sonically, they use music and liberal sound effects that accrue a perpetual soundscape. In this way, the work contains visual and auditory “languages” though it lacks linguistic denotation. The older man in It’s Dark Outside is portrayed variously by a masked actor (who adopts a stereotypically aged physicality), by a smaller puppet, by an even smaller shadow puppet, and in projection. Despite the precariousness of outsourcing the representation of a character with dementia to object theatre, as I will illustrate, the encompassing environment of It’s Dark Outside liberates the character from demarcation. It’s Dark Outside: Visual theatre and another dementia metaphor The story of It’s Dark Outside is a unique one in the landscape of dementia performance: an older man goes outside and becomes wrapped up in an old western-style adventure. The adventure narrative re-contextualises the experi­ ence of dementia, namely the associated memory loss, disorientation, and wandering. Katherine Brittain et al. make the crucial distinction between walking—“usually represented as something purposeful, meaningful and healthy”—and wandering, which “is seen as something threatening that needs managing” (2017, 270). As such, some consider the term “wandering” outdated. Within a biomedical frame, “wandering” can endorse the idea that dementia “collapses” the mind–body divide, where the body apparently takes over the mind (Brittain et al. 2017, 282). In this way, the biomedical model affords an insufficient perspective, because “to speak of [ … dementia] symptoms solely in terms of the dualist categories of mind and body is to perpetuate something of a misunderstanding of the lived experience of dementia” (Phinney and Chesla 2003, 297). While a person with dementia remains in their own home, family members and care partners can become concerned about wandering, to the point that they restrict the person’s agency and their time spent outdoors (Brittain et al. 2017). Yet, there is an argument to make that wandering is a demonstration of an “embodied way of ‘being-in-the-world’” (Kontos 2004, 829). Jayne Lloyd

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(2019) describes a project in which she performed the walking (wandering) of residents in dementia care settings. Lloyd reinterprets the wandering as per­ formance to challenge the presumed aimlessness with which people with dementia walk. Recontextualising dementia symptoms is important; many have argued that behaviours typical of dementia, while often dismissed as being merely symptomatic, may actually be rational responses to the person’s environment. Similarities can be drawn between It’s Dark Outside and Elizabeth is Missing (Healey 2014), a novel about a woman’s dementia, reframed by a mystery nar­ rative. Additionally, Dana Walrath’s memoir in graphic novel form, Aliceheimer’s: Alzheimer’s through the Looking Glass (2013) “conjur[es] up an alternative visual and textual world” to tell the story of her mother, Alice. Walrath uses the analogy of Lewis Carroll’s Alice’s Adventures in Wonderland (1865) to illustrate dementia as a journey into a new world and “cultivates alternatives to the bio­ medical and cultural figurations of AD” (Venkatesan and Kasthuri 2018, 61). In It’s Dark Outside, too, the various forms that overthrow the logocentric tradition of drama also privilege those experiences that cannot be expressed verbally. Instead, the audience is engaged by a rich visual dramaturgy and less likely to problematise the unorthodox adventure. The work’s technologies are so well integrated that at times it is difficult to distinguish shadow work from prerecorded projected content. Similarly, the live action on the stage—including puppetry—engages with the content on the screen. Overall, the performance technologies create a comprehensive environment, creating effective foundation for a non-realistic diegesis. The scenes move between the older man, who is losing memories along his journey out into the night, and the antagonist, a cowboy figure with a large butterfly net who is consistently seen in silhouette. It’s Dark Outside is an anomaly among the catalogue of identified perform­ ances that are typically staged in places of home, whether the domestic or care home. Staging a dementia narrative in an outdoor setting is significant, both for its rarity and the implications of an inside/outside dichotomy. If the concepts of “home” (Chapter 4) and the “inside” are related to notions of safety and familiarity, then “outside” conveys sentiments of risk and the unfamiliar. Ideas about people with dementia venturing outside are commonly pathologised as “wandering” and getting lost (Odzakovic et al. 2020), dialectically removing agency from the person. This thinking also exemplifies what Kontos has iden­ tified as a passive treatment of the body of a person with dementia, “rather than active and intentional” (2005, 553). Odzakovic et al. (2020, 2200) explain that the number of people with dementia who live alone necessitates “research that helps us to understand what enables people with dementia both to remain at home and stay engaged with their neighbourhoods.” There is a parallel, I believe, between the underdeveloped research in this space and the dearth of dementia narratives that predominantly take place outside the domestic home or nursing home. Other stories that do explore the outside can tend to emphasise its per­ ilousness for people living with dementia. For example, Jack & Jill and the Red

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Postbox represents the un/familiar of the outside, when Jill leaves the house without a care partner, arrives at the post office, and becomes distressed when she cannot remember what she needs there. Compare that to this man’s agency in It’s Dark Outside in which the adventure themes at play reframe the usual conno­ tations of inside/outside. The first scene does begin in the man’s kitchen and it establishes his dementia by way of anterograde amnesia. It is apt that the man’s dementia is signalled to the audience in this domestic setting. The man has a cup of tea, but when he sets the cup back down, a performer in black emerges from behind the table and moves the cup along the table slightly, away from the man. The man reaches for the mug, but when it is not where he left it, he turns swiftly, accusingly towards the cup. The music picks up as the sequence continues: the cup moves, the table moves, the chair moves, the mug is replaced by object after miscellaneous object. The man becomes frustrated and knocks the last object off the table; he goes behind the table to pick up the broken mug. This sequence is a non-naturalistic embodiment of anterograde amnesia, as well as an indication of difficulty with completing everyday tasks independently as Mischa de Rover et al. (2008) explain. The night-time aesthetic suggests that the man is experiencing diurnal rhythm disturbances and/or Sundowner’s syndrome. (Incidentally, the dark set is appropriate for the projection, shadow puppetry, and lit objects used in the work.) When the aged man first walks out into the night—at this point depicted in projection and shadow puppetry—he passes houses and streetlamps that gradually turn into gnarled trees, transitioning from a familiar, urban environment to a wild landscape. The outside setting is also appropriate for the externalisation of dementia in the performance, represented as a hunter antagonist. Often, the silhouette of the cowboy looms into view. The antagonist figure is next seen in silhouette, yet larger than life, 20 times larger than how the protagonist had previously appeared in shadow puppetry. The pervasive use of projection and shadow puppetry is apt for the play’s narrative. Penny Francis suggests that shadow play is a form befitting mythical tales, noting that “[s]hadows can evoke the ineffable: dreams, memories, horrors, ghosts, even abstract forms, more difficult to express in any other more concrete medium” (2012, 62). Further, Francis’s estimation that shadow puppetry is “especially suited to poetry and metaphor” (2012, 62) corroborates Zeilig’s (2015, 15) recognition that the inscrutable nature of dementia results in the fre­ quent use of metaphor to describe the condition. As such, the dramaturgy of It’s Dark Outside lends the performance a sense of fantasy. Projection and shadow work, therefore, effectively facilitate the antagonist’s characterisation as a (largely unseen) monster. It reflects the Western cultural rhetoric that describes dementia as “millennium demon” or “slow-moving tsunami.” The antagonist carries a wanted poster featuring the older man; he is “out to get” the older man. In It’s Dark Outside, memories are embodied onstage as small white clouds, another externalisation/visualisation of the condition. They rise up from behind the man and escape. Most times, the man physically interacts with the clouds.

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After each loss of a memory, the cowboy antagonist is then seen with an extra cloud lit up in his butterfly net. So, both memories and the entity acquiring the lost memories are analogised; the former as clouds and dementia as an antago­ nistic figure in pursuit. Personified in this way, dementia is embodied and imbued with intent. This positioning of dementia as antagonist typically renders the person with dementia as passive and disregards their status as subject. However, in It’s Dark Outside, the older man is positioned as an active protag­ onist, resisting the usual corollary of the antagonist analogy. Just as memories are embodied on the stages of Inside Out of Mind and Sundowner using layered theatre technologies, embodied memories feature in It’s Dark Outside. Sequences of light-heartedness present manifestations of happy memories. At one time, the soundscape changes and Peggy Lee’s I Love Being Here with You begins, first blurredly but soon becoming clear. The older man—as puppet—begins a simple tap dance and his cane is transformed from walking aid to theatrical prop. During this musical interlude, a puppeteer emerges from behind the tent and shows a cloud floating out of the man’s head and onto the ground. He steps onto the cloud and it takes him into the air as he continues to dance. A smaller cloud breaks off and tries to escape. For a while he is able to keep the small cloud close, dancing to hold it underfoot. When the cloud manages to escape further, he jumps to catch it, but the bigger cloud flies away, unanchored. He quickly takes off after the cloud offstage. When the man returns to the stage, he is in masked human form again, chasing the cloud. These transitions between masked actor and “created” actor facilitate the agility of the narrative within the show’s dramaturgical framing. The older man eventually catches up to his lost cloud, which is swiftly transformed into a dog made of cloud, that is, the puppeteers give life to the cloud and convincingly embody it as a dog. After a delighted greeting from the dog, the man produces a cloud ball and the two play out a game of fetch. In this sequence, the embodied memories—now more than nebulous cloud—are given greater meaning and their loss, greater significance. Not all memories embodied onstage are positive. Memories of war appear here and in Inside Out of Mind, reflecting the particular generation currently considered to be the most dementia-prone demographic.5 Still, the battle analogy is also a common expression of the caregiver experience, as well as dementia experiences in general. In contemporary performance about dementia, I would argue that either interpretation is significant to the narrativisation of the condi­ tion. The war theme in It’s Dark Outside manifests in one sequence: air-raid sirens are heard, and the projection develops into silhouettes of trenches and barbed wire. The projection takes on a green colour and soldiers appear in sil­ houette. On the stage, the man holds his cane as a rifle, another transformation of his walking aid to accompany a memory. The projected image zooms out to a wider view, and the cowboy is seen giant—now with more clouds in his net—and is scooping up soldiers. This scene shows the man’s dementia inter­ rupting a memory and literally deconstructing it from the inside.

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The most significant memory represented in the performance establishes a generational discourse, which later becomes the focal point of the larger story. During one scene, the older man—as live actor—sleeps in his tent. Illuminated Zs float up from his head as a music-box lullaby plays. The puppet rendering of the man appears and catches one of the Zs and it carries him up into the stars, flying. When he lands on a darkened platform, a new cloud drifts out; he seizes it and cradles it like a newborn, rocking and then holding it to his chest. Twice the cloud escapes his arms, and he snatches it back. The cloud almost pulls him over the edge of the platform. Then, he is flying with it through the skyscape again. He puts up a greater fight for this memory than he has for those prior, imbuing it with particular significance. He returns to his tent, holding the cloud. The cloud is once again taken from him, and he takes off into the night in pursuit. He catches the cloud and holds it close. He plays peekaboo with the cloud in his lap before they exit flying together. Like the dog cloud, this cloud as an embodied memory becomes a specific recollection of a child. If the child is assumed to be his, as opposed to a grandchild, then it is a distant memory. So, the erasure of this and the wartime memory demonstrates retrograde amnesia. This sequence is also significant for its use of the puppet form. The man’s floating up into the sky, carried by sleep, and flying through the night sky is an example of the rejection of verisimilitude in order to depict an alternate experience of reality. Here, his rendering as puppet does not dehumanise the man, but instead liberates him to beyond a naturalistic representation of the human subject, largely because his puppeteers are not themselves characters in the diegesis. D-Generation: Stories from dementia and co-presence D-Generation is set in a care facility, a setting that is both domestic in its function as a home, yet public in its housing of various residents and its openness to staff (Chapter 2). This site of intersection can facilitate themes of un/familiarity, privacy, care, and (less often) familial experiences of dementia. In D-Generation, family members are physically absent from the stage but projection and voiceover are used intermittently to voice their experiences. Relegating the familial ex­ perience to voiceover accentuates the relationship between the residents and the artists/TimeSlips™ facilitators. Both the stories collected using the TimeSlips™ method and the collection of the data itself (the group discussions that developed the stories), are staged through different forms of puppetry. The TimeSlips™ sessions are staged using live and “created” actors (Figure 5.1). The first story authored by the group is staged using two-dimensional rod puppetry in a window at the back of the stage (Figure 5.2) and the second story plays out in a projected animation. This first story is based on a picture of a man and woman in a cityscape. The second stimulus image is of a man and a ladder. In the animation, the man climbs up the ladder and into the clouds. Using different performance forms to stage the stories, compared to the interactions in the care facility, embraces their non-linear and non-naturalistic nature. Sandglass Theater is

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Figure 5.1 D-Generation: An Exaltation of Larks. The photo is taken from the side of the stage (stage right). The camera looks down a row of puppets (Henry, a puppet whose name is unknown, Mary, Elwood, and Florence); stood behind them are pup­ peteer/actors Kirk Murphy (only his hands are visible), Ines Zeller Bass, and Eric Bass). The live actors/puppeteers stand about a foot and a half taller than the seated puppets. The puppets sit in what appear to be custom-made wheelchairs that are narrow enough to seat the down-sized puppet, but tall enough for the puppeteers to interact with the puppets. The photo shows five puppets and three actors/puppeteers. The puppets each have greying hair, except Florence’s brown hair, and each is dressed in layers that suggest they feel the cold. Collectively, the costumes have pinks, reds, and orange tones in common. Photo credit: Joe Mazza.

focussed on joy in their endeavour, and yet the work remains conscious of the frustrations and misfortune of dementia. Co-presence, embodiment, agency The key comparison I draw between the two works is the co-presence in D-Generation and the mitigation of co-presence in It’s Dark Outside. These two performances both show that intentions to platform stories of people with dementia and deliver innovative storytelling do not necessarily result in unproblematic representations. Similarly to Gross and Blumenthal, Paul Piris (2014) considers puppets to be ontologically ambiguous; they appear to “share the same existence as subject with the puppeteer but nonetheless [remain objects]” (Piris 2014, 38). When a live actor interacts diegetically with the puppet subject, not just as a non-diegetic puppeteer, their “[c]opresence stresses this ontological ambiguity by confronting the puppet with a human protagonist” (Piris 2014, 30). That is, co-presence occurs when the

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Figure 5.2 D-Generation: An Exaltation of Larks. The photo features a puppet show that uses two-dimensional rod puppetry. The photo is a close-up of the window at the back of the stage. The window is framed either side with sheer white curtains. At the base of the window are grey bricks made from painted cardboard, and grey gargoyles of the same material sit either side, in front of the sheer curtains. The puppeteer Kirk Murphy is wearing a black beret. He holds a rods horizontally that forms a clothing rack. Miniature outfits on clothing hangers are pushed to one side of the rack. On the other side of the miniature stage, a rod puppet woman wears a white dress and red shows. Behind the woman and the puppeteer, a Parisian cityscape (featuring the Eiffel Tower) composed of greyscale cardboard creates a two-dimensional background to the scene. Photo credit: Joe Mazza.

human performers are not just puppeteers, but engaged in the diegesis as characters themselves. This dramaturgical relationship is remarkable “because it establishes a relation of self to Other between the two beings that are ontologically different: one is a subject (in other words, a being endowed with consciousness) and the other one an object (in other words, a thing)” (Piris 2014, 30). As an example, co-presence between puppets and live actors is pertinent to the Reckless Kettle6 works, Risking Happiness (2015) and State of Grace (2015). State of Grace is about dementia specifically and Risking Happiness is about caring for an aged parent more generally. Both are set in a domestic space and feature a father–daughter relationship demonstrating the experience—and frustration—of the adult–child care partner. In these works, the diegetic presence of both live and created actors represents a different kind of relationship than exists between two puppets or two actors, particularly in relation to a care dynamic. In both performances, the character with dementia is depicted as puppet and live actors play characters without dementia.

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The pair are further demarcated by the puppet’s voicelessness (for most of the performance). The live actors perform one-sided conversations. It is implied in these conversations that the person with dementia is speaking, yet the audience are witness to the puppet’s movement and behaviour only (its passive embodi­ ment). These works demonstrate the precariousness of using puppetry in works that stage dementia. A dramaturgy in which both puppets and live actors are present efficiently delineates those with dementia and those without. The man in State of Grace is bedridden, although, there is a movement sequence in which the puppeteers liberate him as he is elevated and swept through the air, exploiting the flexibility of the puppet form compared to a live actor. In D-Generation, the live actors play carers and facilitators of the TimeSlips™ method, while also manipulating and voicing the puppets who represent the residents of the long-term care facility. Accordingly, the puppeteers physically and verbally animate the puppet characters, whose object status is heightened in co-presence with their operator. Marketing material for the show states that “the play focusses on five inhabitants of a care-facility (the puppets) and their care­ givers (the puppeteers)” (Internationale Figurentheater Festival 2017). This description of the work illuminates a further distinction between the two groups: the carers essentially manoeuvre the residents who consequently have little agency. What these performances have in common is that the diegetic presence of both live and created actors represents a different kind of relationship than exists between two puppets or two actors, particularly in relation to a care dynamic. Compared to the Reckless Kettle pieces, the puppets in D-Generation do have voices, though they are disembodied, delivered by their puppeteers. In addition, they are more in line with Gross’s observation that puppets are often shrunken facsimiles of the human being. The puppet’s scale and lack of its own voice move the puppet further down the spectrum of “Other.” The reduced scale of the characters with dementia emphasises the demarcation, but also has the capacity to infantilise the characters with dementia. The infantilisation is heightened when the puppets are passed to audience members in the front row to view the puppet show of the first story. When the puppets are passed to audience members in the front row, the characters become spectators; for a time, they are no longer part of the action onstage, but continue to be a performative element of the work. A collectively devised story of the group is being staged for them. The moment when the puppeteers pass the puppets to the audience members is an instance of “breaking the fourth wall,” and the transition from “created actor” to spectator perhaps anthropomorphises the puppets. The action of handing over the puppets is carried out carefully, sharing with the audience the nurturing relationship between live and “created” actor, between facilitator and resident. Nonetheless, the act of handing a character to an audient also embodies in­ fantilisation. Because of the downscaled size of the puppets, they sit in the laps of the audience members and become more like children or dolls. As previously

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noted, the infantilisation of older people with dementia is a concern especially in institutionalised care (Marson and Powell 2014; Andrew 2006). In light of in­ fantilisation in residential care and the issues therein, the diminutive stature of the puppets and the way they are handled undermine the characters, despite the efforts by the creators towards giving people with dementia a voice. With this same action, the audience members also become complicit in the co-presence that stresses the puppet’s ontological ambiguity. They no longer merely see them as subjects within a closed diegesis, but actually come into contact with them as objects. As objects, though, the puppeteers in D-Generation do enable the puppets to perform in ways that live actors cannot. In one scene, a character’s recollection of dancing is embodied onstage as the puppeteers lift her to perform a dance through the air. As Blumenthal notes, “human actors remain inherently limited. They come in a paltry range of sizes and shapes” (1997, 16). In this way, “created actors” are less bound than live actors and have the capacity to transcend humanness. This—plus the way “puppetry enables discussion about […] neu­ roscience” and other diverse fields (Astles 2016, 54)—is likely the reason theatre markers employ puppetry to explore the unknowable nature of dementia. The issue of puppet–actor co-presence is not limited to performances about dementia. It caused outrage in 2019 among the autistic community in response to Southwark Playhouse’s All in a Row. The creators “cast” a puppet to play a nonverbal autistic child, inciting the creation of a (now unavailable) website dedi­ cated to collating blogs, reviews, and commentary of the performance’s ableism. In an article written by Bree Hadley, myself, and Michael Whelan, we remarked on the irony that the creators of the show claimed to be allies to autistic people, yet exploited their experiences to stage a play that was offensive and damaging to the autistic community (Hadley, Batch, and Whelan 2020). However, while All in a Row contained myriad representative issues, D-Generation is a much more nuanced case. The latter endeavours to give voice to people with dementia and embraces the non-linear and fragmented nature of the collected stories, especially as they are staged using two-dimensional puppetry and animation in an additional internal storyworld. By comparison, It’s Dark Outside uses a mix of puppetry, object theatre, and masked and unmasked actors, and, crucially, whenever the central character with dementia appears in puppet form, his surroundings are represented using object theatre and projection. No live actor is present to emphasise the ontological ambiguity of the created actor. His puppeteers are dressed in black and therefore their presence is not diegetically significant; they do not exist in the storyworld. He only appears alongside live actors when he, too, is played by a live actor in a mask. In D-Generation, co-presence demarcates the “live” characters without dementia from the puppet characters with dementia. Additionally, the centrality of spoken language that is typical of dramatic theatre may position characters with dementia as diminished, while the others around them continue to speak

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fluently. Omitting speech allows It’s Dark Outside to unfold unencumbered by spoken language that is characterised by decline. The character with dementia is liberated from their communicative difficulty and instead endowed with physicality to express themselves. It is puppetry, but with mostly mitigated de-humanisation. The power of the spoken word cannot be underestimated. The live per­ formers/puppeteers of D-Generation at times “break the fourth wall” to deliver a short monologue, directly addressing the audience. These speeches express the point of view of a carer or visitor to the home and report on the experience of collecting the stories. These instances of direct address are performed a few steps closer to the audience than the rest of the action in the work, enhancing the metatheatricality of the act. The perspectives presented in these addresses are significant and do shed light on experiences that have been taboo. Yet, these moments of direct address embody a layer of reality from which the residents appear to be excluded or incapable of joining. As Stanton B. Garner observes of the play, “the world of the dementia residents was often inaccessible” (2018, 59). This has resonance with Ewan Coleman’s experience of The Keys Are in the Margarine, in which care partners’ stories came through more strongly than the reflections of people with dementia, likely because it was a verbatim play driven by dialogue. The act of stepping forward, in front of the space in which their interactions with dementia have taken place, while still in character, physically exempts the human actors from this diegesis and gives them an additional power over the narrative. Their ability to assume the role of homodiegetic narrator, albeit briefly, affords them influence over the audience’s interpretation of the performance and their place in it. As Jordan recognises, “[l]anguage, particularly narrated language, is fundamentally linked to power, obedience, transgression, [… and] identity formation” (2010, 184). In this case, the ability for the char­ acters without dementia to speak in their own voices plus this narration of the situation provides them with an unmitigable power over the characters with dementia. The direct address enhances the demarcation between those with dementia and those without, which the use of puppetry has already established. It is worth noting that these metatheatrical reflections do express some of the humour and joy of the TimeSlips™ process. Sandglass Theater Company and Eric Bass at its helm are well-established and well-respected leaders of puppetry theatre whose artistry should be acknowl­ edged. Puppetry practitioners and scholars would agree that bad puppetry does exist, in which the objects are not transformed into living characters, and so skill is worth recognising here. Rachel Wenona Guy illustrates: Unfortunately the idea of puppetry is also frequently abused, as any object made to move, no matter how carelessly or without skill, can come to be classified as ‘a puppet’. […] It takes a rare artist to master puppetry – to elevate the craft beyond the visibility of struggle and artifice. If I am to analyse what

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makes a puppeteer successful I would say it is the ability to appear effortlessly in two places at once; within their own body and within that of the puppets. (2013, 39) Breath is central to Sandglass’s method (Periale 2002; Peck and Veteree 2005). In a workshop, Bass explains that puppetry is not simply “movement done to an object” (quoted in Periale 2002, 22). Puppeteers should “allow an object to fill or empty with breath. It’s not you the manipulator who’s performing—you are helping the object to perform” (Bass quoted in Periale 2002, 22). If an actor/ puppeteer is conscious of their breath, the object/puppet, too, breathes. Here, is both an acknowledgement that the puppet is an object that needs to be brought to life but also a technique that prioritises a lifeful (as opposed to lifeless) or active embodiment of the puppet. As a participant in a Sandglass puppet camp, Michael Veteree found that “Personally, I developed a better understanding of how my body moves and reacts instinctively with objects” (Peck and Veteree 2005, 5). This would suggest that the puppeteer’s own sense of embodiment is part of puppetry performance. Fellow participant and co-author, Sharon Peck, says “[o] ne of the tenets of the Sandglass method centered around response based actions, rather than preplanned scripting of puppet actions. […] the puppeteer does not move the puppet, rather the puppeteer supports the movement of the puppet” (Peck and Veteree 2005, 5). These impressions of Sandglass’s technique are more in line with tapping into the puppet’s “different kind of life” as opposed to its “lack of life.” The puppet may be an object, but to Sandglass—and likely other puppeteers—that merely ensures its originality and its capacity for metaphor, in that the puppet’s materials are more than aesthetic; they embody character. Materials and metaphor go hand in hand. After all, as Bass points out, ‘If a figure is an angel, there is a big difference if it is made of feathers or of stone.’ Students might begin by examining a piece of pre-Columbian art. They are asked to imagine it was just created, and that each crack in its surface, each chip or imperfection, was created intentionally by the artist. What statements does it make? The students work creating story out of image. They explore the puppet as a state of being. I ask if it makes a difference whether or not one is working with a figure that is representative, to which Bass replies that every figure or object has the potential to seem to experience the world, so every puppet or object is representative. (Periale 2002, 23) Despite my reading of D-Generation, many would argue that its use of pup­ petry is unproblematic (perhaps citing Sandglass’s artistry). This is important to note. Indeed, some audiences may accept a puppet as a kind of actor and may not perceive the co-presence to be dehumanising. It could be that the additional use of simple stick puppets (to stage the interior play) and an inanimate doll (that sits

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in a puppet’s lap) also serve to animate the puppets who portray people with dementia to a level where they more closely resemble the live actors than the other “performing objects” (Batch 2020). In It’s Dark Outside, the main puppet character is the quester. The arrangement of the narrative puts the older man’s experience of reality at the centre. Additionally, the puppet version of the man is actually used to enable the character to do things that would be impossible for a live actor, demonstrating Blumenthal’s (1997) observation of a human actor’s inherent limitation. This way, the journey of the older man can be animated beyond a human actor’s capability, privileging his experience of reality. In this work, the use of puppetry transcends humanness instead of acting as its antithesis. And D-Generation makes use of this aspect of puppetry as well. Perhaps to some performance makers, the puppet’s “belonging to a different kind of life” does not represent a lesser life or a state close to death, but instead signals the inscrutability of the experience of dementia. While the form is precarious, puppetry at least disrupts dramatic realism, which may be liberating for the subject with dementia, and potentially challenges the dominant and tragedised dementia narrative. Lastly, the work’s origination from the TimeSlips™ method (Basting 2001, 2003, 2006) seeks to lend creative agency to people with dementia, and its joyful tone helps to avoid the implication of a loss of self. Despite the potential for puppets to carry negative connotations of lifelessness, puppetry may be intended to merely signal the “Otherness“ of dementia or disability. Emma Fisher observes a “symbiotic relationship between puppetry and dis­ ability,” finding that “the puppet’s body is the perfect vessel to reclaim the voices of those that have been ‘othered’” (2020, 15). The puppet must be something ‘other’ than a simple representation of the standard human form, because otherwise it is rendered obsolete by actors. The need for puppets to be something other than the normal human makes them the perfect vessel to represent the disabled body. Like the disabled body, the puppet’s body has also been ‘othered’ and as such can be used as a tool to examine what it is to be ‘othered.’ (Fisher 2020, 17) Fisher’s observations do align well with the other literature on the puppet’s capacity to do more than a live actor. “Rather than seeking to mimic our bodies, puppets embody how we feel about them” (Fisher 2020, 20). The work at the centre of Fisher’s practice-led PhD, Pupa (2017), was informed by stories from people who identify as disabled. Her description of the performance and how it represented her own story and disability makes a convincing case for this puppet–disability symbiosis. Her account illustrates how playing around with the construction of the puppet can counter “internalized normalism” (Fisher 2020, 20). In the performances discussed in her article, “two different others are put in dialogue with each other, the disabled puppeteer and the puppet, creating a symbiotic relationship, one telling the other’s story” (Fisher 2020, 26). Taking

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Fisher’s points into account, I would emphasise that the creator behind the work and indeed the actor in co-presence with the puppet are pertinent. In Pupa, an audience sees a disabled performer invoke a puppet to perform their own lived experience of disability. Here the puppet is a tool for the live performer to present their lived experience, as a secondary or surrogate performer onstage. The disabled character/performer has dramaturgical power over the puppet, as opposed to a non-disabled performer manipulating the disabled character as object. (See also Purcell-Gates and Fisher (2017); Kuppers (2020)). It’s Dark Outside ending: The “right kind” of dementia story re-emerges It’s Dark Outside is also more complex than its mitigation of co-presence. I move away from puppetry now to discuss its ending where the central character with dementia is disassembled (via the undressing motif discussed in Chapter 4) and the focus is shifted to the experience of the man’s son, displacing the man with dementia as the central protagonist. First, both the older man and the “antagonist” appear in silhouette. The latter holds up the wanted poster with the older man’s face, and the two circle one another in line with the old western theme. The cowboy gestures for the older man to approach but the latter shakes his head. The older man then raises his cane and the cowboy holds up an arm in defence. The music changes to mark a change in their relation to one another. The projected image zooms in to inside the older man’s head, where there is one big cloud. The cloud reveals a family home from the outside. Within this scene, clouds float to the ground and become the older man and his son. The son runs around with a butterfly net. Then, everything in the projected scene is erased bar the boy with his net. The projection zooms out and then focus is shifted to the stage where the two now stand in person; it is first time the younger man is seen embodied onstage. They recreate the poses from the last sequence: the older man with a raised cane and the cowboy’s cowering. Still cowering, the cowboy takes off his hat to reveal his face. A moment of mutual recognition takes place, but it appears that the older man does not quite understand their relationship. It is made clear in their physical interaction that they are the father and son from the projected memory. So, the antagonist of dementia is revealed to actually be the man’s son who has been trying to find him in the night, not stealing but collecting his lost memories. This subversion of the narrativisation of dementia as a looming monster is sig­ nificant; the performance is able to subvert that concept, though it is replaced by a more common familial tragedy plot. The revelation quells the positioning of dementia as active aggressor and the person with dementia as passive victim. Where the younger man had previously been shown only as a larger-than-life figure in silhouette, when his true relationship to the older man is revealed, he is a live actor, portrayed as ontologically equal to his father.

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They make to leave together, but the man with dementia stops as a cloud emerges from his head and he drops his cane to the floor. The son chases the drifting cloud and attempts to return it to the man, but the latter drops it on the ground. The son bends to pick it up and puts it beneath the older man’s hat. He takes more clouds from his net and tries to get his father to hold them, but the older man has gone limp and they all fall to the floor. This is the beginning of the older man’s erasure. The son stops and then removes his father’s hat and places it on the stage. He repeats this with his glasses and shoes. He takes his father’s jacket and takes more time with this item, hugging it to himself. He removes the mask from the performer who—now in all black—exits in the dark. The undressing of the older man is an embodiment of un-becoming. It is another variation on the undressing motif seen in Sundowner and 1 Beach Road. In this way, the ending undoes some of the attention it has paid to centralising the character with dementia. Despite the liberation of the man with dementia in his puppet form and the lack of co-presence, as well as the subversion of the dementia-as-antagonist narrative at the end of the work, the unravelling of a now passive protagonist reinforces a premise of a loss of self. Finally, the focus of the performance shifts to the son and away from the character with dementia. Following this undressing/un-becoming, a generational discourse—which had been disguised for most of the performance—becomes central. The son carries the items and some clouds offstage. Meanwhile, the smaller puppet ver­ sion of the man with dementia enters with his cane and pokes at some of the clouds on the stage floor. He then ascends through the space, as if using invisible stairs. It is unclear whether this is representative of death or merely a tipping point into a more advanced stage of dementia, though the former would seem more likely considering his ascension. After the older man exits, the experience of the son becomes the focus of the work: the projection shows the cowboy’s return home, carrying his father’s items and the net, which contains some remaining clouds. His own son runs out to greet him; after an embrace, the young boy runs back inside. The cowboy stands and the clouds drift up and out of the net as he watches them ascend. This third act of undoing for the subject with dementia (after the undressing and the ascension) erases the last trace of the man with dementia. It can be assumed that the son retains the memory of his father, and even passes on those memories onto his own son. Yet, the symbolic letting go of the older man’s cloud memories to float up and out of view indicates a complete erosion of the man who had been the central character of the per­ formance. The ending also shifts the setting of the work from the adventurous outside to a domestic place, albeit only the exterior. The absence of an onstage familial relationship for most of It’s Dark Outside aligns with its outdoor en­ vironment (that is, not either type of residential setting seen in other perform­ ances). Only when the central father–son relationship is revealed towards the end does the performance return to a domestic setting, reiterating the family home as a site for familial stories about dementia.

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This ending demonstrates the pull of the family tragedy as a dementia plot. It also gestures towards the impulse to provide catharsis and the incompatibility of this convention with dementia narratives. Steven Zarit and Joseph Gaugler describe the sense of relief that can be associated with the death of a person with dementia: “The death of the patient is the end of a long journey for the family. When death occurs in the late stages of dementia, families are often prepared and view it as an end to the patient’s suffering” (2006, 191). We see this sense of relief reflected in these works that attempt a kind of gentle fading away of a character with dementia. It provides the “relief” to an audience seeking a neatly tied up ending to a performance. Puppetry is highly versatile form that requires a great deal of artistry to pro­ duce a character that is more actively than passively embodied. The works dis­ cussed deploy puppetry and object theatre for their capacity to evoke fantasy and stage embodied memories. Yet, as I have discussed, puppetry carries with it many complicating factors that may problematise dementia representation. Ultimately, its use speaks to a desire to explore dementia’s “Otherness.” Notes 1 For an exploration of the uncanny nature of ageing in narrative, see Amelia DeFalco, who identifies that “Discussions of aging are always obliquely discussions of mortality. The same might be said of the uncanny. […] The mortal condition is unavoidably uncanny: though death is our guaranteed conclusion, it remains unknown and incomprehensible” ( 2010, 139). 2 My analysis of D-Generation is based on a one-time, live viewing of the work. Later I also referred to photos to aid in my analysis. To gain a sense of the dramaturgy, find video excerpts at https://www.youtube.com/watch?v=xPh2rjhaIkE. 3 Basting had previously developed stories collected using the method into the epon­ ymous Time Slips, first staged in 2000 ( Chapter 2). 4 For the analysis of It’s Dark Outside, I had access to a video recording of the work. For a sense of the work’s use of theatre technologies, see the trailer at https://www.youtube. com/watch?v=hRuuV2mA9Ro. 5 See Capstick and Clegg (2013) for their research on several British men whose dementia has meant that, after years of remaining silent on their experiences of war, they now share details of this time in their lives, where previously their “stiff upper lip” has held them back. 6 Reckless Kettle is a puppetry theatre company based in the UK, and the creators of State of Grace (see http://www.recklesskettle.org/shows.html for information and rehearsal footage) and Risking Happiness (see https://www.youtube.com/watch?v= QvwwEPDA7Yg for a video).

References Andrew, Alexa. 2006. “The ethics of using dolls and soft toys in dementia care.” Nursing and Residential Care 8 (9): 419–421. doi: 10.12968/nrec.2006.8.9.21731 Astles, Cariad. 2016. “Between worlds.” Moin-Moin: Revista de Estudos Sobre Teatro de Formas Animadas, 16 (12): 54–77.

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Basting, Anne Davis. 2001. “‘God is a talking horse’: Dementia and the performance of self.” The Drama Review 45 (3): 78–94. http://www.jstor.org/stable/1146913 Basting, Anne Davis. 2003. “Reading the story being the story: Context and content in stories by people with dementia.” Generations 27 (3): 25–29. Basting, Anne Davis. 2006. “Arts in dementia care: ‘This is not the end … it’s the end of this chapter.’” Generations 30 (1): 16–20. Batch, Morgan. 2020. “Dementia in dramaturgically hybrid performance and the per­ formance of objects.” Performance Research 25 (4): 65–73. doi: 10.1080/13528165.2020.1 842033 Bay-Cheng, Sarah. 2015. “Virtual realisms: Dramatic forays into the future.” Theatre Journal 67 (4): 687–698. https://muse.jhu.edu/ Blumenthal, Eileen. 1997. “The life and death of puppets.” American Theatre 14 (1): 16–19. Brittain, Katherine, Cathrine Degnen, Grant Gibson, Claire Dickinson, and Louise Robinson. 2017. “When walking becomes wandering: Representing the fear of the fourth age.” Sociology of Health & Illness 39 (2): 270–284. doi: 10.1111/1467-9566.12505 Capstick, Andrea and David Clegg. 2013. “Behind the stiff upper lip: War narratives of older men with dementia.” Journal of War & Culture Studies 6 (3): 239–254. doi: 10.11 79/1752627213Z.00000000021 Coleman, Ewan. 2015. “Theatre review: The Keys are in the Margarine.” The Dominion Post, 12 November. http://www.stuff.co.nz/dominion-post/culture/73987978/theatrereview-the-keys-are-in-the-margarine DeFalco, Amelia. 2010. Uncanny subjects: Aging in contemporary narrative. Ohio State University Press. de Rover, Mischa, Sharon Morein-Zamir, Andrew D. Blackwell, and Barbara J. Sahakian. 2008. “Cognition and ageing: Dementia.” In Handbook of developmental cognitive neuro­ science, 2nd ed., edited by Charles A. Nelson and Monica Luciana, 607–619. MIT Press. Fisher, Emma. 2020. “The symbiotic relationship between puppetry and disability: The emergence of a strong contemporary visual language.” Journal of Applied Arts & Health 11(1 & 2): 15–28. doi: 10.1386/jaah_00015_1 Francis, Penny. 2012. Puppetry: A reader in theatre practice. Palgrave Macmillan. Fuller, David. 2011. “Dementia at the opera: The Lion’s Face.” Opera Q 27 (4): 509–521. doi: 10.1093/oq/kbs032 Garner, Stanton B. 2018. Kinesthetic spectatorship in the theatre: Phenomenology, cognition, movement. Palgrave Macmillan. Gross, Kenneth. 2011. Puppet: An essay on uncanny life. University of Chicago Press. Guy, Rachel Wenona. 2013. “Enlivening the uncanny: On existential mirrors and the anthropomorphic impulse in adult puppet theatre.” Masters dissertation. Monash University. doi: 10.4225/03/58b4c05bbef23 Healey, Emma. 2014. Elizabeth is missing. Harper. Hadley, Bree, Morgan Batch and Michael Whelan. 2020. “The Entitled Ally: Authorship, Consultation, and the ‘Right’ to Stage Autistic People’s Stories.” Disability & Society 36 (9): 1489–1509. doi: 10.1080/09687599.2020.1794796 Internationale Figurentheater Festival. 2017. “Sandglass Theater USA: D-Generation: An Exaltation of Larks.” Accessed September 17, 2018. https://www.figurentheaterfestival. de/veranstaltung/d-generation-an-exaltation-of-larks/?lang=en

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Kontos, Pia C. 2004. “Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease.” Ageing & Society 24 (6): 829–849. doi: 10.1017/S0144686X04002375. Kontos, Pia C. 2005. “Embodied selfhood in Alzheimer’s disease: Rethinking personcentred care.” Dementia 4 (4): 553–570. Kuppers, Petra. 2020. “Towards disabled futures: Non-realist embodiment in puppetry.” Journal Of Applied Arts & Health 11 (1 & 2): 59–72. doi: 10.1386/jaah_00018_1 Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge. Lloyd, Jane. 2019. “Wandering in care homes: The role of artists in reimagining walking performed by people living with dementia.” Research in Drama Education: The Journal of Applied Theatre and Performance 24 (1): 23–37. doi: 10.1080/13569783.2018.1544489 Marshall, Karrie. 2013. Puppetry in dementia care: Connecting through creativity and joy. Jessica Kingsley Publishers. Marson, Stephen M. and Rasby M. Powell. 2014. “Goffman and the infantilization of elderly persons: A theory in development.” Journal of Sociology & Social Welfare 41 (4): 143–158. Odzakovic, Elzana, Ingrid Hellström, Richard Ward, and Agneta Kullberg. 2020. “‘Overjoyed that I can go outside’: Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living With dementia.” Dementia 19 (7): 2199–2219. doi: 10.1177/1471301218817453 Peck, Sharon and Michael Veteree. 2005. “Recognizing the artistry of the bass method of puppetry: Voices from Sandglass Theater’s puppet camp.” The Puppetry Journal 56 (3): 4–6. Periale, Andrew. 2002. “Sandglass Institute: They call it puppet boot camp.” The Puppetry Journal 54 (1): 22–23. Phinney, Alison and Catherine A. Chesla. 2003. “The lived body in dementia.” Journal of Aging Studies 17 (3): 283–299. doi: 10.1016S0890-4065(03)00029-X Piris, Paul. 2014. “The co-presence and ontological ambiguity of the puppet.” In The Routledge companion to puppetry and material performance, edited by Dassia N. Posner, Claudia Orenstein and John Bell, 30–42. Taylor and Francis. Purcell-Gates, Laura and Emma Fisher. 2017. “Puppetry as reinforcement or rupture of cultural perceptions of the disabled body.” Research in Drama Education: The Journal of Applied Theatre and Performance 22 (3): 363–372. doi: 10.1080/13569783.2017.1329652 Read, Alan. 2013. Theatre in the expanded field: Seven approaches to performance. Bloomsbury Methuen Drama. Sweeting, Helen and Mary Gilhooly. 1997. “Dementia and the phenomenon of social death.” Sociology of Health & Illness 19 (1): 93–117. doi: 10.1111/1467-9566.ep1 0934317 Venkatesan, Sathyaraj and Raghavi Ravi Kasthuri. 2018. “‘Magic and laughter’: Graphic medicine, recasting Alzheimer narratives and Dana Walrath’s Aliceheimer’s: Alzheimer’s through the looking glass.” Concentric: Literary and Cultural Studies 44 (1): 61–84. doi: 10.6240/concentric.lit.201803.44(1).0004 Walrath, Dana. 2013. Aliceheimer’s: Alzheimer’s through the looking glass. Penn State University Press. Zarit, Steven H. and Joseph E. Gaugler. 2006. “Care by families for late stage dementia.” In Severe dementia, edited by Alistair Burns and Bengt Winblad, 185–192. John Wiley & Sons.

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Zeilig, Hannah. 2015. “What do we mean when we talk about dementia? Exploring cultural representations of ‘dementia’.” Working with Older People 19(1): 12–20. doi: 10.1108/WWOP-10-2014-0032

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) All in a Row (2019) by Alex Oates (Southwark Playhouse) (England) André y Dorine (2010) by Kulunka Teatro (Spain) Angeleta & Etelvina (2014) by Around the Glove (England) Coop (2008) by Black Hole Theatre (Australia) Dark Matter (2017) by Vertebra Theatre (England) D-Generation: An Exaltation of Larks (2013) by Sandglass Theater (US) Dottie (2005) by Robin Marcotte (US) End Games (2015) by Movingstage Marionette Company (England) Finding Joy (2014) by Vamos Theatre Company (England) Grandma Remember Me? (2012) by Belinda Lazenby (England) Ingatan (2017) by Fasyali Fadzly (Malaysia) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia) Jack and Jill & The Red Postbox (2013) by Claire Webster Saaremets (Skimstone Arts) (England) Perish the Thought (2012) by Susan Harris (Australia) Pupa (2017) by Emma Fisher (Rep. of Ireland) Risking Happiness (2015) by Reckless Kettle (England) State of Grace (2015) by Reckless Kettle (England) Sundowner (2011) by KAGE (Australia) The Keys are in the Margarine (2014) by Cindy Diver, Susie Lawless, and Stuart Young (New Zealand) The Lion’s Face (2010) by Mahogany Opera Group (England) This is Us (2018) by Leeds Playhouse (formerly West Yorkshire Playhouse) (England) Tomorrow (2014) by Vanishing Point (Scotland)

Part 2 Summary

Social research of dementia has shown embodiment to be a key aspect of selfhood, demonstrating that cognitive (and linguistic) decline does not take away from embodied experiences of one’s environment (whether their own home, a nursing home, or outside) and relationships. It is, therefore, crucial to examine, one, how this element of selfhood may be broached in theatre but also, two, the different ways that theatre technologies can evoke active and passive embodiment. In Chapters 4 and 5, I have considered performance mediums, place, object relationality, embodied memories, embodied metaphors, and embodied meanings in endings. Theatre distinguishes itself from other art forms by its liveness, the physical presence of bodies onstage, and its audience. Oddly, puppetry—the use of created actors—subverts this somewhat; the live spectacle is the bringing to life of something that is inorganic, not the inherent liveness of the performing object. The embodiment of the puppet in It’s Dark Outside compared with D-Generation, in which it is made passive by co-presence with live actors, is demonstrative of the precariousness of the “created” actor. In It’s Dark Outside, before the shadowy figure is revealed to be the protagonist’s son, he is presented as a larger-than-life adversary on the hunt for the man and his memories. (As another embodied metaphor, the set and props in 1 Beach Road embody an allegory of dementia as a crumbling, eroding coast, echoing popular rhetoric of the rise of dementia as an inevitable catastrophe, not unlike a natural disaster.) Yet, in It’s Dark Outside, as a foil to the shadowy figure, the man is an adventurer on the run, fighting to retain his memories. Typically, people with dementia are portrayed as passive victims to the disease. Despite the man’s being a puppet, the frailty that he would embody as a live actor in a traditional dramatic performance is swapped for an adaptable and enduring puppet body. Here, a passively embodied medium is deployed for to represent an actively embodied experience of dementia. Many stories in various forms (films, novels, etc.) represent memories through flashbacks and non-linear storytelling. In Sundowner and It’s Dark Outside, recollections are instead embodied in the present, existing concurrently with the DOI: 10.4324/9781003282037-10

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consensus of reality, which is facilitated by the hypermediality of live theatre. Memories staged tangibly—that is, using actors or effects, as opposed to alluding to a memory being experienced by a character—are made part of the diegesis and, therefore, affirm the experience of the person with dementia. In D-Generation, stories instead of memories are staged. Very much in keeping with the intentions of TimeSlips™, the show focuses on original storytelling in lieu of memories shared by people with dementia in care. The settings of dementia narratives dictate, to some extent, the kind of stories told there. In Sundowner, Peggy appears to be isolated from the outside, public world. Dementia and her embodied memories transform the domestic space and her embodied relationship to it. In 1 Beach Road, despite the broader setting of the erosion analogy (the coastline), Jane and Victoria are similarly insulated—and supporting characters are disembodied. By contrast, the care facility setting in DGeneration leans away from the insulation of the family home (and shifts focus from family care partners) and instead generates a small community of residents. It’s Dark Outside at first appears to represent an anomaly in staging its story outside, that is, before returning to a domestic space and a family plot. When the older man in It’s Dark Outside is unravelled and can physically no longer hold his cloud memories, his son takes them in his arms. Then the significance of the butterfly net becomes about collecting the escaping memories. Yet, in the end, the younger man lets the clouds float away. Even if not in actuality, symbolically, he relinquishes his father’s memories. In juxtaposition, in Peggy’s letter to her children, she asks: “When it comes to pass, that I can no longer hold the memory of who I used to use, will you hold it for me?” Notwithstanding this slight difference, both do exhibit some markers of a tragic plot in their respective endings. In this way, the endings of dementia narratives are important to examine. If a conventional resolution that induces catharsis is the goal, then dementia experiences are not conducive to this kind of storytelling. The discord between the theatrical convention and the narratives staged in the performances is evident in several works in this study. The removal of clothing marks Jane’s exit before she is seen swimming down into the sea. This descent is in contrast to the older man’s ascent in It’s Dark Outside, and yet the two both use an undressing motif and end by shifting focus to the character without dementia. While the performances in Part 2 gesture towards the postdramatic palette, in that they use various theatre technologies to disrupt mimetic representation, their adherence to traditional dramatic story structures can lean towards a tragic framing of dementia.

Part 3

Postdramatic Theatre Radical Alternatives for Staging Dementia

6

Experiential Performance Memory Point(s)

Postdramatic performance and dementia In a review of The Lion’s Face, noting the fragmentation of the opera’s nar­ rative, Bella Todd (2010) wonders “whether dementia is not so much a theatre taboo as innately anti-theatrical.”1 Her observation relates primarily to the discomfort some audients expressed in a post-show discussion. They found that, first, it was unnerving to witness someone struggle to communicate coherently and, secondly, that the tragedy of dementia was difficult to stomach. I find Todd’s use of “anti-theatrical” specifically interesting. To me, it reso­ nates with the idea that the core elements of drama—linearity, coherence, catharsis—are sometimes disrupted by dementia-centric narratives. Basting similarly recognises that the normative structure of storytelling is not neces­ sarily conducive to dementia narratives. In an article about TimeSlips™, she opens by acknowledging: When as children we first learn stories, they begin with “Once upon a time,” proceed through several threatening but ultimately surmountable obstacles, and end with a “happily ever after.” As we age, we learn to see that pattern as an ideal rather than a mirror to our everyday life. We use this ideal to lift our spirits, help us carry on through difficult times. But this ideal can also seduce us away from recognizing the value of other kinds of stories that do not conform to this pattern. (Basting 2003, 25) Here, Basting acknowledges that not all stories are linear like fairytales or “well-made” plays2 and implies that this expectation disqualifies people with dementia as storytellers. Her comments also raise questions about the expectation for catharsis and a “happily ever after” in stories about dementia. If the condition is a threatening obstacle, then it does not fit the ideal of an ultimately sur­ mountable one (read: curable/reversible). I have considered in the preceding chapters the use of song, dance, physical theatre, object theatre, and projection in dementia narratives onstage deployed to

DOI: 10.4324/9781003282037-12

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evoke various aspects of dementia experiences. This book follows a general progression from relatively traditional dramas where the action is driven by the spoken word (namely, The Father and Really Old, Like Forty Five) to the per­ formances discussed here in Part 3, which demonstrate a radical departure from stories driven by dialogue, linear plot, and traditional character arcs. As its title suggests, this final part of the book is distinguished from the previous two by the fact that the performances analysed are closer to the postdramatic end of an imagined theatrical spectrum. Postdramatic theatre is characterised by a desta­ bilisation of traditionally dramatic conventions, which can include non-mimetic presentation, the demotion of language or promotion of other “texts” or codes in the performance, fragmentation, and “the demand for an open and fragmenting perception in place of a unifying and closed perception” (Lehmann 2006, 82). Memory Point(s) and RUFF are especially apt for this final part of the book for the progress and innovative styles of storytelling they each represent. In contrast, Sul Concetto di Volto nel Figlio di Dio earns its own chapter partly because it delib­ erately problematises the subject matter. Together, the three show some of the breadth of possibility for presenting dementia narratives/experiences in live performance. In Sabat’s writing about dementia and selfhood, he stresses that “standard neuropsychological measures of language function do not give us a complete picture of what [people with dementia] think or can think and feel” (2001, 89). For this reason, the postdramatic destabilisation of spoken language as primary signifier introduces new possibilities for story-telling/-sharing. The postdra­ matic label arose from a need to theorise new forms of performance that could no longer be described by existing theory. While Joseph Danan calls the postdramatic a phenomenon and aligns it with “a radical transformation of the theatre” (2014, 3), Lehmann identifies his theory as a “palette of stylistic traits” (2006, 86). The prefix “post” refers to a theatre that “operate[s] beyond drama,” not in denial of it (Lehmann 2006, 27). Lehmann explains that “[p] ostdramatic theatre thus includes the presence or resumption or continued working of older aesthetics” (2006, 27). Puppetry, shadow theatre, and dance are examples of these ancient forms of performance. Their inclusion in per­ formances of dementia helps to disrupt the Western dramatic tradition of mimesis. More recent (digital) technologies, such as sound recordings and effects and projection technologies, have also influenced contemporary theatre production. Sarah Bay-Cheng (2015) recognises this role of advancing tech­ nology, noting that practitioners are experimenting with technological ele­ ments to create their work. Alan Read observes a “paradigm shift from a textual culture to a mediatised image and sound culture” (2013, 55). That is not to say that works that represent the move away from logocentric drama (and the inherent power dynamic produced by language) are immune from reproducing stereotypical images of dementia onstage.

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Applied performance projects To contextualise the present discussion and the analysis at the centre of this chapter, it is necessary to return to discussions of applied theatre (see a sum­ mary of the TimeSlips™ program in Chapter 2). Spare Tyre’s The Garden (England) is an interactive, multisensory storytelling program for people with dementia, especially those in nursing homes, though it has also toured to theatre and community venues. The Garden is an evolution of “Once Upon a Time,” a project which took participants on a journey and exploited liveness to engage with taste, touch, and smell. As part of this evolution, The Garden was made non-verbal to “remove[s] language as a barrier for people living with a dementia” (Prashar in Created Out of Mind 2018). Spare Tyre’s work on the whole explores “different ways of communicating that are inclusive and uncensored” (Created Out of Mind 2018). Three performers bring the show to intimate audiences of ten or fifteen people with dementia and their carers. [Line break.] A small audience, seated within the performance area, are given items from the natural world, and encouraged to smell, taste, dig, dance and dress for the weather! Projection is used on huge and tiny scales, bringing busy animal lives into the space. Live and recorded music plays throughout; the performance is almost non-verbal. (Disability Arts Online 2017) Artistic director of Spare Tyre, Arti Prashar, also notes that when the project toured in 2017, it was autumn, “as the nights draw in and the weather cools. Many of our audience don’t spend much time outside. It’s almost certainly a few years since they threw a snowball! The Garden brings the outside in” (Prashar in Disability Arts Online 2017). Additionally, Spare Tyre offers training in non-verbal communication for professional carers. See Spare Tyre (2013, 2017a, 2017b, 2017c) for more information about the company and its work. A program like Nicky Taylor’s Our Time at the Leeds Playhouse is also about encouraging creativity in people with dementia, and about making them feel welcome at the theatre. Our Time uses tactile interaction as its stimulus. The two-hour sessions, with groups of around ten people, used props and costumes as a stimulus for creating poetry, story, music and movement and encouraged people to respond in a way that meant something to them as individuals. Working together with sensitive, inquisitive artists and enabling support workers, we discovered effective approaches included using the senses, voice, gesture and humour to connect people, to help them feel safe, valued and able to respond, confident that opinions and imagination carried no rights and wrongs. (Taylor 2019, 91)

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Taylor also cites seeing “people reconnect with their bodies” (2019, 91) indicating an embodied experience. The idea that creativity may be embodied, not purely cognitive, aligns with Sabat’s (2001) writing about embodiment and Kontos’s (2005) more contemporary writing about embodied selfhood. The Our Time workshops were always followed by an informal catch-up with tea and biscuits—arguably an embodied socialisation. It is important to note, though, that even social groups such as this have an inherent biomedical dimension because their membership is based on a diagnosis. Yet, Taylor highlights the rarity of opportunities for people with dementia to socialise not only without fear of faux pas, but with other people with dementia. The benefit of sensory engagement for people with dementia is supported by researchers like Tolson et al. (2015), who write about including sensory activities in day care for people with dementia. Ageing and creativity—especially the wellbeing benefits of the arts—is now recognised at a national level in some countries including the UK (Gordon-Nesbitt 2019). Creative activity can help maintain or nurture one’s sense of identity (Stenhouse et al. 2013). This idea is supported by projects and research identified in Chapter 2 that apply drama and storytelling in workshops with people with dementia. Janet Gibson advocates that more diverse storytelling modes (for example, multimedia and digital tools that do not rely on spoken language) should be considered to “more fully account for the aptitudes and creativities of old people with dementia” (Gibson 2020, 81). In a project like Stenhouse et al.’s (2013), the digital stories produced by the participants—all seven of whom had early-stage dementia—were then collated into a learning package for nurse education. In this way, the outcomes (and beneficiaries) of this research are twofold: both self-affirming (for participants) and educative (for care workers). Furthermore, “connecting the participants with a wider audience [ … , h]aving their stories attended to within the context of these relationships may lead to affirmation of self and a sense of community” (Stenhouse et al. 2013, 140). Memory Point(s)’s, too, shows a similar double benefit, in that it connected participant stories/memories with an audience. The applied theatre projects Forgotten Futures (2017 ongoing, Hope Graduate Theatre Company) and Never Ending Story (2016 ongoing, RMD Memory Matters Creative Arts Company) did not culminate in a live per­ formance per se, as Memory Point(s) did, but nonetheless speak to possibilities of “Imaginary Theatre” over “Reminiscence Theatre” for people with dementia (Malone and Miles 2019). Never Ending Story is an intergenerational project that brings together school children and adults with dementia, and the 2019 installation for Forgotten Futures at the Tate Liverpool was “designed to be intergenerational in approach” (Tate 2018). In their encounter with the instal­ lation, “[t]he public will interact with film, images, storytelling performance and discussions, all of which are informed by insights offered from people living with dementia in nursing homes” (Tate 2018). The project itself and certainly this installation were intended to platform otherwise unheard perspectives, and both

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Forgotten Futures and Never Ending Story were multisensory in their engage­ ment. Niamh Malone and Donna Miles suggest that when “Applied Theatre practitioners embrace the unpredictable energy of narrative gaps, they open up spaces into which imagination may move, to complete, or indeed create, stories” (2019, 64). In this way, remembering is treated “as a creative act” (Malone and Miles 2019, 64). While Memory Point(s) shows ties to Reminiscence Theatre, its composition is far more concerned with imagination and play, not to mention the audience’s embodied encounters with those memories. Memory Point(s) Platform 4’s Memory Point(s)3 is distinct among the catalogue of performances in this study for its immersive, experiential, promenade composition. Promenade theatre refers to works—often staged throughout a building and its grounds—through which the audience walks, experiencing different scenes along the way. There are often opportunities to stand or sit and watch; some­ times the audience may interact with members of the ensemble, or some parts of a promenade work may not involve performers. Promenade theatre is inherently immersive: the audient is within the work instead of merely sitting outside of it, watching. There is no “fourth wall” to break. By experiential work, I refer to performance that engages with different senses, encouraging its audiences to not only look and listen but to touch, perhaps to open doors, to peer into a small space/installation, perhaps to eat and drink, to get dressed up, perhaps to write something down for a future audient to experience. Memory Point(s) invites its audience to do all these things. The ability to connect with this work sensorily without relying on listening and understanding dialogue alleviates some cognitive strain and allows for a greater diversity of interpretations. Memory Point(s) abandons linearity and chronology, offers alternatives to the common relationships staged in dementia narratives, and substitutes emblematic clinical markers for abstract symbols of remembering and forgetting within a broader metaphor for the mind. Designed to be performed in and around a theatre venue, the piece was staged in five different locations (including Poole, Winchester, Eastleigh, and London) from 2012 to 2015. With each iteration, the path was altered to suit the site. Each time, audience numbers were kept to small groups of about five people. Collected memories embodied in “pockets of installation” (Church 2017) punctuate the tour. The installations take form as arrangements of framed photos, projected short film, and miniature memory dioramas. Audiences are invited to witness these archived stories of others and to interact with the fellow audients in their small, intimate groups. The dramaturgy of Memory Point(s) can be characterised by Lehmann’s explanation of postdra­ matic performance as “more presence than representation, more shared than communicated experience, more process than product, more manifestation than signification, [and] more energetic impulse than information” (2006, 85).

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Memory Point(s) is considered important to this research for its immersive and promenade dramaturgy. Moreover, with a layered, largely tangible amalgamation of multimedia details, its representation of dementia is not prescriptive. Church (2017) states that she “wanted to get away from the idea of plot and narrative and actors.” Reviewer Lyn Gardner (2013) corroborates this, saying that the work offers “fragments and snatches, rather than a tidy narrative.” As such, chronology and linearity are made redundant and catharsis is not an aspiration for the ending of the performance. Actually, Memory Point(s) is intentionally episodic, fractured, and open to interpretation (Church 2017). Reviews of the work describe the experience as “sometimes full of clarity, sometimes fuzzy” (Gardner 2013) and “disorientating” (Lewis 2013). To contrast this disorientation, the tactile and intimate interaction with memories of real people and families who have ex­ perienced dementia anchor the work. However, these interactions are often fleeting, comprising a framed photograph, an item of clothing, or a snapshot of a family holiday encapsulated in a microinstallation. The pockets of installation—while making tangible the intangible (memories)—resonate with the ephemerality of memory. Development: Memory Point(s): The Beauty of Remembering Platform 4 documents the years of development in the program-cum-photo journal, Memory Point(s): The Beauty of Remembering. They write about how the project began out of workshops “that would lead up to a very special event” (Platform 4 2013, 10). They always intended to stage something, but wanted to “tak[e] the pressure off us and them about ‘outcomes’” (Platform 4 2013, 12). Ultimately, the performance makers purposed the work for intimacy and en­ gagement. Platform 4’s Artistic Director Catherine Church notes her inspiration for beginning work on the project: Initially it was just literally a feeling that as an artist I wanted to work with older people for a project. I’d never done that before […]. I’ve never done a project where older people were in the picture. (Church 2017) Church connected with the Southampton and Eastleigh’s Connections Club and a Singing for the Brain group (under the Alzheimer’s Society) (Hatton 2021). The groups provide both a social setting and a support group for people with dementia and their care partners. There is, therefore, an emphasis on real people and their stories. Memory Point(s) is the culmination of stories collected from, and ideas workshopped with, the people in the groups, though is not limited to their experiences with dementia. In its focus on the lives and memories of people with dementia, as opposed to the experiences of dementia exclusively, Memory Point(s) differs from many research-based performances that tend to be primarily con­ cerned with the experiences of dementia. It was decided that the work should be

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about celebrating the lives of the participants and the performance would be “generally a positive experience,” that it would have “a melancholy but not a depression element to it” (Church 2017). “We needed to see our group as people not sufferers or carers” (Platform 4 2013, 12). Platform 4 was originally “interested in the idea of archiving memory and how memory gets archived” (Church 2017). Memory Point(s): The Beauty of Remembering outlines the lengthy research process during which the key creatives spent a lot of time with people who had experience with dementia. Their stories manifest in photos and passages, and at times are interpreted conceptually as collages, microinstallations, and as a short film in one instance. Church (2017) explains how the show took on new details over the course of its run: “we usually did some outreach work in each place.” In one instance, “we made flowers with them and we used the flowers eventually on the stage. And we hung them off the parasols onstage. And they had memories attached to them […] on little cards. And we toured that with us” (Church 2017). This example dem­ onstrates the abstract nature of the archiving, as well as the focus on remembering as much as forgetting. The process of developing Memory Point(s) drew stories, photos, and items of clothing from real people. These collected memories were stitched into one fragmented performance, though the memories lent to the production were not necessarily about dementia. The composition of the work is almost a communal version of what Flora talks about in Autobiographer: instead of “stories get[ting] steadily larger” in a linear way, “filaments thread between the most disparate of things” (Wilson 2012, 17). The sequence of the work Memory Point(s) makes use of the building as a whole to stage a metaphor for the mind. As Church (2017) explains, “the promenade idea and the going around the backstage area is […] a very obvious analogy with the brain and the mind. […] Different bits of your mind are different rooms in the building.” Gardner (2013) also finds that “[t]he theatre – long corridors, foyers, dusty dead-ends, unexpected nooks, empty stages, dressing rooms and lighting boxes – becomes a metaphor for the mind.” In this way, the pockets of installation become sites of memory throughout the brain. Following the analogy, some parts of the brain are foggy and others brightly lucid, and music permeates throughout. If dementia has affected this metaphorical brain, then the restrained use of the spoken word as a mode of meaning-making is compatible. Instead, the piece facilitates experiences with the visual, auditory, and physical, allowing meaning to transcend prescription and be individual to each audient. To accompany the promenade format, audience members are given headphones that deliver a recorded soundtrack throughout their passage. Musicians are situated around the building, sometimes in unexpected places: at the top of the fly tower and underneath the stage. Layering often occurs between the recorded audio, live

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music, instructions from two guides, and the visual details throughout the work. Two performers who act as theatrical museum curators facilitate the tour. This lends the archived stories a sense of ceremony and heightens the beatification of the memories. In an interview, Church explains that there was an interaction between the two of them. So it looked like they were friends or lovers or they could be brother and sister. They could be a butler and a housemaid […] there’s a whole lot of different things that they could be imagined to be. (Church 2017) In their more performative form, the two do speak, but because they have to communicate over the headphones, they also have an acquired gestural language. This aspect of the performance parallels the decline of speech faculties in people with dementia. As people with dementia lose their linguistic expression, they may begin to use compensatory physical cues, for example, “pantomime, ges­ tures, facial expressions, body postures, and exaggerations in paralinguistic fea­ tures” (Orange 1991, 178). In general, though, Memory Point(s) mostly lacks a clinical narrative of dementia. Adaptations such as the gestures are accessibility measures more than markers of dementia. The reduced spoken word overall assists in keeping the work open to interpretation. The pair of guides are intended to function “like a kind of beautiful memory” (Church 2017) as au­ dients project their own memories or imagined stories onto them. That the audience could “project their own stories onto those two characters” (Church 2017) demonstrates the intention of Memory Point(s) to encourage its participants to actively engage with the content. The work contains further—and more embodied—examples of this positioning of its audients to engage. The performance begins to draw to a close as the small group of audients are invited into in a dressing room to don costumes. They receive a five-minute call, as though they were actors, familiar with this environment that was previously to them a private area of a public building. They are then taken onstage where a collection of theatrical accessories—for example, feather boas and hats—awaits. They have a group photo taken and tea and cake are served on the stage. The band plays and the audience is encouraged to dance. By this stage, the creators of Memory Point(s) hope that the group has formed a bond over the course of the performance (Church 2017). Yet, despite the feeling of familiarity the creators may have hoped for at this point of the work, Nicky Hatton—who attended the Southbank iteration—describes a different sensation: There is a party atmosphere but I feel quite exposed, dressed up, standing centre stage and posing for a photograph with my fellow participants. My awkwardness increases when I am encouraged to join hands and dance with another person. There is something a bit odd about being paraded to an empty

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auditorium. I feel vulnerable and I realise, that this is because I don’t know what is coming next. As I look out onto the empty seats in the theatre I am blinded by the lights. I have a thought that the sensation I am experiencing might be similar to that experienced by someone with dementia attending a party at a care home. (2021, 45) So, even though Hatton was not at complete ease with the group who were strangers not too long before, the performance afforded her insight into an ex­ perience of dementia. The “more shared than communicated experience” of Memory Point(s) delivers something useful regardless. In addition to sensations of community or awkwardness, this final section is about the audience’s own memory making. It is a memory that makes them an accumulated part of Memory Point(s)—albeit fleetingly. They remain in the bright and gaudy and anachronistic attire and setting of the archived memories, as if they had been absorbed into the work and the shared history it proffers. Finally, the lights go down so they can watch a dance performance. Here, they may retreat back into the role of passive audient. A solo dancer performs a piece inspired by stories of families’ experi­ ences of dementia. This final performed element reiterates the central theme of the performance: dementia and, in particular, remembering and forgetting. The audience leaves the space, waving to the performers, as the dancer continues. When the group leaves the auditorium, they are sometimes led out of the building. As it was at Southbank, they would go out into the darkness of the full-on night-time night on the river Thames. And people coming past them and they’re shouting. […] They were coming out of a fire exit all dressed up and then having to walk around and back to the foyer. Which in itself is quite exposing and disorientating. (Church 2017) Dressed up in the costumes and accessories, the audience would appear as anachronisms to the unaware pedestrians. As per Hatton’s experience, this is not the first moment of the work that could stoke discomfort, but is the first that exposes the audience to the outside world. This choice to expose the audience to the public resonates with discussions in Bree Hadley’s book Disability, Public Space Performance and Spectatorship: Unconscious Performers (2014), in which she discusses public performance as a dimension of disability theatre aesthetics. It opens with: “For people with dis­ abilities, daily interactions in social situations, spaces and places can feel like a series of performances in which their idiosyncrasies are, whether they like it or not, on show” (Hadley 2014, 1). In her discussion of Back to Back’s Small Metal Objects (2005), Hadley describes how the outdoor performance seats its spectators in bleachers, while the actors (some of whom have intellectual disabilities) all but blend into the public. The audience hears dialogue from the microphoned actors

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through headphones and they eventually spot them in the crowd. To the public, though, the actors are merely fellow pedestrians; instead, the audience are the ones on display, the unconscious performers. This brief public performance in Memory Point(s) gives a sense of how, as dementia-themed performance becomes more postdramatic, it may borrow from established disability theatre aesthetics. Hatton similarly observes that Memory Point(s) “‘defamiliarized’ [its audience] by presenting narratives which had not been ‘tidied up’ for a neurotypical audience”4 (2021, 38). Time lost Church describes the connection between the structure of Memory Point(s) and the experience of people with dementia: “Their past, present, future is jumbled up into one place” and recollections may be “flashes of things” (Church 2017). Only snapshots (both literally and figuratively) of lives are glimpsed; the frag­ ments present in the work do not represent a cohesive or linear narrative. More than this, the promenade style of the piece—not to mention theatre’s inherent liveness—and the transient nature of the audients’ relationship with one another, mean that their own interaction with the stories is relatively brief. The “presentness” of live theatre creates a shared time and space that is embodied and immediate yet destined to become mere memory itself, impossible to capture in a meaningful sense. By contrast, the installations feel like capsules of bygone eras, specifically mid- to late-20th century. A general 1950s theme is felt in the costumes and music, though the collected memories were mostly from the 1960s through to the 1980s. This came from a desire to tap into the nostalgia of the 1950s and to feature the tea dresses of the time, as well as the buildings them­ selves. Church (2017) explains that the 1950s aesthetic was applied for a “whimsical” and “lost feel.” A common motif connects many of these stories, which evokes shared ex­ periences. The common thread that emerged in development was the seaside, as many research participants were from Southampton, a port city. Church (2017) reflects that “[m]any of our participants […] had worked at the docks or they’d worked on boats or ships.” As a result, the performance takes on an atmosphere of a “slight seaside melancholic [nostalgia]” (Church 2017). This motif of the sea connects the pockets of installation throughout the performance, which the 1950s attire and theming complements. The soundtrack, too, features the sea throughout the performance, so that this motif of shared, community experience echoes on through the work. Several installations reference family holidays to the sea. Several performance locations would have drawn audience members from a similar port or seaside background with experiences of holidays to the sea. So, it is possible that the memories, though collected from strangers, would have a familiarity to them. As an example, one installation is a dollhouse set among stones and made more whimsical with a string of lights arching over the roof (Figure 6.1). The house has an accompanying film, a photomontage created by

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Figure 6.1 Memory Point(s). The photo is a close-up of a small doll’s house sat atop a pile of rocks. The house is a yellow-beige colour and only its exterior is visible. It has two windows, furnished with a fine diamond-patterned wire. The collection of rocks is warm-toned beiges and rust colour. So, the image has a sense of warmth. A string of small lantern lights is threaded around a wire arch that arcs over the house. Photo credit: Tom House and Gerry White.

Gerald White. Both the physical house and the house in the accompanying film open up to reveal smiling family photos from members of the community groups whose stories informed the work. The scaled-down nature of the house gives a sense of experiencing the story fragments from a bird’s eye view. This detail resonates with Jane’s private moments in 1 Beach Road, where she creates and erodes a tiny cliff of sand with her hands. In Memory Point(s), the audience is both witness to, and disconnected from, the contents of the seaside house. The lost feel that Church cites connects to the central subject of dementia. Commemorating stories that are conspicuously from the past innately alludes to anterograde and early retrograde amnesia. Yet, the variety of eras referenced in Memory Point(s) means that nothing is anachronistic because the archival (re) contextualisation of the details makes time irrelevant. Furthermore, the audience members, as voyagers through this archive, are not simply witness to those caught out of time; they themselves are positioned as existing out of time. Church (2017) describes trying to capture the sensation that “in your memory things become too beautiful and too perfect. And you can’t quite grasp them.” As an example, the use of colour in the design of the work moves between exaggerated

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brightness and faded browns and greys. As Gardner (2013) notes, “[o]n occasion, it’s gaudy with colour and at other times faded and sepia-toned.” These opposing themes each contribute to the performance an otherworldliness. In this way, the aesthetic of the performance was designed to connect the memories thematically and to reflect the beauty of memory. Experiential and dichotic Memory Point(s) is a sensory experience that presents memories as a layered and multimedia archive to accommodate its fragmented content. The non-linear and non-prescriptive connections between the collected stories pair well with the experiential and immersive quality of Memory Point(s). To reiterate, the experi­ ence of the performance is visual and tactile with sound also playing a significant role. While language does feature, the storytelling does not rely on the spoken word. Beginning in the foyer of the venue—which is decorated as an ornate living room—the audience is taken on a journey staged as a heightened backstage tour “around, behind, in, around, outside, inside the corners of theatres” (Church 2017). All five senses are engaged: seeing, hearing, touching, tasting, and no doubt the incidental smells of the ageing theatre building and the food. The audience encounter the work via speech, music, dance, lighting, touch, dioramas, dressing up, touch, tea, and cake. The performance incorporates both passive and active interactions with the installations. The former includes listening to the recordings delivered through the headphones, looking at photographs, and watching a short film about a couple, Gordon and Doreen. Yet, the promenade nature of the work heightens even these aspects to embodied activities. Active engagement with the material involves the audients dressing up, drinking tea, and dancing and opening up microinstallations. About halfway through the tour, the group is led to an instal­ lation of lockers. They are invited to collect a key and each open an individual locker containing a microinstallation inspired by a memory (Figures 6.2 and 6.3). With this action, they are afforded witness to an otherwise private recollection, especially as the use of the key heightens the act of revelation. I have written elsewhere about the especial audience–object relationality in Memory Point(s): the objects featured are more than props that provide visual shorthand [within a story]. They are instead intended to be closely encountered and sometimes physically handled by audiences. They are not only ‘triggered’ (to borrow from Sofer (2003)) by performers. The audience members’ relationalities with the objects are different to those from whom they have been sourced: first, the latter have specific connections to the objects, while they may be generic to audiences, and second, the audience members may or may not have dementia and, therefore, may or may not have experienced the complications that that condition brings to objects. In contrast to other stage objects discussed in this

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Figure 6.2 Memory Point(s). The photo features a set of lockers, stacked six high and two across. The bottom two lockers are closed, but those above are open to show their contents. The lockers each contain a microinstallation. They are indi­ vidually lit; some have a blue-coloured light within, while others have a reddish light, and another has a yellow light. From this distance, the photo does not show specifically what is inside each locker. The stack of lockers sits in a dimly lit room, with a warm light pointed towards the lockers. Photo credit: Tom House and Gerry White.

article, those in Memory Point(s) are not bought or made as props, but are ‘cast’ to perform in the work, imbued with genuine lived history, even if the audience do not know all the details of this history. Without context, audiences are predisposed to project their own memories onto the objects, giving additional facets to the performance of these objects. (Batch 2020, 71–72) As with much of the performance, the dioramas are more “more presence than representation, more shared than communicated experience” (Lehmann 2006, 85). They are also bright, colourful, and ornate, demonstrative of the beautification of memories in their archived state. The work offers dichotic themes of remembering and forgetting, the in/ tangible, individual and shared experiences, and the un/familiar. Remembering and forgetting is the theme at the centre of the work and evoked in the archiving

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Figure 6.3 Memory Point(s). The photo is a close-up of one of the open lockers and the microinstallation therein. Central to the installation is a cut-out image from a photo of a woman leapfrogging over a man. Both figures wear swimming costumes, and the image has an orange hue. Behind them appears to be another family photo, though its contents are difficult to discern. A silvery frame contains photo images. There is a reddish butterfly attached to the top of the frame. In front of the frame is an object shaped like a lotus flower and a small white dome light. A yellow orb in the top left-hand side of the locker lights the scene from within. The installation is warmly lit with yellow and orange tones, though the lotus flower glows green. Photo credit: Tom House and Gerry White.

and beautification of memories in a fractured and decontextualised manner. The performance’s components sit at an intersection of manifestation, fragmentation, and ephemerality. The performance presents memory in its inherent ephemer­ ality as well as in its archived form. Concrete testimonies of memory are manifest in the photos installed throughout the work (particularly those in frames, espe­ cially protected from bending or being lost). The film, too, documents Gordon and Doreen’s story. Another example of the tangible is the vintage clothing and hats that the audience don to pose for their own photo. Despite the resistance against their temporality with the physical embodiment of the story fragments, the performance, in its liveness, yields to the ephemerality of memory. Thus, the dramaturgy of Memory Point(s) makes tangible the intangible. Nevertheless, in the nature of live performance, interactions with the archived stories are fleeting. Additionally, audiences encounter live musicians and dancers, and these

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interactions are similarly ephemeral. The community aspect of theatre (and live arts) spectatorship is exploited to pass the stories on to a new family of strangers. Hatton writes of her experience: There was nothing passive about my journey through the participants’ stories, and I left the performance feeling as if I had witnessed something quite fragile and personal. The production highlighted the responsibility that artists have when presenting the memories of others, while simultaneously suggesting to the audience that the processes of remembering and forgetting are intimately entwined. (Hatton 2021, 45) In addition to themes of ephemerality, the in/tangible, and non-linearity, Memory Point(s) is about the un/familiar. The un/familiar dichotomy is facilitated, first, in the small audience group that engenders closeness with strangers, and, secondly, in the invitation extended to audiences to explore and interact with the memories and memorabilia of real people. The un/familiar dichotomy is also at play as the audience is taken through both public and backstage (private) parts of the building. Even as sites for performance, theatre buildings go largely unseen by audiences. While evoking this dichotomy, the piece disrupts the usual demarcation between people with dementia and people without, first, by focusing on memories above memory loss and, secondly, by drawing audiences into the experience of fragmentation and “time lost.” This is realised most strongly when the attendees dress up and have their own photos taken and their own memories created. In this section, the audience is drawn into the brightly coloured and anachronistic aesthetic of the performance, temporarily sharing in the experience of existing out of time. As part of the un/familiar dichotomy evoked in the closeness between indi­ vidual audients, Memory Point(s) invites an intimacy with subjects of the archived stories. In her review, Gardner (2013) reflects that I have never met any of the couples from Southampton and Eastleigh’s Connections Club and Singing for Brain groups, whose lives, stories and memories are incorporated into the piece, but I feel that I know them as a result of this show. One example of a shared story is another short film created by Gerald White for the performance. The photomontage film is about a married couple, Gordon and his wife Doreen, who was living with dementia at the time of the performance’s development. White composed the film from “a lot of archival photographs of their life together and their children and grandchildren” (Church 2017). A focal point such as Doreen and Gordon’s film reiterates the idea that real people’s ex­ periences have informed the installations. Church describes how the immersive

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experience of the performance facilitates these encounters: “they would be in this incredibly protected environment of intimacy and revelation and beautiful moments. Sharing these people’s family histories. And celebrating their lives in a way.” The quilted effect of the collected stories creates multiple sites of potential connection for each individual audient, while precluding a closed interpretation of the material. As such, each individual “completes” the stories presented. Paul Lewis (2013) finds that “the audience encounter images and sounds that create and trigger memories.” Church (2017) similarly reflects on the: overlap between real people that we worked with and the imaginary characters that we had involved with the piece. […] And it almost gave it a life of its own because people were trying to make these connections between seeing a story of somebody’s real memory about their real family and it was sort of overlapped with a fictional idea. The variety of interactions with the stories—auditory and visual, sensory, and tangible—engenders a relationship to them and, also, relates to different areas of the brain and the way we cognitively experience and store memories. Transcending the dramatic conventions of linearity, cohesion, language, and character, Memory Point(s)’s postdramatic composition facilitates fragmentation without alienating audiences from the collected memories with which they interact tactilely. Disability theatre scholars have recognised that form is crucial in performances about and of disability. Yvonne Schmidt argues that “a disability aesthetic can be described within the framework of the postdramatic” (2018, 203). The postdra­ matic form “broaden[s] the aesthetic spectrum away from what Carrie Sandahl calls a ‘tyranny of the neutral,’ shifting a traditionally rigid concept of acting to a broader aesthetical spectrum of performance, including different sensorial, cognitive, and physical states” (Sandahl cited in Schmidt 2018, 203). To end this chapter by coming full circle, I propose that in-home drama-informed practices could learn a lot from a show like Memory Point(s), to produce work like Spare Tyre’s The Garden. In turn, existing programs such as The Garden can do much to inform publicly staged work about dementia, especially where it seeks to gain stories from people with dementia in a collaborative capacity. Moreover, Memory Point(s) sets a strong precedent for work that reflects dementia experiences, but is not solely preoccupied with representing dementia alone and may avoid a tragic framing. Notes 1 The extended quote from Bella Todd reads: “I began to wonder whether dementia is not so much a theatre taboo as innately anti-theatrical. As the narrative circled along with Mr D’s fractured thought patterns, I was reminded of something Steve Delaney once told me about his cult comic character, Count Arthur Strong […] Perhaps because he taps into an audience’s sense that the worst thing that can happen in the theatre is for an actor to forget their lines, the Count is genuinely difficult to watch.” Todd also

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voices: “I found the performances unnervingly convincing, the music jarring but en­ gaging, the writing true to the disease to the point of over-taxing our patience at times. But the panel discussion proved the importance of persevering when it comes to putting dementia on the stage. One Theatre Royal Brighton regular admitted she had never sat so uncomfortably through a performance. She confessed that she had felt tormented by what she’d seen and heard – but she was glad she hadn’t missed it. And then an elderly lady sitting alone in the front row cut through the polite discussion of “sensitivities” and “issues”, and declared both the performances and the music quite, quite beautiful. Dementia, she emphasised, is an entirely appropriate subject to tackle: it is the defining modern tragedy.” 2 While the “well-made” play has seen several interpretations over its history (dating back to French playwright Eugène Scribe in the 19th century), the well-made play is commonly understood to include an exposition that introduces the setting, characters, and context; scenes that introduce tension and build suspense; and a climax where the dilemmas of the drama reach a critical point, quickly followed by a resolution. 3 Because of its promenade and installation style, I was not able to base my analysis on a script or video recording. Instead, I interviewed Artistic Director Catherine Church who provided descriptions of the components of Memory Point(s). I also drew on the book compiled by Platform 4, Memory Point(s): The Beauty of Remembering, which includes numerous images and pieces of writing that relate to the development of the work. Lastly, I consulted online content ( http://www.platform4.org/memorypoint. htm and https://soundcloud.com/platform4). 4 The term “neurotypical” has been deployed by those on the autism spectrum as a way to describe people who are perceived to think and behave “typically,” according to prevailing social norms. Some people have borrowed the term for dementia advocacy as well. This is not the only concept that dementia scholars have borrowed from the (more established) area of disability theory/activism/performance.

References Basting, Anne Davis. 2003. “Reading the story being the story: Context and content in stories by people with dementia.” Generations 27 (3): 25–29. Batch, Morgan. 2020. “Dementia in dramaturgically hybrid performance and the perform­ ance of objects.” Performance Research 25 (4): 65–73. doi: 10.1080/13528165.2020.1842033 Bay-Cheng, Sarah. 2015. “Virtual realisms: Dramatic forays into the future.” Theatre Journal 67 (4): 687–698. Church, Catherine 2017. “In an interview with Morgan Batch.” 15 June. Created Out of Mind. 2018. “Arti Prashar, Artistic Director and CEO, Spare Tyre Theatre Company.” http://www.createdoutofmind.org/women-behind-dementia/ arti-prashar Danan, Joseph. 2014. “Dramaturgy in ‘postdramatic’ times.” Translated by Ada Denise Bautista, Andrea Pelegri Kristić, and Carole-Anne Upton. In New dramaturgy: International perspectives on theory and practice, edited by Katalin Trencsényi and Bernadette Cochrane, 3–17. Bloomsbury Methuen Drama. Disability Arts Online. 2017. “Interactive performance for people living with dementia to tour theatres and care homes.” Disability Arts Online, 12 September. https:// disabilityarts.online/magazine/news/interactive-performance-people-living-dementiatour-theatres-care-homes/

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Gardner, Lyn. 2013. “Memory Point(s) – review.” The Guardian, 3 July. https://www. theguardian.com/stage/2013/jul/02/memory-points-lyn-gardner-review Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Gordon-Nesbitt, Rebecca. 2019. “Older and wiser? Creative ageing in the UK: 2010–19.” https://baringfoundation.org.uk/resource/older-and-wiser-creative-ageing-in-the-uk2010-19/ Hadley, Bree. 2014. Disability, public space performance and spectatorship: Unconscious per­ formers. Palgrave Macmillan. Hatton, Nicky. 2021. Performance and dementia: A cultural response to care. Palgrave Macmillan. Kontos, Pia C. 2005. “Embodied selfhood in Alzheimer’s disease: Rethinking personcentred care.” Dementia 4 (4): 553–570. Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge. Lewis, Paul. 2013. “Memory points at the Theatre Royal is unforgettable, says Paul Lewis of Your Life Your Style.” Southern Daily Echo, 29 June. https://www.dailyecho.co.uk/ yoursay/blogs/talking_shop/10516928.memory-points-at-the-theatre-royal-isunforgettable-says-paul-lewis-of-your-life-your-style/ Malone, Niamh and Donna Miles. 2019. “Never ending story and forgotten futures: Moving beyond decline/renewal binaries in dementia care.” Research in Drama Education: The Journal of Applied Theatre and Performance 24 (1): 53–66. doi: 10.1080/135 69783.2018.1544068 Orange, Joseph B. 1991. “Perspectives of family members regarding communication changes.” In Dementia and communication, edited by Rosemary Lubinski, 168–186. B.C. Decker Incorporated. Platform 4. 2013. Memory Point(s): The beauty of remembering. Platform 4. Read, Alan. 2013. Theatre in the expanded field: Seven approaches to performance. Methuen Drama. Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Schmidt, Yvonne. 2018. “Disability and postdramatic theater: Return of storytelling.” Journal of Literary & Cultural Disability Studies 12 (2): 203–219. Sofer, Andrew. 2003. The stage life of props. University of Michigan Press. Spare Tyre. 2013. “Once upon a time.” YouTube video. Uploaded 23 March. https:// www.youtube.com/watch?v=MwyVymgO7lY Spare Tyre. 2017a. “The Garden: For people living with dementias.” https://www. sparetyre.org/whats-on/projects/the-garden-installation-for-people-with-dementiaand-their-carers Spare Tyre. 2017b. “The Garden: For people living with dementias – Photos.” https:// www.sparetyre.org/watch-and-listen/the-garden-installation-and-performance-forpeople-with-dementia-and-their-carers Spare Tyre. 2017c. “The Garden: For people living with dementias – Trailer.” https:// www.sparetyre.org/watch-and-listen/the-garden-immersive-installation-for-peopleliving-with-dementia

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Stenhouse, Rosie, Jo Tait, Pip Hardy, and Tony Sumner. 2013. “Dangling conversations: Reflections on the process of creating digital stories during a workshop with people with early-stage dementia.” Journal of Psychiatric and Mental Health Nursing 20 (2): 134–141. doi: 10.1111/j.1365-2850.2012.01900.x Tate. 2018. “Forgotten Futures.” https://www.tate.org.uk/whats-on/tate-liverpool/ forgotten-futures Taylor, Nicky. 2019. “The origin of dementia friendly theatre performances and the role of people living with dementia as creative consultants.” Research in Drama Education: The Journal of Applied Theatre and Performance 24 (1): 90–95. doi: 10.1080/13569783.2018. 1548273 Todd, Bella. 2010. “Are we scared of seeing dementia on stage?” The Guardian, 25 May. https://www.theguardian.com/stage/theatreblog/2010/may/24/alzheimers-theatrelions-face Tolson, Debbie, Karen Watchman, Naomi Richards, Margaret Brown, Graham Jackson, Amy Dalrymple, and Jenny Henderson. 2015. “Enhanced sensory day care: Developing a new model of day care for people in the advanced stage of dementia: A pilot study.” University of the West of Scotland. doi: 10.13140/RG.2.1.1474.2568 Wilson, Melanie. 2012. Autobiographer. Oberon Books.

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) Autobiographer (2011) by Melanie Wilson (England) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) Memory Point(s) (2012) by Platform 4 (England) Really Old, Like Forty Five (2010) by Tamsin Oglesby (England) RUFF (2012) by Peggy Shaw and Lois Weaver (Split Britches) (US) Small Metal Objects (2005) by Back to Back (Australia) Sul Concetto di Volto nel Figlio di Dio (2010) by Socetas Raffaello Sanzio (Italy) The Garden (2015) by Spare Tyre (England) The Lion’s Face (2010) by Mahogany Opera Group (England)

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Problematising Dementia Sul Concetto di Volto nel Figlio di Dio

When Socìetas Raffaello Sanzio’s Sul Concetto di Volto nel Figlio di Dio showed at Paris’s Théâtre de la Ville in 2011, it was met with fervid protesters connected to a far-right Christian organisation. In an open letter by Théâtre de la Ville, they report that protesters attempted to prevent access to Théâtre de la Ville by blocking the doors, assaulting and threatening the audience, by pouring motor oil, using tear gas and stink balls, while their accomplices having bought tickets, interrupted the performance by occupying the stage and by deploying a streamer bearing the words: ‘No more Christianophobia.’ (Théâtre de la Ville quoted in Barker 2011) The protests have been compared to an incident where “fundamentalist elements of the Hindu community [attempted] to censor the presentation of Back to Back’s Ganesh Versus the Third Reich in the Melbourne International Arts Festival” (RealTime Arts 2011). In both cases, objectors to the performances were offended by the use of religious imagery. In Ganesh Versus the Third Reich, it was the deity’s appearance alongside that of Adolf Hitler in a play about disability and eugenics, and in Sul Concetto di Volto nel Figlio di Dio, it was the use (and perceived ruination) of a portrait of Christ in a play about dementia and senility. Disability and religion have a complex history. Julia Watts Belser recognises how religious constructions of disability have influenced cultural ones. Her unvarnished summary reads: Ancient and contemporary communities frequently portray the ideal, utopian society as a place without disability. Christian, Jewish, and secular eschatologies are often potent sites of disability erasure, forms of eugenic imagination that envision liberation through the denial of bodily and sensory difference. (Watts Belser 2015, 177) Imagining a so-called utopia without disability is a convenient way to alleviate the societal responsibility to make the world liveable and accessible for all. Of the DOI: 10.4324/9781003282037-13

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(broad) models of disability, the religious/moral model is the oldest. Retief and Letšosa explain that this model has roots in “a number of religious traditions, including the Judeo-Christian tradition” (2018, 2) and one of its troubling tenets sees disability as divine punishment for person’s sin/s. “Judeo-Christian tradition, prevalent among Europeans during and after the Middle Ages, taught that people with disabilities were expressions of God’s displeasure” (Mackelprang and Salsgiver 1996, 8). There are some similar ideas in other world religions; for example, the Buddhist notion of karma views disability as a punishment for wrongs in one’s previous life (Wijesiri 2022).1 I primarily focus here on churches under the Christian banner because it is a portrait of Jesus Christ that features in the performance under discussion, but the confronting history of dementia in religion is not limited in this regard. Courtney Wilder provides a useful summary of two divergent interpretations of the Christian Bible in relation to disability: The existentialist interpretation of the biblical texts offered by Protestant theologian Paul Tillich is deeply problematic in its treatment of disability, especially mental illness. Theologian Nancy Eiesland argues against a conflation of sin and illness, and proposes the symbol of the disabled God as a source for a liberation theology of disability. (Wilder 2012, 202) Put simply, in views like Tillich’s, physical impairment and neurodiversity would appear to be incompatible with the Christian notion that humans are made in God’s image.2 This fits well with Cooley’s (2007) argument that a person with dementia’s death by suicide would be a “moral” choice (Chapter 3). Many Christians today do not believe in disability as a punishment for one’s sins. Rosalie Hudson finds that “In God’s gracious generosity, our identity does not depend on who or what we are in terms of our capacities or incapacities” (Hudson 2004, 96). In a discussion of ageing and spirituality, she affirms that “Ageing for one person will be different from ageing for another person, each one of us equally whole because we are equally loved by God” (Hudson 2004, 95). Others agree and some see religious views of the person as more embracing of disability than the prevailing (secular) societal one: “Religious affirmations of the meaning and value of human life transcend secular criteria of intelligence and productivity and offer a corrective to popular views of persons with dementia” (McFadden, Ingram, and Baldauf 2001, 82). Still, even in contemporary scholarship, there are echoes of earlier views that consider dementia/disability to be a result of a lack of religiosity, veiled as they may be by research. Harold Koenig, Dana King, and Verna Benner Carson claim to present “latest research examining relationships between religion/spirituality (R/S), Alzheimer’s disease, and other dementias” (2012, 378). They list some medical correlations that are thought to lead to dementia including hypertension, diabetes, and high cholesterol, as well as psychosocial factors including “depression, lack of

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positive emotions, low purpose/meaning in life, psychological stress, lack of social engagement, and personality” (Koenig, King, and Carson 2012, 382). They then make tenuous links between these contributing factors and a lack of religiosity or spirituality. For example, Personality factors that place the individual at risk for dementia are different depending on the type of dementia. For vascular dementia due to multiple strokes, it is the angry/hostile personality style and low agreeableness that places an individual at increased risk. As documented in the last chapter, there is ample evidence that R/S persons are less likely to exhibit these personality traits and so ought to be at lower risk for stroke and for vascular dementia. (Koenig, King, and Carson 2012, 384) They conclude: Of the thirteen modifiable biomedical and psychosocial risk factors that place an individual at higher risk for dementia, R/S involvement is related in a favorable direction to eleven of them. We would expect, then, that R/S ought to be related to a lower risk of developing cognitive impairment and dementia (including Alzheimer’s disease), and if dementia does develop, R/S involvement may help slow the progression of the disease. (Koenig, King, and Carson 2012, 385) Essentially, what the two above extracts conclude is that a lack of religiosity is more likely to lead to unfavourable personality traits, which they argue can lead to certain types of dementia. Thankfully, other research about religion and dementia is more proactive, seeking to understand the value that spirituality may offer to people with dementia in maintaining their social ties and sense of identity. Some studies show the helpfulness of faith for those with early-stage dementia (Katsuno 2003) and for those in caregiver roles. Meanwhile, others found that “no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression” (Rathier et al. 2015). Susan Crawford Sullivan and Renée Beard (2014) provide a useful summary of the literature including Pargament’s (1997) framework of positive and negative religious coping. Examples of the latter include “feeling punished or abandoned by God, exhibited worse mental health and higher levels of perceived burden” (Crawford Sullivan and Beard 2014, 71). Sullivan and Beard’s own study of participants with early Alzheimer’s disease and mild cognitive impairment demonstrated positive religious coping. The relationship between dementia and spirituality remains an interesting one and one I believe should be effectively problematised. Peter Kevern (2010) and Maria Bons-Storm (2016) respectively grapple with the questions “What sort of God is to be found in dementia?” and “Where is God when dementia sneaks into our house?” Despite the provocative

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nature of these questions, both find that spirituality is a net positive. In my interpretation, Sul Concetto di Volto nel Figlio di Dio poses similar questions, though suggesting a far less hopeful response. Lastly, beyond a focus on individual faith in the face of cognitive decline, some religious communities are showing progress in their inclusion and embrace of people with dementia. One Reverend Linn Possell of the United Church of Christ provides a list of “worship adaptations.” The adaptations include delivering sermons at a considerate pace, using familiar songs and/or a single largeprint song sheet to mitigate any difficulty with motor tasks (Possell 2019). The list has similarities to relaxed performances (for audiences) and adaptive performances (for performers) pioneered by the disability theatre sector. Rev. Possell’s guide appears in the book Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy, and Faith Communities (2019). The phrase “dementia-friendly” has also been adopted by theatres. The Leeds Playhouse3 was reportedly the first theatre in the UK to open “dementia-friendly” showings to the public in 2014 (Hatton 2021). Importantly, the Playhouse consulted with people with dementia on effective amendments: “lighting, sound and visual effects, re-working sequences of stage action and adding clearer signage to Front of House areas” (Hatton 2021, 46; Taylor 2019; Taylor 2016). Dementiafriendly theatre, in turn, is akin to the “relaxed” performances that seek to welcome people on the autism spectrum, where the auditorium is kept lit and audients are able to come and go and move around throughout the performance. Religious themes in performances about dementia A small group of contemporary performances about dementia also interweave religious/spiritual themes, though none deploy the themes in a way that induces shock like Sul Concetto di Volto nel Figlio di Dio. Postdramatic work: Samantha Bews

More recently, Australian artist Samantha Bews4 created Breaking Bread: A Dementia Awareness Café (2018). It is a promenade theatre work—that could also be described as a performance installation—that audiences encounter experientially, one that is not driven by story in a traditionally dramatic sense (see Chapter 6 for a similar aesthetic in Memory Point(s)). Breaking Bread is inspired by Bews’s mother’s dementia and is deeply connected to John Swinton’s book Dementia: Living in the Memories of God (2012) and his interrogation of the terms “higher” and “lower cortical function.” Bews speaks of wanting to counter the “prejudice inherent” to the biomedical model (2021, 182). Pedestrians and patrons of Good Loaf Sourdough Bakery Café in Bendigo in Victoria, Australia would walk through the installed in the bakery’s forecourt. The installation is primarily constructed of cardboard, exploiting its many textures, and at its centre, the audience finds a handmade book, the Loss and Nourishment Book, “a collection of

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edited interviews with people experiencing the effects of dementia” (Bews 2021, 182). Bread offers an experiential element in that audiences could take a bread roll and “break bread” and chat about the installation with others in the forecourt. Bews explains that “[t]he symbol of bread is shared across cultures and religions. For the purposes of the installation ‘bread’ could be associated with equality and communion (Christianity); connection between the divine and mortal (Judaism); or authenticity, neighborhood and goodness (secular)” (2021, 187). The bread is, therefore, an important symbol in the work in the way that it carries religious meaning but is also accessible by agnostic/atheist audiences. Bews describes how people with dementia are “still held in the greater conversation” and we are all “spoken into being in relation to those around us.” These phrases that have resonance in religious discourse, as per Michael E. Williams’s book Spoken into Being: Divine Encounters Through Story (2017).5 Since Breaking Bread, Bews has continued to explore the experience of her mother’s dementia within a religious frame: The Language My Mother Speaks (2019), which in its second iteration became Elements (iteration 2) (2021), is a promenade theatre work. The audience tour through installations including video, projection, a seat next to an empty reclining chair, and a scene of a hospital bed covered in dirty dishes from several meals. Bews explains that The Language My Mother Speaks was developed from the time I spent sitting beside my mother as she lived with advanced dementia. At that stage in her life she could no longer feed, dress, or toilet herself; stand, see or speak. However, in the quiet of her room, at the end of the corridor in a dedicated dementia hostel, I came to understand that she lived within consciousness in ways not readily admitted by modern Western society. (Bews in Bews et al. 2021, 227) Here, the nature of Bews’s work is more spiritual than strictly religious in the sense of institutional faith. Her description is a clear challenge to construction of dementia according to societal views that prioritise cognition. In a recorded conference presentation,6 Bews speaks about the research driving The Language My Mother Speaks and Elements (iteration 2). She draws on areas of scholarship as broad as plant intelligence, the multiple dimensions theorised in quantum physics, and a finding by a group of neuroscientists of 11 dimensions in the human brain. She also speaks about Saint Teresa of Ávila, whose work The Interior Castle envisions the soul (consciousness) as multidimensional. A description to this recording explains: In the quiet of their time together the artist came to understand that her mother lived at another level of consciousness, one that we in the postindustrial West, with our priorities of progress, function and individuality, have become desensitized to. The artist posits that the person with advanced

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dementia ‘speaks’ a language we have forgotten how to hear, a language more akin to the silent communication of plants than logical or rational speech. It is a language equally poetic, scientific and spiritual. (Bews in Kuepfer 2021) There are resonances here with Shabahangi’s (quoted in Nicholson 2011, 59) notion of presence outside the consensus of reality. Bews’s emphasis on silent communication evokes theories of embodied selfhood (Kontos 2005; Sabat 2001). In Elements (iteration 2), Bews and her collaborators played more with ideas of embodiment: “Earth, fire, air, water and the chemical elements CHNOPS describe the ‘substratum’ of my mother’s consciousness. This work explores the elemental materiality of my mother’s being and how it plays out within her consciousness” (Bews et al. 2021, 227). Some religious significance still underpins Bews’s conception of the work: Water drips, drop after leaky drop, into the great Hall of Emptiness, an inner chamber of the psyche, rarely visited, but where loneliness screams in terror. My mother wrings her hands, just as Pontius Pilot washed his, just as many of us wash our own of people with dementia. (Bews et al. 2021, 228) Here, Bews turns a moral perspective of dementia back on those without the condition, in contrast to Koenig, King, and Carson (2012), for example. This is more in line with a dimension of the moral model of disability that determines that we should sympathise for and help people (essentially, take pity on) disabled people in order to gain good Karma (Wijesiri 2022). Bews’s work may be imbued with spiritual significance, but the overall representation of religion appears to be quite subtle, there for those who may connect with it. Dramatic theatre: Abi Morgan’s 27

Other performances position religion in contrast to science.7 Abi Morgan’s 27 (2011) is set in a nuns’ convent and, along the way, explores the relationships between science and religion (Batch 2024, forthcoming). The nuns are part of a longitudinal study to test clinical signs of decline or lack thereof against plaques and tangles in the brain after death (based on a study by Snowdon 2001). The nuns are tested over several years, their noviciate autobiographies are analysed, and they ideally donate their brains after their death. Of course, some withdraw their consent for their brains to be removed as the study goes on. Mother Superior Sister Miriam describes the brain as “the very essence of being, of who we are” (Morgan 2011, 21). Her second in command, Sister Ursula, reasons that “We were born to serve our fellow man, I can’t think of a better way of helping him, Miriam” (Morgan 2011, 24). A science–faith debate comes about when one of the nuns, Sister Ruth, believes a miracle has occurred. Another sister in the study is found to have the tell-tale neurofibrillary tangles of Alzheimer’s in her

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brain after death, yet her test scores showed no dementia when she was alive. Reacting to an article published by one of the researchers, Ruth says, “It’s the discovery of miracle that I was just sorry he didn’t flag up” (Morgan 2011, 42). She tells one of the researchers: I understand you believe that your work may one day find a cure for Alzheimer’s. That’s commendable. But this need for science to colonise this miracle for itself … Don’t you ever think that just maybe there is no scientific answer, that the answer is God’s work? (Morgan 2011, 43) Not all the nuns believe this case to be a miracle and there is a small disagreement between Ruth and Ursula over this matter. Set over several years, Miriam begins to demonstrate cognitive decline, and Ursula struggles to accept it. URSULA: RICHARD: URSULA:

There’s no justice if Miriam – It’s nothing to do with justice – Her faith shone – The distant ring of a bell, passing just outside of the office … shines. (Morgan 2011, 58–59)

As Miriam becomes more and more unwell, Ursula is troubled that Miriam has been refusing communion: “Not to accept His sacrifice, that would be enough to drive me out of my mind” (Morgan 2011, 77). Ursula perceives a change in Miriam’s religiosity as her dementia advances. Plus, Ursula’s own faith is shaken by Miriam’s dementia and eventual death and by her own probability of developing dementia. One of the researchers, Jonathan, speaks to Ursula about the urge to publish their preliminary results: […] unfortunately the rest of the world just want a few certainties – … in this strange and difficult world? You more than anyone must understand that. Your faith remains so central in the face of the unknown. It makes one feel better to know there are people like you, places like this in the world. (Morgan 2011, 80) The discourse both draws a binary between faith and science, but also compares the two in the way they each provide people comfort in the face of the unknown, in this case, dementia. With the above themes and perspectives on dementia in the context of religion in mind, what is most interesting to me about Sul Concetto di Volto nel Figlio

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di Dio is that it pulls no punches in its representation of dementia. I do not weigh in on whether its use of Christ’s image is offensive, though Semenowicz (2016) makes a compelling case that, because the work is intended symbolically and not literally, it is not inherently offensive. Even so, the question of being made in God’s image and the idea that even the most faithful (as in 27) can develop dementia (despite how Koenig, King, and Carson (2012) oversimplify it) are effective enough provocations to problematise the subject matter of dementia. Sul Concetto di Volto nel Figlio di Dio Director Romeo Castellucci, with his company Socìetas Raffaello Sanzio, worked in collaboration with Giacomo Strada to create the hour-long show, Sul Concetto di Volto nel Figlio di Dio8 [On the Concept of the Face, Regarding the Son of God] (2010), hereafter Sul Concetto. The performance leans into the anguish of dementia experiences and layers the everyday with the allegorical and the spiritual. In the work, dementia is not directly referenced but is evoked in themes of old age, senility, and impaired language. The play also explores family dynamics and care partnering including parent–child role reversal and dependency. Its imagery also raises themes of dignity, humanity, and existential anxiety. Its “language”—its mode of communication—is a largely visual one. That is, the dialogue does not tell the story as much as the visuals and actions of the performance. In this way, the dramaturgy demotes spoken language, as well as making the meaning less prescribed and more open to interpretation. The progressive lessening of language also reflects the dementia pathology and the work echoes the social and familial implications of this reduction through an analogy of spiritual struggle. Hyper-realism to iconographic metaphor Sul Concetto can be described as hyperrealism becoming religious iconography. (Hyperrealism here refers to a largely mimetic opening that adds an olfactory dimension to make the scene uncomfortably realistic.) The piece is a performative triptych constructed in three scenes. It opens with a clinical representation of senility within the context of a father–son relationship, but with its second and third sequences, turns towards a visual and sensory language. Briefly, the three sequences are: a son and father dealing with the latter’s bowel incontinence, followed by a group of boys throwing stones at the portrait of Jesus Christ, and in the final image the portrait itself “performs” by way of multimedia elements. The face of Christ in Antonello da Messina’s painting Salvator Mundi (1465–1475) oversees the work throughout. In the first sequence, the front of the stage is set up as an apartment including a couch, coffee table, desk at the centre, and a bed at stage left. The floor and set pieces are primarily a spotless white, an almost clinical white (suggestive of caregiving and institutionalisation). The audience can assume it is the adult son’s apartment. The back half of the stage acts as a kind of placeless space. As

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established in Chapter 4, the domestic space is a common setting for dementia narratives, and one that is transformed by dementia and the care partner duties that can take place there. Blunt and Dowling (2006) describe the unhomely nature of the home as hospice. In narratives set in domestic spaces, characters with dementia tend to be isolated from the outside world. In Sul Concetto, the two men are isolated even from other familial subjects. Their seeming remoteness—particularly in the vast, largely bare stage—accentuates the confronting nature of the work. The stark white of the set is soiled when the father has a bout of bowel incontinence. Bowel incontinence can be a symptom of advanced dementia, so the confronting scenario contributes clinical signage. When the father “loses control of his bowels” (Eve 2011), the son, who was on his way out, has to clean up his father. The smell of faeces is simulated during this part of the performance so that the audience is immersed in the hyperrealist action on the stage. Most dementia narratives, while tragic in their framing, tend to omit more confronting bodily occurrences like this one. Exceptions exist in the horror film genre, where the naked ageing body is featured in ways intended to shock, including emphasis on sagging skin and thinning hair (Batch and Ryan 2023, submitted). The generic conventions of the horror film and the provocative nature of Castellucci’s work facilitate the exploration (and sometimes exploitation) of these aspects of ageing and dementia. The action of the Sul Concetto performers up to this point is largely mimetic. Semenowicz writes: The naturalism of this scene embarrasses the viewer. It is impossible not to feel disgusted. However, this feeling is mitigated by the gentleness with which the son speaks to the father. The son’s service is here both a duty and an act of love. (2016, 78) The scene is an uncomfortable one, both for its unveiling of taboo images of ageing and at-home care and for the “palpable smell of faeces wafting over the audience” (Eve 2011). “It is deeply tragic in its naturalism, but the audience are shocked. Some giggle, not knowing how to respond. Others leave; are they offended, or frightened at this glimpse into their own potential future?” (Eve 2011). After the first clean-up, the son must repeat the action twice more. The father continues to have diarrhoea and make a mess. The older man repeats the phrase “I’m sorry” (Brantley 2013). While his exclamation is expected under the circumstances of this first scene, his repetition of it begins to create a loop, which both infuriates and evokes pity from the son. The incantatory quality of the father’s repeated apologies could suggest repetitive verbal behaviour (Guendouzi and Müller 2006, 169–170). The repetition also interrupts the established reality of the performance and lifts the work out of hyperrealism and into the postdramatic. The cyclic scene, accompanied by the acrid smell, lifts the performance out of a conventionally representative style. The son’s response to this series of events

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evolves from understanding to frustration. The repetition of this sequence, coupled with the son’s weakening patience, evokes a sense of the chronic deterioration associated with dementia, particularly age-related sub-types. As a staged action, the event appears to happen in real time. Yet, this sequence could be representative of an extended passage of time, over weeks or months. Castellucci himself has identified that: “The main subject of the performance is time. The nature of time that changes the nature of things, that transforms the perspective of the spectator” (Castellucci quoted in Spill Festival 2011). Whatever the structure of time in the performance, this interaction around cleaning up and apologising for the bowel incontinence is the only direct interaction the audience sees between father and son. Within the limits of this performance, the son is carer (not quite a care partner) and the father is a burden. Overseen by Christ, the interaction takes on religious significance. The most obvious readings are in the reversal of the father and son relationship in the Christian tradition. The father, here, begs for forgiveness from the son. The son does, as with the “Eli Eli lama sabachthani” of the bible, temporarily curse the father, but here, it is not He who forgives. It is He who sins, He who deliberately pours faecal matter across the world stage. (Eve 2011) What Eve identifies here is a moment where the son kneels behind his father as he tries to clean him up. The visual juxtaposition of faeces against the stark white set evokes the juxtaposition between the father’s situation and the purity of the home, signifying unflattering ageing as a disruption to lifestyle, the unhomeliness of the home as hospice. Dementia care homes are often visualised as (and sometimes realised as) “non-descript buildings and anonymous wards with lots of white coats, non-stop blaring television, and superfluous sedation” (Sanjay Gupta quoted in Gibson 2020, 196). Clinical settings of dementia narratives are discussed in more detail in Chapter 2. The staging is realistic, yet the portrait of Christ looming behind undercuts the mimesis of the foregrounded set. The naturalism is particularly destabilised when the son steps into the placeless space to appeal to the portrait at the end of the first sequence. He kisses the lips of Christ saying, “Jesu, Jesu.” From here, the themes become more metaphorical as the work breaks away from story and location.9 The concept of place is discarded completely after the opening sequence, and the staged events become more image than scene. The religious image, which was a mere witness to the scene between father and son, now becomes almost a character in the performance. In this second image, the performance becomes more postdramatic in its abandonment of characterisation and story. The father sits on the white bed, at one side of the stage. A young boy with a backpack enters, stops centre stage to unzip the bag, and empties out a pile of grenades. The boy pulls the pin out of a grenade before pelting it at the portrait of Christ. Gradually, more children

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enter—without introduction—to throw grenades at the portrait of Jesus.10 Christ’s face remains impassive, representative of either His steadiness or his frustrating inaction, depending on how one interprets the scene. Young boys continue to populate the stage and discarded grenades litter the space. During this time, the sound design operates in tandem with the abstract imagery to create an overwhelming environment. Scott Gibbons’s sound design includes screeches, booms, and crashes that are distorted and echoed. The echo and distortion makes this soundscape increasingly dense. Semenowicz recognised another sound layered into this soundscape: Soon, amidst the processed, electroacoustic, unpleasant explosive blasts, one can discern Christ’s name. The whisper repeats, multiplies itself. It starts to turn slowly into Urmas Sisask’s hymn from Gloria Patri, ‘Omnis Una.’ In this way, the blasts are slowly transformed into music praising Christ’s name. (2016, 82) The nonrepresentational action in the scene inhibits explicit meaning-making and offers no relief from the sensory inundation. Neither the imagery nor the auditory scape lends itself to a recognisable source; they are decidedly abstract. To me, the sound and image do evoke a battle analogy, a common metaphor used to describe the caregiving experience (Innes 2009). The grenades then appear as detritus on the stage. The lighting goes down as the children continue their assault on the portrait. The scene has developed a rhythm of repetition, like the first scene. The simplicity of the action in this sequence, composed of the overwhelming dramaturgy plays with the density of signs, a postdramatic element (Lehmann 2006, 89–90), to evoke a dichotomy of reduction and inundation. The accumulation of grenades onstage becomes detritus, which further contributes to the presentation of inundation. The father then walks among this debris. Billington (2011) finds the “sudden leap from mundane medical realism into apocalyptic iconoclasm” to be an unfavourable quality of the work, inferring it as Castellucci being ostentatious. Perhaps for some, though, the rapid change from hyperrealism, moving into a kind of abject repetition, and becoming an ordeal where nothing is clear enough to grasp, may feel like an apt reflection of dementia experiences. Sul Concetto feels as though comprised of what Mel Hall and Pat Sikes (2017) may call “inadmissible stories” about adult children whose parents have dementia, whether it is cleaning a family member after a bout of bowel incontinence or the feeling of being in battle or of being overwhelmed. It seems apt then that the show is driven by image and metaphor. Hannah Zeilig (2014) writes about the many analogies of dementia, including “millennium demon,” large-scale disasters such as tsunamis (to describe the societal impact), warfare (to describe the caregiver experience), and “the funeral that never ends” (cited in Downs, Small, and Froggatt 2006, 194). Zeilig recognises the use of metaphor as an attempt “to explain difficult concepts” (2015, 15). Sul Concetto

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plays on this aspect of dementia experiences as something difficult to talk about as well as the aspects of dementia that are thought to be “inadmissible.” In the final 15 minutes of the performance, the portrait alone “performs.” In this final image sequence of the work, the portrait is subjected to creative lighting and projection while the stage space remains dark. The face is warped and bulges before tearing is simulated and what is assumed to be excrement seeps from the eyes. However, Semenowicz has a behind-the-scenes insight: “Men climb behind it and pour a dark liquid over the canvas—in the director’s concept, it is ink symbolising the Bible, underscoring the theological meaning of the production” (Semenowicz 2016, 83). Following the scenes that have played out onstage, many could mistake the “ink” for “excrement.” Either way, the portrait, the face of Jesus Christ, is desecrated. Thus, the portrait becomes a character in itself. It gains further dramaturgical significance: the words “you are not my shepherd”11 are projected, but the word “not” fades in and out, “as if Castellucci has left the decision to the viewer” (Semenowicz 2016, 84).12 Eventually, the words fade out completely and the light comes up on the stage to reveal a spill of faeces on the white floor. The concluding image is of waste, despite the overseeing face of Christ, which has now deformed from its initial appearance. The incontinence and faeces symbolise a threat to dignity, and human life as waste, yet Christ’s image historically represents eternal life and divine design. Between these incompatible images is a comment on the indignity and waste of human life despite the Christian paradigm that “God created mankind in his own image” (Genesis 1:27). The fluctuating declaration of the debased portrait emphasises the lack of resolution. Just as the previous two scenes in the triptych have gone unresolved, this final part ends the performance without providing resolution or catharsis. A failed deus ex machina The Latin phrase deus ex machina translates roughly to “god from the machine.” The concept has roots in ancient Greek tragedies and refers to the arrival of a divine character on the stage to resolve the conflicts in the narrative (Rokem 2017), essentially, to provide catharsis. The phrase “from the machine” comes from the “crane-like” technology that would physically lower the deity character onto the stage (Rokem 2017, 781). Today, a deus ex machina has come to refer to a facile ending to a story that cannot be resolved by the characters in the story (for example, an unlikely saviour arrives at the perfect moment or it is revealed that “it was all a dream”). Historically, even Aristotle criticised the use of a divine intervention in drama. In his view, “within the action there must be nothing irrational. If the irrational cannot be excluded, it should be outside the scope of the tragedy” (Aristotle quoted in Rokem 2017, 781). Given the insoluble nature of dementia, how should a dementia narrative end? Is it to follow a tragic framing, in line with the “right kind” of dementia story (Gibson 2020), or is it to ambiguously erase the character with dementia to alleviate the “burden” on

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family and friends (as some of the performances discussed in this book do)? Chapter 3 describes how Mimi, the robot nurse with white wings in Really Old, Like Forty Five, descends into the nursing home. Mimi and the automated care she represents are intended to ease the wicked problem of an ageing population and the shortage and costly nature of high quality dementia and aged care. Mimi’s quick destruction easily dismantles the deus ex machina in that play. In Sul Concetto, the son appeals to the portrait as though praying for a deus ex machina to untangle “the otherwise insoluble predicaments of the humans” (Rokem 2017, 781). The deity is visible throughout the show and does not intervene, remaining still until the final sequence. The apparently unattainable deus ex machina in Sul Concetto emphasises the problematic nature of the dementia subject matter. Semenowicz (2016) also acknowledges how the portrait also “fails” the audience in a sense. First, in the opening scene, “The image ordains the gravity of the stage event, but cannot stabilise that which takes place inside the viewer, who is confronted at the same time with revolting stage activities” (Semenowicz 2016, 78). Second, throughout the performance, “He keeps troubling us with his presence. Not only does he control our reactions, he also irritates us with his symbolic surplus, inaccessibility, unchangeability, lack of affection, and predominantly with his persistent silence” (Semenowicz 2016, 83). Despite the offence felt by the protesters in Paris, the failed deus ex machina perhaps has a wide resonance in a largely post-religious society. Billington—who, incidentally, did not personally connect with the performance—assumes that “Castellucci is saying something about the yearning for faith in a godless age, about the continuation of the process by which sons sacrifice themselves for fathers and about the links between the spirit and the-all-too fallible flesh” (2011). As opposed to the usual focus on story, personhood, and dignity in many dementia narratives, Sul Concetto intentionally problematises the condition. The suggestion of a failed deus ex machina complements the provocative imagery and lack of resolution. Sul Concetto contains hints of what many dementia narratives have at their centre: a domestic environment, a parent–child role reversal, and a struggle around dignity and selfhood. Yet, here, the domestic environment dissolves as the performance moves from hyperrealism to abstract, non-verbal, and non-representational. Meanwhile, the Sul Concetto takes the metaphor of the “battle” and amplifies it. Though very different in style and tone, Sul Concetto, 27, and Bews’s works each use religion to say something about dementia. Bews’s pieces use religion as a jumping off point, alongside other diverse philosophies. Vere (Faith) and 27 broach the perceived science–religion dichotomy, and the latter includes a number of religiously devoted characters who each offer a slightly different view. Each meditate on ideas of what religious discourse may offer in the face of dementia. By contrast, Sul Concetto deploys a religious discourse to deliberately problematise dementia by way of the failed deus ex machina. The denial of catharsis does avoid the erasure of the character with dementia that has occurred in other performances, but Sul Concetto forgoes any character

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development in pursuit of a postdramatic aesthetic. Where in Memory Point(s) this helped to facilitate a different interaction with dementia stories for audiences, here, the character with dementia is not given any sense of character to speak of. We know nothing about him except that he has dementia and bowel incontinence. The performances that have led each chapter of this book mostly include moments of joy for both the characters with dementia and their care partners. Otherwise, they are gentler in their storytelling, like Autobiographer and Memory Point(s). Perhaps only The Father comes close to Sul Concetto in leaning into the fear associated with the condition. Interestingly, both are about an older man with dementia and his adult child, and both see the domestic space recede. The father’s own point of view is not given any space in Sul Concetto. Neither his present experience of reality, nor his past experiences, staged as reminiscence, are given any weight in the performance. Ultimately, the show does offer a radical staging of the subject matter, but not one that counters stigma around dementia; instead, it represents the extreme end of what Gibson (2020) calls the “right kind” of dementia story. Notes 1 The other two broad models of disability are the medical model and the social model. The medical model locates the disability within the person and prioritises cures, treatments, and preventions for disability. The social model of disability considers the person as having an impairment but locates disability in social structures, that is, the person is disabled by society as opposed to their own body or brain. See Retief and Letšosa (2018) and Oliver (2013). 2 Imago Dei, or Image of God, means in likeness, or similarity, to God. Kevern (2010) revises this idea in his article, “What sort of a God is to be found in dementia? A survey of theological responses and an agenda for their development.” 3 Taylor’s website ( https://www.nickytaylor.uk/) reports: “She is a pioneer in accessible theatre, working with Leeds Playhouse since 2005. She devised and produced the UK’s first Relaxed Performance for young people with learning disabilities in 2009, the model of which has been adopted as industry standard. In 2014 she conceived and produced the world’s first dementia-friendly theatre performance, authoring an accompanying best-practice guide to staging dementia-friendly productions.” 4 See https://www.youtube.com/watch?v=6cYiygcCq1s for a video that gives a sense of the Breaking Bread installation and its themes. See https://www.youtube.com/watch?v=JMz7tVe8FQ8 for a video demonstrating the aspects of The Language My Mother Speaks and how audiences move through it. See https://umsu.unimelb.edu.au/pageassets/express-yourself/gallery/archive/6bMain-The-Language-My-Mother-Speaks-May-2021.pdf for a gallery flyer containing some images of Elements (iteration 2). 5 The synopsis of Williams’s book reads in part: “When we tell stories, we speak a world into being just as God did in the creation accounts in the book of Genesis. Spoken into Being is both a guide to telling our own stories and a reminder that we have been spoken into being as part of a much larger story. It is a voyage of discovery for those of us who wish to deepen our experience of God’s presence in our lives.”

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6 Bews’s recorded conference presentation is available to watch here: https://vimeo. com/559064808. 7 In John Doyle’s Vere (Faith) ( 2013) in particular, a science–spirituality dichotomy rises to the surface, where the two are positioned in opposition to one another. 8 My analysis of the work is primarily based on descriptions provided in critic reviews and video clips of the performance; images also served as prompts for discussion. In combination, these sources sufficiently outline the imagistic structure of the work. While the work is in Italian, the relationship between the characters can be interpreted without a detailed translation; the language is secondary to the visual, auditory, and olfactory experience of the performance. 9 The plays in Chapter 4, Sundowner and 1 Beach Road, transform the domestic space, but never diminish it completely. Blunt and Dowling observe that “domestic relations are critically gendered, whether through relations of caring and domestic labour, affective relations of belonging, or establishing connections between the individual, household and society” ( 2006, 15). Fathers are traditionally positioned to be the family’s representative outside the home ( Connell 2009, 3). The corollary is that motherhood is contextualised as a domestic role, and thus mothers are culturally connected to the domestic space. Considering that women are culturally tied to the domestic space, I wonder if there is something about Sul Concetto centring on two men that allows the move from the domestic space. 10 As a reference for this scene, see the video available at https://www.youtube.com/ watch?v=JzldOzVho6w. 11 In the Bible, Psalm 23 begins: “The Lord is my shepherd; I shall not want.” 12 See Semenowicz (2016, 84) for a reading of the work against the biblical Book of Job.

References Barker, Jeremy M. 2011. “Far-right activists try to shut down theater production in Paris.” Culture Bot, 27 October. https://www.culturebot.org/2011/10/11539/farright-activists-try-to-shut-down-theater-production-in-paris/ Batch, Morgan. 2024 (forthcoming). “The dementia science play: Balancing science with humanity in dementia-themed performance.” In Routledge companion to performance and science, edited by Paul Johnson, Simon Parry and Adele Senior. Routledge. Batch, Morgan and Mark David Ryan. 2023 (submitted). “Exploiting gerontophobia and the monstrous feminine: The representation of dementia in contemporary horror movies.” New Review of Film and Television Studies, 14 September. Bews, Samantha. 2021. “Breaking bread: A dementia awareness café – A theatre installation for dementia awareness.” Journal of Religion, Spirituality & Aging 33 (2): 182–193. doi: 10.1080/15528030.2020.1845280 Bews, Samantha, Rebekah Pryor, Ebony Muller, Louisa Bufardeci, and Linda Judge. 2021. “Artist pages.” In Care ethics and art, edited by Jacqueline Millner and Gretchen Coombs, 227–240. Routledge. Billington, Michael. 2011. “On the Concept of the Face, Regarding the Son of God – review.” The Guardian, 22 April. https://www.theguardian.com/stage/2011/apr/22/ concept-of-the-face-review Blunt, Alison and Robyn Dowling. 2006. Home. Routledge.

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Bons-Storm, Maria. 2016. “Where is God when dementia sneaks into our house? Practical theology and the partners of dementia patients.” HTS Teologiese Studies/ Theological Studies 72 (4): 1–8. doi: 10.4102/hts.v72i4.3227 Brantley, Ben. 2013. “Dust to dust, with humiliation just before the end.” New York Times, 15 February. http://www.nytimes.com/2013/02/16/theater/reviews/on-theconcept-of-the-face-at-montclair-state.html?_r=0 Connell, Raewyn. 2009. Gender: In world perspective, 2nd ed. Polity Press. Cooley, Dennis. 2007. “A Kantian moral duty for the soon-to-be demented to commit suicide.” The American Journal of Bioethics 7 (6): 37–44. doi: 10.1080/15265160701347478 Crawford Sullivan, Susan and Renée L. Beard. 2014 “Faith and forgetfulness: The role of spiritual identity in preservation of self with Alzheimer’s.” Journal of Religion, Spirituality & Aging, 26 (1): 65–91. doi: 10.1080/15528030.2013.811462 Downs, Murna, Neil Small, and Katherine Froggatt. 2006. “Person-centred care for people with severe dementia.” In Severe dementia, edited by Alistair Burns and Bengt Winblad, 193–204. John Wiley & Sons. Eve, Martin Paul. 2011. “Romeo Castellucci/Socìetas Raffaello Sanzio’s ‘On the Concept of the Face, Regarding the Son of God’.” Martin Paul Eve, 24 April. https:// eve.gd/2011/04/24/romeo-castellucci-societas-raffaello-sanzios-on-the-concept-ofthe-face-regarding-the-son-of-god/ Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Guendouzi, Jacqueline and Nicole Müller. 2006. Approaches to discourse in dementia. Lawrence Erlbaum Associates Hall, Mel and Pat Sikes. 2017. “‘It would be easier if she’d died’: Young people with parents with dementia articulating inadmissible stories.” Qualitative Health Research 27 (8): 1203–1214. doi: 10.1177/1049732317697079 Hatton, Nicky. 2021. Performance and dementia: A cultural response to care. Palgrave Macmillan. Hudson, Rosalie. 2004. “Ageing and the trinity: Holey, wholly, holy?” Ageing, spirituality and well-being, edited by Albert Jewell, 86–100. Jessica Kingsley Publishers. Innes, Anthea. 2009. Dementia studies: A social science perspective. Sage. Katsuno, Towako. 2003. “Personal spirituality of persons with early-stage dementia: Is it related to perceived quality of life?” Dementia 2 (3): 315–335. Kevern, Peter. 2010. “What sort of a God is to be found in dementia? A survey of theological responses and an agenda for their development.” Theology 113 (873): 174–182. doi: 10.1177/0040571X1011300303 Koenig, Harold, Dana King, and Verna Benner Carson. 2012. Handbook of religion and health, 2nd ed. Oxford University Press. Kontos, Pia C. 2005. “Embodied selfhood in Alzheimer’s disease: Rethinking personcentred care.” Dementia 4 (4): 553–570. Kuepfer, Jane. 2021. “2. Samantha Bews: Advanced dementia and consciousness: A theatre installation.” Vimeo, 4 June. https://vimeo.com/559064808 Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby . Routledge. Mackelprang, Romel W. and Richard O. Salsgiver. 1996. “People with disabilities and social work: Historical and contemporary issues.” Social Work 41 (1): 7–14.

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McFadden, Susan H., Mandy Ingram, and Carla Baldauf. 2001. “Actions, feelings, and values: Foundations of meaning and personhood in dementia.” Journal of Religious Gerontology 11 (3–4): 67–86. doi: 10.1300/J078v11n03_07 Morgan, Abi. 2011. 27. Oberon Books. Nicholson, Helen. 2011. “Making home work: Theatre-making with older adults in residential care.” NJ: Drama Australia National Journal 35 (1): 47–62. doi: 10. 1080/14452294.2011.11649541 Oliver, Mike. 2013. “The social model of disability: Thirty years On.” Disability & Society 28 (7): 1024–1026. doi: 10.1080/09687599.2013.818773 Pargament, Kenneth. 1997. The psychology of religion and coping: Theory, research, and practice. The Guilford Press. Possell, Linn. 2019. “Worship adaptations.” In Dementia-friendly worship: A multifaith handbook for chaplains, clergy, and faith communities, edited by Kathy Fogg Berry, Robin Dill, Steven M. Glazer, Richard L. Morgan, and William B Randolph, 31–33. Jessica Kingsley Publishers. Rathier, Lucille A., Jennifer Duncan Davis, George D. Papandonatos, Christine Grover, and Geoffrey Tremont. 2015. “Religious coping in caregivers of family members with dementia.” Journal of Applied Gerontology 34 (8): 977–1000. doi: 10.1177/0733464813510602 RealTime Arts. 2011. “Magazine-issue 105-in the loop-Nov 8-RealTime Arts.” RealTime Arts, 8 November. http://www.realtimearts.net/article/issue105/10484 Retief, Marno and Rantoa Letšosa. 2018. “Models of disability: A brief overview.” HTS Teologiese Studies/Theological Studies 74 (1): 1–8. doi: 10.4102/hts.v74i1.4738 Rokem, Freddie. 2017. “Theatrical immanence: The deus ex machina after the death of God.” Performance Philosophy 3 (3): 781–793. doi: 10.21476/PP.2017.33142 Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Semenowicz, Dorota. 2016. The theatre of Romeo Castellucci and Socìetas Raffaello Sanzio: From icon to iconoclasm, from word to image, from symbol to allegory. Palgrave Macmillan. Snowdon, David A. 2001. Aging with grace: What the nun study teaches us about leading longer, healthier, and more meaningful lives. Bantam Books. Spill Festival. 2011. “On the Concept of the Face, Regarding the Son of God, Socìetas Raffaello Sanzio.” Vimeo, 22 April. https://vimeo.com/22739969 Taylor, Nicky. 2016. West Yorkshire Playhouse guide to dementia friendly performances. Leeds: West Yorkshire Playhouse. https://baringfoundation.org.uk/wp-content/uploads/2016/ 05/DementiaFriendly-Performances-Guide.pdf Taylor, Nicky. 2019. “The origin of dementia friendly theatre performances and the role of people living with dementia as creative consultants.” Research in Drama Education 24 (1): 90–95. doi: 10.1080/13569783.2018.1548273 Watts Belser, Julia. 2015. “Violence, disability, and the politics of healing: The inaugural Nancy Eiesland endowment lecture.” Journal of Disability and Religion 19 (3): 177–197. doi: 10.1080/23312521.2015.1061470 Wijesiri, Narayana Don Nimal Wijesiri. 2022. “Representation of identity in Sinhala Theatre: The impact of the religious/charity model.” PhD thesis, Queensland University of Technology. https://eprints.qut.edu.au/235387/ Wilder, Courtney. 2012. “On Christ and healing: Eiesland, Tillich, and disability theology.” Dialog: A Journal of Theology 51 (3): 202–211.

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Williams, Michael E. 2017. Spoken into being: Divine encounters through story. Upper Room. Zeilig, Hannah. 2014. “Gaps and spaces: Representations of dementia in contemporary British poetry.” Dementia 13(2): 160–175. doi: 10.1177/1471301212456276 Zeilig, Hannah. 2015. “What do we mean when we talk about dementia? Exploring cultural representations of “dementia”.” Working with Older People 19(1): 12–20. doi: 10.1108/WWOP-10-2014-0032

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) 27 (2011) by Abi Morgan (England) Autobiographer (2011) by Melanie Wilson (England) Breaking bread: a dementia awareness café (2018) by Samantha Bews (Australia) Elements (iteration 2) (2021) by Samantha Bews (Australia) Ganesh Versus the Third Reich (2011) by Back to Back (Australia) Memory Point(s) (2012) by Platform 4 (England) Sul Concetto di Volto nel Figlio di Dio (2010) by Socìetas Raffaello Sanzio (Italy) Sundowner (2011) by KAGE (Australia) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) The Language My Mother Speaks (2019) by Samantha Bews (Australia) Vere (Faith) (2013) by John Doyle (Australia)

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Dementia and Creative Agency RUFF

In 1984, Joseph Chaikin woke up from an open-heart surgery that had caused a stroke. It would be six months before he could say anything more than the word “yes.” Even when he regained some speech faculty, it took collaboration and accessibility measures to facilitate his cognitive changes in the rehearsal room and onstage. Struck Dumb (1988), written with Jean-Claude van Itallie, was devised so that “pieces and scrolls of written text appear suddenly to the character within sight of the audience on different parts of the stage” (van Itallie 1993, 113). These measures enabled Chaikin to continue performing and made his aphasia a per­ formative aspect. Chaikin was a key figure of experimental theatre in New York throughout the 1960s and 1970s, which included his work with the Living Theater and his founding of the Open Theater. Following the stroke, Chaikin continued to work for almost two decades. Chaikin’s story parallels Peggy Shaw’s in several ways. Shaw had a stroke in 2011, and now lives with memory loss and a form of dementia. Shaw is writer and performer of Split Britches’ RUFF (2012),1 and fellow Split Britches founder Lois Weaver is credited as co-writer and director, though Weaver plays an in­ teresting role in the performance itself. The performance is a part monologue, part vaudeville, one-woman show (of sorts: it features video projections of a band and involves Weaver in its metatheatricality). Despite the usual expectations of people with dementia, Shaw continues to perform and, in RUFF, performs her dementia, in what Lehmann (2006) may refer to as irruptions of the real. Like Chaikin, before her stroke Shaw had an established experimental theatre career, network, and audience. That both their work has sat outside the mainstream is, I believe, critical to their success following their respective strokes. Both Struck Dumb and RUFF reveal the guiding written text to their audiences, an adaptation at home in experimental theatricality. Shaw’s script is displayed on an autocue, a digital upgrade of Chaikin’s system. In RUFF, the three monitors in full view expose the memory loss, making the work both a performance about and of Shaw’s dementia. Shaw’s career and the creative responses to her stroke are subjects of a noteworthy extratextual demarcation, that is, reviews and scholarly analyses that observe differences between pre- and post-stroke Shaw. The DOI: 10.4324/9781003282037-14

Dementia and Creative Agency 183 preceding discussions in this book have highlighted demarcating discourse and imagery in the performances themselves, but RUFF is especially interesting for demarcation both in and about the performance. In an interview with Lauren Mayberry (2013), Shaw describes RUFF as “a new show about filling the empty spaces left in my demented brain after my stroke.” The title refers to the “three-stroke ruff,” a basic drum beat for beginners, suggesting an arduous starting-over, but also a new beginning. Shaw conducts the show through direct address, a style that accommodates her sharing of personal experiences. The performance does not so much “break the fourth wall” as it never establishes one. Thus, a power dynamic is established from the beginning that does not simply position the audience as witnesses to Shaw’s decline, where she herself may be made an object onstage; it instead precludes such an imbalance. The ease with which Shaw approaches and addresses the audience communicates her extensive experience and enduring comfort on the stage. The exposure of her aids, the three monitors, also demonstrates comfort, particularly as she wheels them around the stage and adjusts their height to suit her purposes. She manoeuvres them, showing that she controls them and not the other way around. To complement these mobile screens, a wide sheet of green screen creates the back wall and rolls down onto the stage, anchoring Shaw to the projections that feature throughout the performance (Figure 8.1). Conjuring co-stars and filling the “empty spaces” Benjamin Gillespie describes RUFF as an “intermingling of popular genres with stories, songs, videos, and various other texts that are loosely connected through thematic riffs on the alienating experience of having a stroke” (2013, 577). His description indicates not only the mixture of genres and non-linearly structured sequences but also the stroke as the governing theme. The vaudeville format complements the lack of a linear, “well-made” narrative. Eva Yaa Asantewaa (2013) considers the structure of RUFF as racing “by in a stream of consciousness and digressions.” Solga reflects that the work is constructed out of “awkward shifts” (2014, 136). However, these shifts are not entirely incongruous; the pieces are connected, if tangentially. (The potential awkwardness, though, could be attributed to Shaw’s turning to the monitors for prompts, or consulting Weaver—sitting in the audience—as to whether she is standing in the right place onstage.) Another reviewer calls the work a “virtual tour of Peggy’s post stroke brain” (tooleyh 2013). On this tour, the performance traverses anecdotes, songs, jokes, and pop culture references. Some anecdotes are easily associated with the subject of the show, such as when Shaw recalls her mother claiming that black pepper could cause brain damage, something she once assumed was a myth but now considers more earnestly in light of her stroke. Other shared experiences have a seemingly intangible connection, for example, the time Shaw attempted to cook a turkey for Thanksgiving while on acid. It is as if, following her stroke,

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Figure 8.1 RUFF. Performer Peggy Shaw is wearing black trousers, shirt, and jacket. Her shoes are white and black brogues. She has short greying hair. She is holding a microphone in a stand. Her right hand is held out in front of her in a fist. The performance space features a green screen behind Shaw, which rolls down onto floor, under her feet. On the right side of the photo, Shaw’s backup band is seen projected onto the green screen on the back wall. On the left side of the photo, Shaw’s teleprompter is visible; it features white text (indecipherable in this image) on a black screen. Photo credit: Alexei Taylor. Image taken at the Hemispheric Institute.

Shaw sees every life event as leading up to, potentially contributing to, the event. The featured songs also demonstrate both manifest and tenuous correlations to dementia. The numbers in the show include Jacques Brel’s Jacky, Shirley Ellis’s The Name Game, If I Only Had a Brain from The Wizard of Oz, and Leonard Cohen’s I’m Your Man, on which she is accompanied by her backing band. Although the projected footage of the band is pre-recorded, Shaw interacts with the musicians as though they are live with her onstage. She introduces them oneby-one and they each play a riff on their respective instrument. The band comprises significant collaborators from Shaw’s previous performances. Their appearance in the work—particularly in projected video form—casts them as living apparitions of Shaw’s life and career. Their digital manifestation makes them a part of Shaw’s mind, members of a group of conjured characters that I refer to as “internal others.” One reviewer, familiar with the actor’s work, stated that they “missed seeing Shaw interact with live musicians,” but concedes that “there’s something compelling about the ghostly, disembodied, filmed appearance of the band in RUFF that nicely

Dementia and Creative Agency 185 underlines Shaw’s themes” (The Feminist Spectator 2014). Alternatively, Matthew Delbridge2 and Lee McGowan suggest that “Shaw’s performance preserves the ‘liveness’ of the band” (2015, 8). In addition to the songs and anecdotes, Shaw’s vaudeville features other characters that are channelled either in her own characterisation or mediated through the green screen. In a BBC Radio 4 interview, Shaw herself explains her channelling of other characters in the work: After my stroke I was able to define that I wasn’t an original person, that I had a combination of a lot of people living inside of me that I wanted to talk about and thank for all their help. Like Leonard Cohen, and Marlon Brando and Elizabeth Taylor, Malcolm X, Otis Redding. (Shaw quoted in Moore 2017, 88) Shaw describes a new perspective following her stroke; she seems to see herself differently. She evokes several of these listed “internal others” live in the per­ formance space. In one instance, she performs a version of Marlon Brando’s “Horror” monologue from Apocalypse Now (1979) while she eats an orange. The monologue makes metatheatrical references to her actions onstage, which highlight the staged construct and undercut any sentimentality in the speech. I’m Marlon Brando. Talking as if I have such incredibly important things to say. […] And slowly peeling and spitting out an orange, really proving how good I am at method acting. And what I’m gonna say is a slow monologue. A monologue about horror. I’m proving that I have learned what horror is. [Bites into orange.] It’s impossible [Spits out a piece of orange] for words to describe to someone who does not know what horror is. [Another bite, another spit.] Horror. Horror has a face. And you must make a friend of horror. Horror and moral terror are your friends. If they are not, they are truly enemies to be feared. [Lights goes down to black.] Truly enemies. (Split Britches 2014) This sequence amuses with its metatheatricality and her parody of Brando’s monologue. Yet, as she speaks about horror, the underlying dementia narrative weakens the potential for outright comedy. In this context, dementia and Shaw’s stroke are constructed as (potential) enemies, and this horror is given “a face,” and, therefore, personified and made an antagonist. This characterisation of dementia resonates with the antagonistic personification of dementia in It’s Dark Outside. RUFF contains other metaphors for the brain, stroke, and dementia, including an aquatic motif. I return to Zeilig’s observation that we reach for “metaphor when attempting to explain difficult concepts” (2015, 15). To illustrate the stroke, Shaw shares: “I was minding my own business, and an icicle of death hit the ocean floor of my brain”3 (quoted in Schatell 2014). The water-based theme is referenced again at the end of the work when Shaw is joined onstage by two inflatable, remote-controlled clownfish, as she “discusses the importance of living

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by a river” (Delbridge and McGowan 2015, 12). One interpretation of this scene is that the “remote-controlled fish float into the space to remind us all that this stroke is not in any way the end of Peggy Shaw’s world” (Solga 2014, 137). Aptly, ending RUFF in this way is not about catharsis—about neither a cure or full recovery (an ending to some illness narratives) nor about death or erasure (an ending for many dementia narratives, as discussed in this book)—because Shaw never establishes a tragedy discourse. Another metaphor is more in keeping with other dementia narratives. Shaw illustrates the relationship between her brain and the stroke as a malfunctioning computer: “After spending forty-five years on the stage with lights in my eyes, trying to figure out what a woman is, let alone a lesbian, my brain finally crashed” (quoted in Gillespie 2013, 577). She explains that “there was just no more room for new thoughts in my brain. It had reached capacity” (quoted in Schatell 2014). That more than one metaphor is presented only reinforces Zeilig’s observation; perhaps Shaw has been searching for a way to express the event. The electronic motif is reinforced visually by the presence of the three monitors that fill in the “empty spaces left in” Shaw’s brain and the green screen at the back of the stage that is referred to as the “green screen of [Shaw’s] mind” (quoted in Schatell 2014). To discuss these “empty spaces,” I return to the notion of narrative identity (or the narrative self)—that identity is an arrangement of our autobiographical memories of life experiences and relationships (Fivush and Haden 2003). Marie Mills’s suggestion that as “memory structures and processes weaken, through the progressive nature of dementia, the narrative dissolves and fades into oblivion” (1998, 175) feels problematic as ever for characters with dementia. Yet here, in relation to a performer with memory loss, the assertion that dementia fractures identity is even more troubling. Importantly, RUFF is not only about the lacunae the stroke has left but also what remains for Shaw to reclaim. Delbridge and McGowan describe the work as “a tribute to those who have kept her company, a lament for the absence of those she’s lost and an examination of the holes left in her mind by the stroke” (2015, 3). Charles Isherwood (2013) similarly recognises that the mercurial structure of Shaw’s performance reflects her inner world: “There are dark spots in her mind now, blanks in her memory, and the leapfrogging in her show reflects the dis­ orienting experience she’s come through.” The green screen smooths out the fragmentary, vaudevillian nature of the work, as it ties together the live sequences and projected material that may otherwise feel incongruous. The green paper begins at the top of the back of the stage and rolls down to the floor, seamlessly (literally) connecting the performance space to the back wall onto which recorded video is projected. So, Shaw becomes drawn into the green screen. In turn, the screen is not a mere object, nor are her memories and other pieces of her brain displayed there separate from the performer live onstage. Delbridge and McGowan consider this technology to represent a “challenge to the language of theatre” because it “alludes to the nature of the reconstructed,

Dementia and Creative Agency 187 recomposited, manipulated and controlled” (2015, 1). It is used only to project pre-recorded material and is not “used for live compositing – it is a signpost” (Delbridge and McGowan 2015, 4). It signals the act of live recall. “The green canvas becomes a place for memories to be reconstructed, for messages to be manipulated and for modes of production to be revealed” (Delbridge and McGowan 2015, 3). Placelessness: Nowhere and everywhere As discussed in preceding chapters, most dementia narratives take place in one of two settings: the family home and care institutions. Of course, the endeavour of this book to examine performances that present dementia in innovative ways has led to dementia narratives beyond these places, not to mention narratives that transcend the typical themes and character relationships that play out there. In dramatic theatre, an actor’s use of the stage space tends to correlate to a spatial relationship to another character, or a set piece, prop, or room. The stage in RUFF is not representative in this way—not a “set” per se, intended to suspend reality for the audience and let us believe that Shaw is in a place she is not. The performance space is just that, a space for the work to play out. Moreover, those set pieces that give the space its features, the green screen and the monitors, constitute their own sites of performance, playing out elements that sit within the show, but also perform independently. On top of all that, Shaw and Weaver’s exchanges about the blocking discard the dramatic construction of space and a character’s typically “organic” movement therein, along with notions of dramatic character and a self-contained story. As in the cases of Autobiographer and Memory Point(s), the placelessness in RUFF is significant. While Memory Point(s) is a more literal tour through col­ lected and collective memory, Shaw’s performance is a “virtual tour of Peggy’s post stroke brain” (tooleyh 2013). As a conduit for mediated content, the green screen can evoke memories and conjure some of Shaw’s “internal others” without explicitly denoting place. While placelessness has the capacity to pro­ blematise dementia in its detachment from other people and familiar contexts, it can relieve the subject with dementia of social expectations, their relationship with which may be tenuous. As an art form, theatre is more successful than most at achieving placelessness, as well as spatial fluidity or abstract settings, such as inside a character’s mind. Postdramatic works such as RUFF that evoke place­ lessness, or an experience of being unmoored from place, can also include ele­ ments for an immersive experience, using physical contact and audience interaction. In this way, the audience may perceive a diegesis that is without fixed place while simultaneously experiencing the physical performance space in a heightened way. Thus is live performance’s unique capacity for inducing the sensation of being simultaneously disconnected and grounded, which is notable in the context of dementia narratives.

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The irrupting real and reconfigured care dynamics RUFF performs dementia on two levels. The work is about Shaw’s stroke and her life since, but the performance is also one of dementia in its metatheatricality and the use of technological aids. Moore (2017) views Shaw’s performance as one of both fragility and resilience, as she accepts assistance to accommodate her cognitive decline in order to continue performing. Gillespie adds that, per­ forming post-stroke, Shaw faces a “double bind […]: not only has she lost her ability to fully recall her own past experiences, but she is also unable to memorize lines” (2013, 576). As such, the recollection of her own memories is a more performative act, as she has had to relearn some of her own experiences, as if adopting the character of herself. The presence of the three monitors onstage, scrolling the text from the script, exhibits Shaw’s difficulty with remembering lines. Yet, despite the monitors’ “custody of the script, Shaw exerts an amount of control over them” (Batch 2020, 72), thus reconfiguring the dynamic of dependency. The three monitors are Shaw’s aids, but she manipulates them, wheeling them around the performance space and adjusting their height as needed. The screens are sometimes turned towards the audience, as if to test her recall; they then become a performative element, not simply a support. Still, Gillespie recognises the vulnerability that the screens evoke, in that they display “Shaw’s fragmented psyche, which could short-circuit at random” (2013, 577), alluding to the metaphor of the brain as a dysfunctional electronic device. He also observes that this “deliberately establish[es] the performance frame of potential failure” (2013, 577). Here is an instance where the review literature seems concerned with, even distracted by, the changes to Shaw’s performance style post-stroke. However, someone new to Shaw’s work may find more power in her relation to the screens. Nevertheless, Shaw reflects a self-awareness of this frame of “potential failure,” reminding the audience how embarrassing it is for an actor to forget their lines. The instances where Shaw’s delivery does not match the scripted screened text also exist in this frame. These moments of forgetfulness present as irruptions of the real. Described by Lehmann (2006) as one of his identified traits in the postdramatic palette, the “irruption of the real” describes the unsettling of the staged illusion. While traditional mimetic drama rarely upsets the boundaries of the diegesis, the postdramatic may wilfully stress diegetic boundaries, thus blurring its relationship with the “real” and putting the audience in a position to question whether an action is staged or real. Spectators, therefore, react to events onstage not just as fiction, but as reality. However, RUFF complicates the idea of irruptions of the real, because the entire show is performed by Shaw as Shaw; it is all real, in a sense. In cases of actors forgetting lines, a long pause in a dramatic monologue may be inferred as an aesthetic pause for effect. In RUFF, a long pause may make the audience uncomfortable, thinking that Shaw has lost her train of thought. Other irruptions also occur within the “frame of potential failure.” Shaw sits when she

Dementia and Creative Agency 189 needs a break from standing, takes drinks of water from a bottle she has given to an audience member to hold, and warns the audience that she may cough a lot during the show, another ordinarily embarrassing onstage occurrence. However, some instances of “failure” are planned performative moments, complicating the idea of what is constructed real and irrupting real. After a discussion with Weaver, Solga reveals: That moment when Shaw pretends to have forgotten to reclaim her shoe, and asks the shoe-holder to come up on stage and place it for her? That moment is a ruse. The part where Shaw forgets her place? Those moments are real, but they are also routine; they don’t signal burden, but normalcy. (2014, 137) Shaw and Weaver have deliberately staged moments that blur the line between the performance and the “real.” So, it is unclear how much of the performance of dementia is an irruption of the real and how much is purely performative. RUFF deliberately leans into some of the expectations of people with dementia and it does establish a kind of care dynamic, but Shaw both initiates and controls it. Weaver’s role in the performance is as both director and prompt. However, instead of remaining side-stage and out of sight, she sits among the audience. Like the monitors, she, too, is exposed. While the monitors assist Shaw with the spoken text, Weaver consults on Shaw’s placement and movement onstage. As Solga describes, “when Shaw could not remember where she was meant to be on the stage at any given moment, she called out and up, ‘Lois, am I supposed to be here now?’ Weaver replied without missing a beat, ‘Yes. You’re fine’” (quoted in Solga 2014, 137). Dynamics of assistance or care are practically routine in dementia narratives, but RUFF includes neither formal care dynamics nor the familial ones that usually accompany a generational discourse. The absence of and lack of focus on children or grandchildren in the show makes RUFF exceptional among dementia performances, even compared to Flora in Autobiographer who is also a woman in isolation onstage. This absence precludes the typical generational discourse, and the lack of a spousal relationship further disrupts the common care narrative. While Shaw is a mother and grandmother, these facets of her identity do not become the subject of the work; that is, a woman’s traditional role as carer and homemaker is not a focal point for tragedy as in many other dementia narratives. The exposure of Weaver and the baring of Shaw’s assistance tools constructs a different kind of care narrative, and one in which Shaw is not a passive recipient of assistance. Members of the audience, too, are engaged in this alternative relationship of support. When Shaw first enters the stage at the beginning of the show, she is carrying an orange, a shoe (she is wearing the other), and a bottle of water. As she sets up, the “frame of potential failure,” speaking about the embarrassment of actors forgetting lines and warning that this will happen during RUFF, she ap­ proaches a member of the audience and asks, “Will you hold my orange please?”

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She approaches a second and third audient to offload her shoe and water in the same manner. The action of addressing specific audience members and passing them objects draws them into the performance and into the assistance discourse. With this act, she has shared her potentially complicated relationality to the objects with the audience members to whom the three objects are foreign and unexpected. Later, when Shaw has forgotten—whether genuinely or performatively—where the objects were, she demonstrates memory loss while making the selected audience members mitigators of the complicated relationship to the objects. (Batch 2020, 72) Her direct address of the audience immediately establishes the intimacy of the performance and lays the foundation for sharing her personal experiences. RUFF makes Shaw’s dementia performative and allows little time or space to mourn her cognitive changes. Isherwood (2013) notes that Shaw’s “delivery maintains its deadpan edge even when she’s lamenting the loss of cherished memories.” Extratextual demarcation Like other performances discussed in this book, RUFF does cite a catalytic event to demarcate Shaw’s pre- and post-stroke self. More than that, though, RUFF is part of a broader narrative of Shaw’s self-performance over decades of work. This narrative—or, at least, select comments made by several reviewers and scholars in their discussions of RUFF—demarcates Shaw (the artist, not just the character). Split Britches’ extensive body of work makes its founders recognisable figures in the US’s avant-garde sector. And, their work has evolved as their identities have. RUFF sits among other age-related works from Shaw and the company: The Menopausal Gentleman (1998), Must: The Inside Story (2007), Lost Lounge (2009), Unexploded Ordnances (UXO) (2016), plus Weaver’s performance as her long-time alter-ego, What Tammy Needs to Know about Getting Old and Having Sex (2008). In a BBC Radio 4 interview, Shaw states that all of her performances are about all the changes I’ve been through, I was a lesbian then a butch lesbian, then a mother then a grandmother then a grandmother to a mixed race grandson, then I had a lesbian old age and then I had a stroke. (Shaw quoted in Moore 2017, 79) Thus, RUFF inevitably falls into a decades-long character arc. Along these lines, Solga calls RUFF “the portrait of a[n … ] artist in transition” (2014, 137). The need for support mechanisms as well as Shaw’s intermittent sitting down and hydrating made some audience members who were familiar with Shaw’s work acutely aware of her cognitive affectations (Solga 2014; Moore 2017).

Dementia and Creative Agency 191 Solga even reports feeling uncomfortable with the show’s sense “of utter pre­ cariousness” (2014, 137), perhaps referring to the “frame of potential failure” noted by Gillespie. Solga explains: she began speaking in a voice that felt immediately wrong to me: it was a quite formal, studied tone, almost as though she was struggling to remember her lines. I became anxious, uncomfortable: what was going on? This wasn’t the virtuoso I remembered; this was the artist Shaw usually pretends to be, the artist just barely in control of the show, even as she readies the next laugh, the next trick, the next cutting tale. I realized then, painfully, that this new Shaw was for real: she was indeed a changed performer, an older, physically weaker woman, and the change was steps from me, on stage, struggling to hang in there. (2014, 136) Moore dialogically demarcates this new post-stroke Shaw from the performer who delivered her previous work: “her reliance on autocue and her occasional interruptions of the show […] make explicit the fragility which the stroke has produced” (2017, 88). Despite both the show and several reviews upholding a demarcating discourse, most analyses concede that Shaw’s charisma and humour remain intact. Following the description of her discomfort, Solga identifies that “something else was going on, too: that she was making the show out of these strange, awkward shifts and changes” (2014, 136). The work’s structure facilitates the incongruous movement from sequence to sequence, and the mixture of anecdotes, songs, and impersonations frees the performance from the expectation of linearity. It is unclear to the audience if the vignettes are Shaw’s recalled past, a reimagined past, or imagination entirely. The stroke as the performance’s through-line facilitates this ambiguity. RUFF plays into a pre-/post-stroke demarcation, describing the stroke in terms of “crashing” and other language of catastrophe. Unlike other perform­ ances that stage dementia of the Alzheimer’s type, or similarly chronic conditions of deterioration, the stroke-related dementia in RUFF involves a single event. As such, this demarcation is more apposite to RUFF. In addition to the use of aquatic and electronic-based metaphors, Shaw describes her stroke with a comical anecdote: I went into the hospital as a woman who gets mistaken as a man, and I guess I came out as a straight white guy, ‘cause half my brain was missing. I couldn’t cry. I couldn’t, uh, I could only do one thing at a time. (Barbican Centre 2016) She narrativises her stroke with her signature wit and, again, destabilises the predominant tragic dementia narrative.

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Shaw muses over potential causes for the stroke, listing arrogance, coffee consumption, smoking, and even potential divine damnation for dressing like a man; additionally, her mother’s advice about black pepper takes on new sig­ nificance. The three main reasons she toys with are as follows: the death of a close friend, Ellen Stewart, and a dream she had that Stewart was trying to take Shaw with her; the many performances over the years looking into stage lights; and coming across the old footage of herself as a teenager, wearing a dress. In Shaw’s words: my sixty-seven-year-old self saw my thirteen-year-old self wearing a green dress [ … and] suddenly I was exhausted from still trying to hold my brain in my head and my head on my neck […]. My old brain met my young brain and that one look shattered my insides all at once. (quoted in Moore 2017, 87) The offending footage is shown twice during the performance, projected on the green screen (Figure 8.2), thus recreating the potential conditions of her stroke, playfully tempting fate. Shaw never explains exactly why this video of her attending her sister’s wedding in a dress would trigger the stroke. Instead, she offers an abstract image of her brain threatening to fall out of her head, at risk of shattering. The efforts to explain the stroke speak to the demarcation between the pre- and post-stroke self and a need to explain this change. This has some parallel with the compulsion to name and explain dementia in Western culture: “Society needs dementia to be medicalised, as if it is classified as a disease it holds out the prospect of a cure for ageing and for death” (Harding and Palfrey 1997, 139, emphasis added). The multiple attempts in RUFF to rationalise the stroke also speaks to this need. Notably, though, Shaw subverts any clinical discourse that otherwise emerge, as they do in numerous dementia performances. RUFF as pathographic performance RUFF can be discussed for its contribution as an autobiographical pathographic work (Brodzinski 2016). Pathography is a personal biography of pathology; it puts the person with the condition back into narrative of disease. While medicine has been criticised for dehumanising approaches and reporting (though some notable change is occurring), pathography reasserts the human being. Pathography can appear in the form of novels, blogs, and visual artwork, to name a few, but in live performance, the pathographic body is experienced more immediately by an audience. Emma Brodzinski notes that pathographic narratives can put patho­ logical events into an order and a consumable form: “rather than a chaotic, frightening and unpredictable experience, within the pathographic text the period of illness can be understood as a coherent episode, with a clear narrative trajectory” (2016, 88). RUFF, however, contradicts this description in two ways. First, Shaw’s experience is not limited to a period of illness; her dementia is

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Figure 8.2 RUFF. Performer Peggy Shaw is wearing black trousers, shirt, and jacket. Her shoes are white and black brogues. She has short greying hair. She stands to the left side of the photo. The performance space features a green screen behind Shaw, which rolls down onto floor, under her feet. A video is projected onto the green screen on the wall. The video features a younger Shaw wearing a dress. The live performing Shaw stands in front of the green screen so that part of the image is projected over her own body, lighting her from the waist up. Photo credit: Alexei Taylor. Image taken at the Hemispheric Institute.

ongoing. Second, RUFF does not follow a linear structure, nor does it attempt to package her experience as an easily consumable story for her audience, though it is entertaining and resistant to the narrative of decline or any kind of tragicised telling. Writing about stories led or told by people with dementia, Bitenc finds that Despite the fact that life stories by people with dementia may be considered ‘broken narratives,’ […] people with dementia continue to use these fragmentary narratives to make identity claims, to critique their care environment, and to make sense of their often confusing world. (2018, 128) RUFF affirms Shaw as an active creator, dissimilar to pathologic descriptions and dissimilar to the positioning to people with dementia as (often passive) care recipients in some applied arts projects. For Shaw, performance is not merely a therapeutic mode. When RUFF does include references to the clinical, these are subverted and satirised.

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Pathographic stories do not necessarily critique the clinical framing of illness, but anecdotes of insensitivity from healthcare workers or doctors and adverse side effects may emerge. Brodzinski (2016, 96) recognises a few such criticisms in RUFF. Shaw tells of a nurse who “shook her awake to ask if she wanted a sleeping tablet,” an anecdote very much in keeping with the show’s comedy. However, she shares a more solemn experience: “after the stroke she felt the comforting presence of her deceased sister Norma living inside her but that the treatment had ‘removed [Norma] perfectly’ and left Shaw feeling empty” (Brodzinski 2016, 96). The subversion of the typical clinical dementia discourse is perhaps best demonstrated in Shaw’s parody of a public service announcement. The segment begins with Shaw’s band behind her, and together they perform a rock-and-roll version of the Hokey Pokey. She then hushes her band—addressing them as though they were live onstage—and introduces her public service announce­ ment. The band remains “onstage” during the announcement and sound effects accent certain moments throughout the announcement. Shaw presents the FAST acronym4 and encourages the audience to test themselves as she goes along. She explains that the acronym stands for face, arms, speech, and time, and has the audience smile, hold out their arms, and say, “I was born on a pirate ship” while holding their tongues (which results in “I was born on a pile of shit”) (Split Britches 2014). Shaw’s humour and the rock-and-roll style parody the announcement and subvert the serious subject matter. The interactive FAST number engages Shaw’s audience, and her projected band is treated as though they were live. After another run of the song, substi­ tuting face, arm, speech, and time for the Hokey Pokey’s usual hands and feet, Shaw calls for a time out. The band comically collapses “onstage” and one member has a drink. They remain in sight a little longer, emphasising their presence in the work, despite being absent from the physical stage. Their collapse echoes Shaw’s own need to intermittently rest and casts them as follow re­ presentatives of “ageing femininity” (Moore 2017, 90). Shaw’s “character arc” as an artist, documented by her performances over decades, is a continuous subversion of (conventional binary) femininity onstage. Many consider Shaw’s—and Weaver’s—appearance onstage, as both female and queer, to be inherently radical. In this context, RUFF is an evolution of Shaw’s perspective, now that of an “old woman,” but one who “counters the figure popularly staged as dependent, obsolete or obscene” (Moore 2017, 90). As ad­ dressed in Chapter 4, “queer persons are generally underrepresented in discussions of ageing” (McFarland and Taylor 2021, 53). In 1 Beach Road (discussed in Chapter 4), the intersection of queerness and dementia is not broached in any depth. Performing post-stroke is a natural progression of Shaw’s intersectional feminist work and her radical status. As Bridie Moore describes, Shaw’s “multifaceted, nonlinear, postdramatic performances have the potential, especially when taken together, to offer new ways of understanding and discussing the phenomenon

Dementia and Creative Agency 195 of ageing femininity” (2017, 90). As such, RUFF is a challenge to the prevailing narrative of dementia as a condition that diminishes or erases those it affects. The immediacy of the subject with dementia performing themselves—not an imitation—distinguishes RUFF from the vast majority of performances about dementia. On presence, Brodzinski observes that “[t]he physical presence of the performer’s once/still sick body is the vehicle of communication and serves to substantiate the narrative” (2016, 88). While characters with dementia are typ­ ically channelled by others, Shaw presents herself and conjures up others in her cabaret. Brodzinski notes that RUFF and other autobiographical pathographic shows “serve to problematize the status of the patient and provide new per­ spectives on the medical encounter” (2016, 85). RUFF reconstitutes the typical care dynamic and disregards other common traits of dementia narratives: the generational discourse, erasure, and relegation to home settings or places of care. The work stages a juxtaposition of losing control and being in control of the performance. This juxtaposition sits comfortably with another: Shaw is pre­ senting her dementia in real time, staging an irruption of the real, yet, the performance is scripted, and directed, rehearsed, at times pre-recorded, and managed in real time by Weaver, the monitors, and Shaw herself. Considerations for creative agency in dementia Performing with dementia is complicated by the notion of “coming out” as a person living with dementia (Gibson 2020). The stigma around dementia and the resulting social isolation remain for many. “For someone to reveal that they have dementia with its mistakes, forgetfulness and fragmented language, is to hazard losing the standing of a whole person as is commonly understood in the world and in autobiographical performance” (Gibson 2018, 350). Janet Gibson notes the adaptive tools used in To Whom I May Concern® (2013).5 She describes how “TWIMC® transgresses, disrupts, and blurs the boundaries between art, activism, and therapy, and between performance, literary narrative, and public speech” (Gibson 2018, 348). Being real is very important to the TWIMC performers. In “Our side of the fence”, John Sandblom says “we want to be real” […]. But what exactly does this mean? He adds: “not bumbling idiots”! For John, being ‘real’ is equated with being “neurotypical” (a term devised by people on the autism spectrum to refer to people not on it). Though being neurodiverse is celebrated by many activists in this field, presenting as neurotypical is very important for John and likely all the TWIMC cast members when performing, especially when on the Internet. (Gibson 2020, 231) Where Shaw’s adaptive tools are made especially visible, for others, this may feel like it undermines their performance. The TWIMC cast members all

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pre-script their parts and read from a printout (or a Word document when performing over Zoom). With appropriate theatrical adaptations, people with dementia can (continue to) work creatively. Joseph Chaikin adapted not only his theatre style as a performer but also his rehearsal processes as a director. His sister, actor Shami Chaikin, described that the actors had to adapt to Chaikin’s abridged directions. But if you listen to him—he may not always speak in full sentences—you’ll find that the word or phrase he uses will be suggestive. For example, at one point in the rehearsal, he said to me, ‘Shift.’ I knew he meant that I should change what I was doing. […] His particular genius has always been getting an actor freed […]. He has created for himself—and us—a choice language! (S. Chaikin quoted in Horwitz 1998) Many works about dementia—particularly those developed in collaboration with a government or research body—seek to re-narrativise dementia. Yet, as several of the discussions in this book demonstrate, problematic or clichéd representations can eventuate nonetheless. Brodzinski finds value in the bodily presence of live performance as “countering received ideas of objectivity/ subjectivity and passivity in the patient experience” (2016, 85). Likely, the typical dementia narrative can be most effectively reframed by the involvement of people living with dementia in the development and/or staging of a per­ formance. Still, even projects that involve people with dementia have fallen into dehumanising portrayals. D-Generation (Chapter 5) was built on a foun­ dation of stories compiled by older adults living in dementia care during TimeSlips™ sessions (Anne Basting’s method), yet its puppetry and other elements of the dramaturgy reproduced troubling stereotypes about people living with the condition. Even 20 years after Basting’s own production, Time Slips, performances that draw on stories of or by people living with dementia seldom see people with dementia assume creative agency themselves. However, some promising ex­ amples have begun to emerge. In 2018, the UK’s West Yorkshire Playhouse (now Leeds Playhouse) hosted the seven-week Every Third Minute6,7 festival centred on dementia stories. Not only did the program comprise plays about dementia, but the organisers also collaborated with nine curators who were people living with dementia and their supporters. A simple question underpinned the festival: “What stories would we tell about dementia if people living with dementia were making the decisions?” (Leeds Playhouse n.d.). As an example, training programs and workshops shared the program with 11 productions, four of which were new commissions. Where other festivals and venues are still working to adopt dementia-friendly practices to include people with dementia as audiences (see Chapters 6 and 7)—and the Playhouse is recognised for pioneering such efforts—Every Third Minute made space for people with dementia

Dementia and Creative Agency 197 as both audiences and creators. A theatre adaptation of Still Alice (novel by Lisa Genova and film adaptation directed by Richard Glatzer and Wash Westmoreland) was “guided by activist Wendy Mitchell, who lives with young-onset dementia, and a consultant to the director and acting company” (Leeds Playhouse n.d.). Perhaps more importantly, the Playhouse programmed original work alongside existing texts. This Is Us incorporated drama, poetry, puppetry, and music to showcase original work by people living with dementia. The triple bill “Three” presented three “stories of life and flights of the imagination by rarely heard voices, co-written by people living with dementia and professional writers” (West Yorkshire Playhouse 2017, 6). “Three” included I See Land Ahead by Bob Fulcher and Dominic Gately, Hamari Yaadain/Our Memories by Ming Ho and members of the Hamari Yaadain, Memory Café, and A Horse Called Freedom by Rosa Peterson and Barney Bardsley. After interviewing festival director Nicky Taylor, Hatton recognises that the performances that featured were a departure from the loss-based narratives that have characterised many plays about dementia. As Taylor explains, it was about ‘choos[ing] those stories that aren’t currently being told and express[ing] dementia in a more balanced way’. (Taylor quoted in Hatton 2021, 52) Following the festival, “Three” toured around Leeds to care homes and community venues. Every Third Minute may not have boasted its own Peggy Shaw, a creative leader with dementia—its showcases were based on a facilitated devising processes—but it does represent a strong stride in the right direction. The very existence of this festival is noteworthy, not to mention that the projects it bore included people whose condition would previously have excluded them. And Shaw’s ex­ ceptionalism should also be noted. Not all people with dementia are in a position, whether professional or cognitive, to produce as she has done. Every person’s dementia is individual in its symptomology and progression. The difference between their measures and Shaw’s does not actually matter; the key is that the performer has negotiated how they will present their personal experience. Notes 1 See videos at https://hemisphericinstitute.org/en/enc14-performances/item/2347enc14-performances-shaw-ruff.html and https://www.foundationforcontemporaryarts. org/recipients/peggy-shaw/ for excerpts of RUFF. 2 Matt Delbridge was the set and media designer for RUFF. 3 Joseph Chaikin and Jean-Claude van Itallie’s Struck Dumb similarly describes having a stroke as “being figuratively struck by lightning” ( van Itallie 1993, 113). 4 The FAST acronym is used internationally for stroke awareness. It stands for face (facial drooping), arms (arm weakness), speech (difficulty with speech), and time (call emer­ gency services immediately).

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5 More information about To Whom I May Concern is available at https:// towhomimayconcern.org/. 6 After the statistic that, in the UK, someone develops dementia every three minutes. 7 For a more in-depth discussion of West Yorkshire Playhouse’s Every Third Minute festival, see Hatton (2021, 52–59).

References Asantewaa, Eva Yaa. 2013. “”Ruff”: Peggy Shaw rocks Dixon Place.” Infinite Body, January 17, 2013. https://infinitebody.blogspot.com/2013/01/ruff-peggy-shaw-rocksdixon-place.html Barbican Centre. 2016. “An introduction to RUFF - with Peggy Shaw.” YouTube Video, March 23, 2016. https://www.youtube.com/watch?v=6G5MdyJQbmk Basting, Anne. 2006. “Arts in dementia care: ‘This is not the end … it’s the end of this chapter’.” Generations 30 (1): 16–20. Batch, Morgan. 2020. “Dementia in dramaturgically hybrid performance and the per­ formance of objects.” Performance Research 25 (4): 65–73. doi: 10.1080/13528165.2020.1 842033 Bitenc, Rebecca A. 2018. “‘No narrative, no self’? Reconsidering dementia coun­ ter‑narratives in Tell Mrs Mill Her Husband Is Still Dead.” Subjectivity 11 (2): 128–143. doi: 10.1057/s41286-018-0049-y Brodzinski, Emma. 2016. “The patient performer: Embodied pathography in contem­ porary productions.” In Performance and the medical body, edited by Alex Mermikides and Gianna Bouchard, 85–98. Bloomsbury Methuen Drama. Delbridge, Matthew and Lee McGowan. 2015. “Green: Exploring the aestheticized use of chroma-key techniques and technologies in two intermedial productions.” Body, Space and Technology, 14. http://people.brunel.ac.uk/bst/vol14/ Fivush, Robyn and Catherine A. Haden (Eds). 2003. Autobiographical memory and the construction of a narrative self: Developmental and cultural perspectives. Lawrence Erlbaum Associates, Inc. Gibson, Janet Louise. 2018. “‘Talking back, talking out, talking otherwise’: Dementia, access and autobiographical performance.” Research in Drama Education: The Journal of Applied Theatre and Performance 23 (3): 340–354. doi: 10.1080/13569783.2018.1474094 Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Gillespie, Benjamin. 2013. “Ruff by Peggy Shaw and Lois Weaver (review).” Theatre Journal 65 (4): 576–577. doi: 10.1353/tj.2013.0101 Harding, Nancy and Colin Palfrey. 1997. The social construction of dementia: Confused pro­ fessionals? Jessica Kingsley Publishers. Hatton, Nicky. 2021. Performance and dementia: A cultural response to care. Palgrave Macmillan. Horwitz, Simi. 1998. “Face to face: Joseph Chaikin directs Arthur Miller: ‘Making ordinary moments extraordinary’.” Back Stage 39 (3): 5. Isherwood, Charles. 2013. “A deadpan look at life before and after stroke.” New York Times, 13 January. https://www.nytimes.com/2013/01/14/theater/reviews/ruffpeggy-shaws-new-solo-show-at-performance-space-122.html

Dementia and Creative Agency 199 Leeds Playhouse. n.d. “Theatre & dementia.” Accessed November 13, 2020. https:// leedsplayhouse.org.uk/creative-engagement/older-people/theatre-dementia/ Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge. Mayberry, Lauren. 2013. “Interview: Peggy Shaw – Queer theatre icon discusses her new show RUFF.” The List, 22 March. https://www.list.co.uk/article/49770-interviewpeggy-shaw-queer-theatre-icon-discusses-her-new-show-ruff/ McFarland, Jami and Allison Taylor. 2021. “‘Femme ain’t frail’: (Re)considering femi­ ninity, aging, and gender theory.” Journal of Lesbian Studies 25 (1): 53–70. doi: 10.1 080/10894160.2020.1722925 Mills, Marie A. 1998. Narrative identity and dementia: A study of autobiographical memories and emotions. Ashgate. Moore, Bridie. 2017. “The age performances of Peggy Shaw: Intersection, interoception and interruption.” In Ageing women in literature and visual culture: Reflections, refractions, reimaginings, edited by Cathy McGlynn, Margaret O’Neill, and Michaela Schrage-Früh, 73–92. Palgrave Macmillan. Schatell, Robin. 2014. “Peggy Shaw in the “Ruff” at LaMaMa.” The Lo-Down, 20 January. http://www.thelodownny.com/leslog/2014/01/peggy-shaw-is-ruff-at-lamama.html Solga, Kim. 2014. “What feminists do when things get ruff.” Performance Research 19 (2): 135–137. doi: 10.1080/13528165.2014.928529 Split Britches. 2014. “Ruff.” Vimeo Video, February 26, 2014. https://vimeo.com/ 87678948 Split Britches. 2015. “Ruff.” Accessed January 12, 2018. www.split-britches.com/ruff The Feminist Spectator. 2014. “Peggy Shaw in Ruff.” The Feminist Spectator, January 22. http://feministspectator.princeton.edu/2014/01/22/peggy-shaw-in-ruff/ tooleyh. 2013. “Peggy Shaw’s Ruff. Chelsea Theatre, World’s End London April 2013.” Drama Queens Review, 10 April. https://dramaqueensreview.com/2013/04/10/peggyshaws-ruff-chelsea-theatre-worlds-end-london-april-2013/ van Itallie, Jean-Claude. 1993. “Speaking from the heart.” Performing Arts Journal 15 (2): 110–114. West Yorkshire Playhouse. 2017. Every Third Minute brochure. https://www.wyp.org.uk/ wp-content/uploads/2018/02/ETM-Brochure-final-digital.pdf Zeilig, Hannah. 2015. “What do we mean when we talk about dementia? Exploring cultural representations of “dementia”.” Working with Older People 19 (1): 12–20. doi: 10. 1108/WWOP-10-2014-0032

Cited performances 1 Beach Road (2011) by RedCape Theatre (England) A Horse Called Freedom (2017) by Rosa Peterson and Barney Bardsley (England) Autobiographer (2011) by Melanie Wilson (England) D-Generation: An Exaltation of Larks (2013) by Sandglass Theater (US) Hamari Yaadain/Our Memories (2017) by Hamari Yaadain, Memory Café and Ming Ho (England) I See Land Ahead (2017) by Bob Fulcher and Dominic Gately (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia)

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Lost Lounge (2009) by Split Britches (US) Memory Point(s) (2012) by Platform 4 (England) Must: The Inside Story (2007) by Peggy Shaw (Split Britches) (US) RUFF (2012) by Peggy Shaw and Lois Weaver (Split Britches) (US) Still Alice (2013) by Christine Mary Dunford after Lisa Genova (US) Struck Dumb (1988) by Joseph Chaikin and Jean-Claude van Itallie (US) The Menopausal Gentleman (1998) by Peggy Shaw (Split Britches) (US) This is Us (2018) by Leeds Playhouse (formerly West Yorkshire Playhouse) (England) Time Slips (2000) by Anne Basting (US) To Whom I May Concern® (2013) designed by Maureen Matthews (US) Unexploded Ordnances (UXO) (2016) by Split Britches (US) What Tammy Needs to Know about Getting Old and Having Sex (2008) by Lois Weaver (US)

Part 3 Summary

The performances discussed in Parts 1 and 2 play a little with the postdramatic palette. Part 1 discussed some performances that are driven by spoken language; Autobiographer, The Father, and Really Old, Like Forty Five especially would be impossible to follow without dialogue. The works featured in Part 2 represent what you could call hybrid works. To borrow from Gibson, “Sundowner though dressed in postdramatic clothes, is at its core a dramatic tragedy” (2020, 137). This is also true of 1 Beach Road. With the exception of It’s Dark Outside, in Part 2 physical theatre and dance and puppetry are accompanied by the spoken word. The final part of the book turns to work further down the postdramatic spectrum in terms of deconstructing ideas of linearity, place, and character. Memory Point(s) and Sul Concetto di Volto nel Figlio di Dio could be experienced without the spoken word and an audient could still garner meaning. Language is a key cognitive area affected by various dementias. Some linguistic changes are the result of memory loss, for example, struggling to grasp a word. As dementia advances, however, it may also cause difficulty in listening and comprehending. RUFF, too, carries some meaning visually. Also, importantly, Shaw’s use of the teleprompters is commentary on linguistic difficulty and memory loss. Therefore, the postdramatic—with its demotion of the spoken word as primary signifier—offers more possible avenues of storytelling and is perhaps a more adaptable form for creators who live with cognitive decline or other neurodiversity. Writing about his theory of postdramatic theatre, Hans-Thies Lehmann argues that “rather than bemoan the lack of an already defined image of the human being in postdramatically organized texts, it is necessary to explore the new possibilities of thinking and representing the individual human subject sketched in these texts” (2006, 18). His thoughts echo a posthumanist ideology. Rosi Braidotti explains Humanism in her book The Posthuman (2013). She observes that “The idea of the ‘Human’ implied in the Humanities […] has historically been the image of Man as a rational animal endowed with language” (2013, 1). Braidotti also reflects that this model “implies the dialectics of self and other, and posits the binary logic of identity and otherness” (2013, 2). If, as Humanism denotes, “subjectivity is equated with consciousness, universal rationality, and self-regulating ethical behaviour” DOI: 10.4324/9781003282037-15

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(Braidotti 2013, 2), then people with dementia, who are often considered to lack rational thought and self-regulation, are excluded from the definition of subject. Posthumanism offers “alternative views about the human and the new formations of subjectivity [… that] do not merely oppose Humanism but create other visions of the self” (Braidotti 2013, 4). In this study, dementia is considered not simply as a loss of selfhood—as it may be in relation to Humanism—but as an experience that remains on the spectrum of humanness. The Humanist ideal is significant to representations of dementia, considering the stereotypical image of the person with dementia as burdensome, lost, and without selfhood. The focus on works that deviate in some way from dramatic tradition is intended to uncover potential possibilities for (re)presenting dementia that exist outside of stereotyped constructions. This is not to say that postdramatic performance inherently produces untroubled dementia narratives. Sul Concetto shows how the form can be used to deliberately problematise (tragicise) the condition. I argue that theatre has a unique capacity to be both a visual medium and one in which place may be irrelevant or may be warped or weakened. There is no true equivalent to an empty stage in, for example, cinema. Each performance discussed in Part 3 stage placelessness in some way. Sul Concetto explodes the domestic space for an iconographic display. Here, placelessness facilitates the expression of dementia as catastrophe. And, in a play like The Father, placelessness represents one’s loss of their grasp on place and reality. Yet, placelessness can be used to relieve characters with dementia from temporal and spatial expectations. In RUFF, place is irrelevant and the set is under Shaw’s control. In Memory Point(s), the collected memories/items are unmoored from their respective time and place, and yet beautified by being archived. Postdramatic works are more likely to exploit a performance space for participatory, immersive, and multisensory dramaturgies. The postdramatic’s emphasis on the live body (of performers, of audients) foregrounds expressions of embodied selfhood, further developing the significance of embodiment discussed in Part 2. The live performer in co-presence with the audience, sharing time and space, creates a deeper connection to (auto)pathography. This may be why emerging theatre practice created with or by people with dementia tends to make use of these more innovative forms. References Braidotti, Rosi. 2013. The posthuman. Polity Press. Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge.

Conclusion Dementia, the Theatre Ontology, and Opportunities

The particularity of theatre (for representing dementia) Traditionally, dramatic theatre has worked to create an “effect of the real” (Danan 2014, 4) for which the visual, physical, and auditory elements are intended to work in tandem to constitute the likeness of a world, a fictive cosmos. The postdramatic demands of its audience a higher suspension of disbelief. Instead of an “effect of the real” (mimesis), it attempts a “real effect” (Danan 2014, 4), disregarding imitation for a shared experience of someone’s story. Live performance creates an environment in which these meanings and stories are shared with audiences in real time and space. Embodiment is heightened. An audience not only experiences the bodies of performers more immediately but also their fellow audience members around them. If, as Shabahangi suggests, people with dementia are present in their own way even if they may not share in our consensus of reality, then these alternate experiences are important components of the stories we tell about dementia. I find that selfhood is most well-preserved in characters with dementia when their own experience of reality is afforded witness. Multiple forms used in concert can create imaginative storyworlds, balance linguistic deficit with physicality, embody memories or evoke nostalgia, abstractly represent subjects and their relationships to one another, but also potentially dehumanise subjects with dementia by rendering them “Other.” Spoken language can be a vehicle for demarcation that is usually wielded by those without dementia. The linguistic difficulty associated with dementia can amplify this power imbalance. It is important to consider the implications of this inherent power for positioning characters with dementia when others refer to their absence. Performances that weaken the authority of language have the capacity to more fairly represent people with dementia. The immediacy and shared time and space that distinguish live performance make the human body an important site of meaning. It is a signifier that is most often unmediated. The presence of the performer is felt by the audience, an engagement that may have the capacity to weaken themes of erasure and absence

DOI: 10.4324/9781003282037-16

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attributed to people with dementia. Additionally, the body in performance is a medium that may extricate itself from mimetic representation by way of movement in lieu of language, dance theatre, physical theatre, and movement that alludes to metaphorical themes. Live storytelling also has at its disposal touch, smell, and taste. Physical performance modes can embody memories, dehierarchise language, and represent relationships in abstract ways. Giving credence to recollections and individual experiences of reality live onstage in close proximity to the audience shows the person with dementia not as an anachronism, disconnected from the present, but as experiencing something that is alternate perhaps to a consensus of reality but at parallel, nonetheless. The demotion of mimesis also makes way for performances that lack discernible place and time. Conclusions Following the surge in stage portrayals of dementia in the mid-2000s, the early 2010s saw a range of performances produced that demonstrate the vast potential of dementia representations in live theatre. I suspect this growth is due, at least in part, to the confluence of concerns over the ageing population, increasing awareness about dementia, and drama-based projects in the applied arts and research dissemination steadily growing in number. Rebecca Bitenc writes that “Since the 1980s a growing body of research on dementia [… has aimed] to reconstitute the humanity and dignity of people with dementia and challenges the notion that selfhood is simply ‘lost’” (2020, 11). Just as any subject represented in any storytelling medium, dementia’s presentation on the stage has the capacity to influence understandings of the condition. But how to best wield this power? Considering the period of development, I have shown some of the breadth of how the condition has been represented in live performance. The case studies in this book follow portrayals in film, television, and literature, in that they tend to decentralise the biomedical narrative of dementia in favour of person-centred stories. Selfhood has high currency in discussions of dementia, whether related to the loss of the self, maintenance of selfhood, or related discourses around agency and dignity. Thus, the first two parts of the book became about interior experiences of dementia and embodiment, following ideas from Nader Robert Shabahangi, Steven R. Sabat (2001), and Pia Kontos (2003, 2004, 2005). Where a (mimetic) consensus of reality is strictly adhered to onstage, the diegesis does not allow for alternate perceptions of this reality, as may be experienced by those with advancing dementia. This may be disrupted by alternate experiences of reality staged using layered theatre technologies. If, as Shabahangi (quoted in Nicholson 2011) suggests, people with dementia are present in their own way—though they may not share in a consensus of reality—then these alternate experiences are important components of the stories we tell about dementia.

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Shabahangi’s observation that people with dementia may exhibit “behaviours [that] are typically non-linear” correlates with Anne Basting’s (2003) view that the “Once upon a time …” pattern of storytelling that requires a “happily ever after” and a linear progression does not facilitate all stories and storytelling and is especially non-conducive to dementia narratives. Across storytelling media, the two main settings of dementia narratives are the family home and institutional care. Home settings may give rise to themes relating to caregiving, the generational discourse, parent–child role reversal, and sensations of belonging/estrangement and the un/familiar. Professional care settings similarly facilitate care dynamics and the un/familiar but can lack the presence of family. Either way, the tendency towards these sites demonstrates the insulated nature of dementia narratives. Several performances discussed in this book demonstrate a departure from not only these sites but also, in some cases, place altogether. Contrary to the aforementioned settings, placelessness can relieve the subject with dementia of social expectations, their relationship with which may be tenuous. Instead, the work can focus on the relationship between the character with dementia and the audience. As an art form, theatre is more successful than most at achieving placelessness, as well as spatial fluidity or abstract settings, such as inside a character’s mind. Time may be treated in the same way. Other narrative forms can certainly warp time in the same ways that theatre can, but live performance is uniquely capable of evoking a timelessness or an irrelevance of “when” or “how long.” The structure of this book has traced practices from more traditionally dramatic or dialogue-driven works, to physical, dance, and puppetry theatre, to the decidedly postdramatic. “Rather than bemoan the lack of an already defined image of the human being in postdramatically organized texts, it is necessary to explore the new possibilities of thinking and representing the individual human subject sketched in these texts” (Lehmann 2006, 18). Constructions of the self can be reconfigured in postdramatic works that put more emphasis on embodiment and non-prescribed meaning in line with what Lehmann says of the postdramatic. Social research on dementia, which seeks to problematise mind–body dualism and embrace notions of embodiment, validates this approach to dementia narratives. Therefore, the above chapters investigate case study performances that are representative of the possibilities of live performance for representing dementia experiences. As I have shown, some issues in the representation of dementia do remain, even where the creators have sought to challenge prevailing ideas about people with dementia. First, people with dementia are demarcated from those without, sometimes with problematic connotations. I do not refer here to the fact that a character with dementia is known to the audience. Problems arise where characters with dementia are described or visualised as existing in a state of lesser existence. Secondly, endings may contain images of erasure. The performance analyses have shown that the endings of dementia narratives can reveal the insoluble nature of

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the condition. Some works end with the fate of the person with dementia left ambiguous, while others are more affirmative. In particular, the endeavour for a neat resolution can risk erasing the person with dementia by shifting the focus to the family narrative. Some works make allusions to a failed deus ex machina and very few address death directly. In performances about dementia, death is most often only insinuated. When it occurs, death is often signalled with visual metaphors. Zeilig’s (2015) explanation that metaphors are typically used for concepts that are difficult to explain in literal terms is pertinent. Dementia’s inexplicability and the taboo associated with both the condition and death itself amalgamate to produce an altogether difficult narrative subject to resolve or even represent without calling on metaphor or euphemism. Some works attempt a resolution by having their subject with dementia leave the stage as though fading or being erased. The action of fading away dehumanises the later stages of dementia by showing it as a process of death, as opposed to a stage of later life. Additionally, the smooth transition to death or erasure suggests that this is a second death. Staging this erasure validates descriptions of dementia as a “social death” (Kontos 2004) or “living death” (Sweeting and Gilhooly 1997; Innes 2009; Behuniak 2011). There remains a tendency towards endings that seek to afford catharsis, which can fall into the tragic framing that Gibson (2020) has also critiqued. The “ideal” of the happily ever after is difficult to apply to dementia narratives (Basting 2003, 25). By its very nature, dementia—typified by chronic and irreversible deterioration—resists a resolved conclusion. Yet, the impulse to resolve the experience is evident in many stories about dementia. This attempt at resolution may be seen alongside a generational discourse, which can refocus the story from the experience of the person with dementia to the experience of their family. Steven H. Zarit and Joseph E. Gaugler (2006) note that feelings of relief can be attached to the death of a family member with dementia. They describe this as “the end of a long journey for the family” (Zarit and Gaugler 2006, 191) and something for which the family is prepared. As such, the only way the obstacle of dementia can be “overcome” is for death to occur. That is, to facilitate dramatic catharsis, the experiences of those around the person with dementia are sometimes presented as the final image of the work. The resulting erasure of the character with dementia makes for an ending that is problematic for the representation of people with dementia. It suggests that to live well with dementia is impossible. The broader implication of this idea could theoretically lead to dismissive thinking towards quality dementia care and consideration for the agency and dignity of people with dementia. This leads me to the third representational issue that persists in some works: the tragic framing of stories as per the “right kind” of dementia story (Gibson 2020). Gibson’s theory of the “right kind” of narrative puts many dementia narratives into sharp focus. She writes about the frustration she feels when people claim that only tragic stories do justice to experiences of dementia. As an

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example, Mel Hall and Pat Sikes (2017) have reflected on the friction between notions of living well with dementia and the negative experiences of the condition that many people undergo. While these more difficult stories are valid, I maintain that the public is very aware of many of these negative experiences and what we need more of are the stories that are not just about dementia, the condition, but about people living with dementia and their retained, if transformed, selfhood. It is worth noting the parallels to the media and arts representation of disability more generally; familial, especially parental, stories are often foregrounded. More than this, the immense importance of theatre created by people living with dementia (and disability) cannot be understated. Recent developments In the years since the productions discussed in this book, performances, applied drama programs, inclusion initiatives, and research studies have continued to emerge. I outline a few examples of each below, to give a sense of recent developments in these areas. Dementia-friendly showings are available at increasingly more venues, including prominent theatres such as London’s National Theatre. These showings make attendees comfortable by allowing them to leave and return to the theatre throughout the show, watch the show from a screen in the foyer, enjoy a recap of the first act before the second begins, and approach members of staff who have received “Dementia Friends” training. Sometimes the inclusive performance is about dementia, for example, dementiafriendly showings of Finding Joy and Still Alice, which goes some way to close the gap between arts about people with dementia and for people with dementia. Leeds Playhouse (formerly West Yorkshire Playhouse) continues to offer dementiafriendly showings. Additionally, following the Every Third Minute festival in 2018, the Playhouse toured the triple bill of plays co-written by people with dementia, “Three,” to Leeds care homes and community venues. Vamos Theatre, which produced the mask performance Finding Joy, has pursued several other projects related to dementia and accessibility (Arts Council England 2019). With support from the Arts Council’s National Lottery, they take some of their mimed mask performances into care homes in a program called Sharing Joy. They also provide training on person-centred care and on improving accessibility for people with dementia in communities and organisations. Journalist Priti Salian (2020) outlines several initiatives for arts inclusion in Germany, including small-group museum tours for people with dementia (in at least 12 museums throughout Germany), multisensory performances by the theatre company Demenzionen, and therapy clowns to reduce “behavioural symptoms” in care home residents. There are more examples than ever of arts inclusion for people with dementia, not merely intervention, though the line between the two often seems thin. As seen by the above list, Salian’s article conflates arts inclusion for art’s sake with arts-based interventions. Importantly,

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while drama-based therapies or “interventions” still have a place in dementia care (Zeilig, West, and van der Byl Williams 2018), there has been a shift towards engaging people with dementia in creativity, designing activities in which they are more active than passive. As an example of the shift, see Ayelet Dassa and Dovrat Harel’s (2019) writing about people with dementia as spect-actors (a portmanteau of spectator and actor, referring to an audience role that is not entirely passive) in musical theatre. Yet, even in this example, the authors emphasise drama and music as therapy. Clowning, therapy clowns, and relational clowning have come to be associated with performance-based therapy in dementia care settings. Kontos et al. have researched the use of therapy clowns and their results “suggest that elderclowning reduced moderate to severe BPSD of nursing home residents with dementia” (2016, 347). To remind the reader, BPSD stands for behavioural and psychological symptoms of dementia and is a contested concept (see Part 1 summary). In another study, Julie Dunn, Michael Balfour, and Wendy Moyle (2019) analyse Playful Engagement, a program involving two relational clowns working with individuals with dementia. They sought to answer whether relational clowning could improve quality of life. Their twofold analysis finds that, first, quality of life did seem improve for people with dementia and, second, if quality of life did not improve overall, the program did at least facilitate “quality moments of life.” Applied arts with puppetry has also taken up a strong position in similar studies. Mnemonic Theatre Project, an initiative of care services provider Wartburg (US), is program that Wartburg (2015) describes as “improvisational therapy with puppets,” though the program did involve a performance for family and friends. This work differs from the plays discussed in Chapter 5, in that the people with dementia are the puppeteers, not the puppets. Similarly, in 2016, three UK artists undertook work in a dementia care home, guiding the residents in creating a puppet film based on their pasts and on moments shared with fellow residents (HU17 Admin 2016). Again, this program engages the participants as creatives, though it relies on memory to create the stories, which could unnecessarily limit those with memory loss. Thirdly, the Tunbridge Wells Puppetry Festival, working with Age UK Tunbridge Wells, organised a program in 2018 where they gathered stories of people with dementia. The project sought to use puppetry to tell these stories and culminated 25-minute video (Age UK 2018). Improvisational drama has also found a place in the sector. Stomping Ground Comedy Theatre (US) runs improvisation workshops for care partners looking to develop skills to communicate better with their loved one with dementia. The company also runs workshops for people with dementia themselves. Another program, the Memory Ensemble™ (US), uses improvisational theatre with people with Alzheimer’s disease and other dementias. The program seeks to encourage engage participants in a low-stress workshop that does not require them to remember past events (Dunford, Yoshizaki-Gibbons, and Morhardt 2017).

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John Zeisel et al. (2018) discuss semi-improvised performances as a nonpharmacological intervention for people with dementia. What the above examples demonstrate is that at least some association between arts engagement for people with dementia and therapeutic outcomes or behavioural interventions endures. Dementia and creative arts have been on a journey through passive arts therapy (where people with dementia watch or listen but are not invited/encouraged to participate) and more recently artistic participation for wellbeing. Along the way, engagement with creative arts by people with dementia have been hindered by existing theories on creativity, which have emphasised its cognitive functions (Camic et al. 2018) and by the professionalisation of the arts, which has led to thinking that artistic creativity is exclusive to professional artists and, therefore, outside the capabilities for people with dementia (Basting 2006). Family members and care staff may not be able to see creative potential co-existing with dementia (Basting 2006). (See Camic et al. (2018) for a thorough review of creativity in dementia.) Shari Sabeti’s (2015) research into the perceived dissonance between creativity (future-oriented) and older people (past-oriented) reveals that the overwhelming proportion of projects for older people are focused on retrospection as a creative activity. (For an analysis of applied drama practices, see Gibson’s (2020) chapter “Mapping applied performance in dementia cultures.”) The limitations placed on people with dementia are line with what activist Kate Swaffer calls Prescribed Disengagement®. Swaffer coined the term in 2009 to describe recommendations from health professionals to disconnect from her life: “give up work, give up study, and to go home and live for the time I had left” (Swaffer 2015, 3). Certainly, there are very few opportunities for people with dementia to engage in any kind of public storytelling. This reflects our “cultural reticence” to hear the voices of those who may struggle with communication (Beard 2016, 225). The current limitations that continue to inform much of theatre’s engagement with those living with dementia echo the limited representations of older characters, actors, and creators generally (Barnes Lipscomb 2012). I return now to the subject central to this book: performances about dementia. Following the period in focus in the book, Fuchs observed in 2017 that dementia had become the disease du jour on and off Broadway in New York. She listed Jordan Harrison’s Marjorie Prime, Colman Domingo’s Dot, Florian Zeller’s The Father, and Stephen Karam’s The Humans (Fuchs 2017a, 2017b). All four plays have since been adapted for either film or television. Since then, performance makers have continued to produce dementia-themed work. The Bibliography of Works constitutes what I am sure is a non-exhaustive list of dementia-themed work, alphabetised, since the 20th century up until 2022. Here, I draw attention to several specific productions to give a sense of how the artform has continued to develop. Forget Me Not (2022) by Garrett Davis (US) highlights the African American family experience of dementia, a crucial perspective. The play arose out of what is described as an “academic–community partnership” (UC Davis Health 2022).

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A recording of the performance was screened and accompanied by “a panel discussion with UC Davis Health experts, family caregivers, research participants and community leaders.” Playwright Davis recognises that African Americans are an at-risk group, yet “less likely to get help.” UC Davis Health’s Healthy Aging Initiative seeks to champion “culturally appropriate healthy aging,” recognising that experiences vary across families of different backgrounds, and this requires attention and action. Dust on the Shortbread (2018) by Anything is Valid Dance Theatre (Australia) is a dance/physical theatre work performed in a suburban house to small audiences of 15 people. The two veteran performers, Elizabeth Cameron Dalman OAM and George Shevtsov, both older adults, move around the audience. It is still somewhat unusual to see a cast of exclusively older people, even in theatre about dementia. As far as its dramaturgy, Jo Pollitt’s (2018) review alludes to disruptions to a consensus of reality: the complexity of dementia is foregrounded through weaving disparate stories, the responsive liveness of the performers, the intimacy of familial dynamic and the dense layering of sound. At times, recorded voices take over from the live, creating a sense of worlds within worlds to accentuate the interior monologue in a sensorial soundscape by Tristan Parr. These overlapping worlds conjure concepts of memory and forgetting, the ease and still surprise of long time love, and the curious absorption of time over years and even seconds. Several co-productions, sometimes international, have recently emerged. Between Worlds: Outsourcing Dementia Care (2019) is a co-production between Costa Compagnie, the University of British Columbia, Newcastle University, Ballhaus Ost (with roots in Germany, Switzerland, North America, UK, and Northern Thailand). The work is an immersive, multi-media experience based on interviews (Johnston and Pratt 2021). Theatre of Wandering(2021) is a co-production by Entelechy Arts, OiBokkeShi, and Belgrade Theatre Coventry, Belgrade Arts Gym. It was produced as a public promenade work through Coventry, England. The project has produced multiple outcomes: the live performance itself, a film of the work, an “audio wandering tour,” and a podcast (Entelechy Arts 2021). Lastly, in Chapter 8, I touched on some recent and emerging theatre projects that more closely involve people with dementia in staging their experiences. Still, theatre made for, with, and, most crucially, by people living with dementia does not feature prominently in this book. Gibson (2020) has written more comprehensively about these practices in her book. Recently, Michèle Saint-Yves created Clock for No Time (2021, Australia). The play is informed by Saint-Yves’s own experience as someone with an acquired brain injury and someone whose father died with Alzheimer’s disease. Saint-Yves has made the performances accessible, and the list of accessibility measures is the most extensive I have seen, including live captioning and sign language, audio description, wheelchair access,

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relaxed performance arrangements, extensive signage, stim toys, and a quiet space (Play & Go Adelaide 2021). While Saint-Yves does not require all these measures, as someone with lived experience of disability, she is more aware than non-disabled creators of the measures required for more comprehensive inclusion. Clock for No Time is, therefore, a performance about dementia, led by a disabled person, and accessible for audiences with dementia. I hope to see more performances that are more than merely about dementia. Where to from here? I have discussed gender in parts of this book, but disability, race, ethnicity, class, and sexuality are not as applicable in the chosen case studies. The discussed performances are overwhelmingly Caucasian in their representation, featuring non-disabled, middle class, cisgendered, and mostly heterosexual characters. My approach has also been limited to work from predominantly English-speaking countries. More research is needed that examines work outside this scope, especially for how dementia is narrativised across cultures and how these representations reflect or challenge the prevailing rhetoric around dementia outside Australia, the US, and UK. Intersectionality would be a strong underpinning for future research that would seek to document the period following the noted initial surge in stage representations (the latter part of the 2010s and beyond). The literature is lacking extensive examination of dementia in performance from disabled researchers. In general, research into how people experience dementia alongside existing disabilities is an area ripe for discussion. Recently, Alys Young, Emma Ferguson-Coleman, and John Keady (2020) published a conceptual thematic literature review to lay foundations to explore the experiences of Deaf people with dementia. The parallels between disability theatre aesthetics and dementia in theatre are under-discussed. The absence of perspectives from people living with dementia itself is certainly a significant gap in the academic literature. Additionally, the extant research, performance practice, and activism led by people with dementia have also lacked some diversity. In the activism space, there appear to be narrow “criteria” for those whose who find a public platform: well-educated, cisgendered, heterosexual, and white (Gibson 2020, 262). Plus, “most of these advocates are not over sixty-five years of age and frail so issues to do with ageism are not to the fore” (Gibson 2020, 262). In research, first-person perspectives from people with dementia tend to be limited to those in the earlier stages of dementia. Research ethics has likely played a part in this; obtaining informed consent from someone experiencing linguistic difficulty is challenging. See Heather Wilkinson’s edited collection The Perspectives of People with Dementia: Research Methods and Motivations (2002) for extensive discussions on methods, data collection, consent, and ethics. Certainly, the world is becoming more educated about dementia, though primarily in terms of care requirements, the importance of diagnosis, the carer battle,

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the strain on public resources, and the need to develop more efficient systems and practices. Where education is lagging is around the creative capacity of people living with dementia and stories outside the narrative of decline (Gullette 2004) and the “right kind” of dementia story (Gibson 2020). The projects created with people with dementia have broken some ground. Since the boom in popularity, creative practice by people with dementia has continued to develop, even if largely outside the mainstream. People with dementia are beginning to take up more creative roles, that is, transcending their roles as mere subjects, spectators, recipients (of arts-based care), or consultants, though the latter is a significant steppingstone. In the meantime, what the extant voices and stories do offer, if not diversity as a group, are possibilities for (re)thinking, (re)imagining, (re)experiencing, and, ultimately, (re)humanising people with dementia. References Age UK. 2018. “Puppetry and dementia support.” Age UK. Accessed November 13, 2022. https://www.ageuk.org.uk/information-advice/health-wellbeing/conditions-illnesses/ dementia/puppetry-and-dementia-support/ Arts Council England. 2019. “Five ways Vamos Theatre is changing lives.” Arts Council England. Accessed November 13, 2022. https://www.artscouncil.org.uk/news/fiveways-vamos-theatre-changing-lives Basting, Anne Davis. 2003. “Reading the story being the story: Context and content in stories by people with dementia.” Generations 27 (3): 25–29. Basting, Anne Davis. 2006. “Arts in dementia care: ‘This is not the end … it’s the end of this chapter.’” Generations 30 (1): 16–20. Beard, Renée L. 2016. Living with Alzheimer’s managing memory loss, identity, and illness. New York University Press. Behuniak, Susan M. 2011. “The living dead? The construction of people with Alzheimer’s disease as zombies.” Ageing & Society 31 (1): 70–92. doi: 10.1017/S0144 686X10000693 Bitenc, Rebecca A. 2020. Reconsidering dementia narratives: Empathy, identity and care. Routledge. Camic, Paul M., Sebastian J. Crutch, Charlie Murphy, Nicholas C. Firth, Emma Harding, Charles R. Harrison, Susannah Howard, Sarah Strohmaier, Janneke Van Leeuwen, Julian West, Gill Windle, Selina Wray, and Hannah Zeilig. 2018. “Conceptualising and understanding artistic creativity in the dementias: Interdisciplinary approaches to research and practise.” Frontiers in Psychology 9 (1842): 1–12. doi: 10.3389/fpsyg.2018.01842 Danan, Joseph. 2014. “Dramaturgy in ‘postdramatic’ times.” In New dramaturgy: International perspectives on theory and practice, translated by Ada Denise Bautista, Andrea Pelegri Kristić, and Carole-Anne Upton, edited by Katalin Trencsényi and Bernadette Cochrane, 3–17. Bloomsbury Methuen Drama. Dassa, Ayelet and Dovrat Harel. 2019. “People with dementia as ‘spect-actors’ in a musical theatre group with performing arts students from the community.” The Arts in Psychotherapy 65: article number 101592. doi: 10.1016/j.aip.2019.101592

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Dunford, Christine Mary, Hailee M. Yoshizaki-Gibbons, and Darby Morhardt. 2017. “The Memory Ensemble: Improvising connections among performance, disability, and ageing.” Research in Drama Education: The Journal of Applied Theatre and Performance 22 (3): 420–426. doi: 10.1080/13569783.2017.1326806 Dunn, Julie, Michael Balfour, and Wendy Moyle. 2019. “Quality of life or ‘quality moments of life’: Considering the impact of relational clowning for people living with dementia.” Research in Drama Education: The Journal of Applied Theatre and Performance 24 (1): 38–52. doi: 10.1080/13569783.2018.1544889 Entelechy Arts. 2021. “Theatre of wandering.” Entelechy Arts. Accessed November 13, 2022. https://entelechyarts.org/tow/ Fuchs, Elinor. 2017a. “Dementia: The theater season’s “in” disease part 1.” The Theatre Times, 16 January. https://thetheatretimes.com/dementia-theater-seasons-disease-part-1/ Fuchs, Elinor. 2017b. “Last spring, dementia made it to Broadway! Part 2.” The Theatre Times, 4 February. https://thetheatretimes.com/last-spring-dementia-made-broadway/ Gibson, Janet Louise. 2020. Dementia, narrative and performance: Staging reality, reimagining identities. Palgrave Macmillan. Gullette, Margaret Morganroth. 2004. Aged by culture. University of Chicago Press. Hall, Mel and Pat Sikes. 2017. “‘It would be easier if she’d died’: Young people with parents with dementia articulating inadmissible stories.” Qualitative Health Research 27 (8): 1203–1214. doi: 10.1177/1049732317697079 HU17 Admin. 2016. “People living with dementia create puppet film for festival.” HU17.net, 6 July. https://www.hu17.net/2016/07/06/people-living-with-dementiacreate-puppet-film-for-festival/ Innes, Anthea. 2009. Dementia studies: A social science perspective. Sage. Johnston, Caleb and Geraldine Pratt. 2021. “Travelling intimacies, translation and betrayal in a creative geography.” Cultural Geographies 28 (2): 417–428. doi: 10.1177/1474474021993416 Kontos, Pia C. 2003. “‘The painterly hand’: Embodied consciousness and Alzheimer’s disease.” Journal of Aging Studies 17: 151–170. doi: 10.1016/S0890-4065(03)00006-9 Kontos, Pia C. 2004. “Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease.” Ageing & Society 24: 829–849. doi: 10.1017/S0144686X04002375 Kontos, Pia C. 2005. “Embodied selfhood in Alzheimer’s disease: Rethinking personcentred care.” Dementia 4 (4): 553–570. Kontos, Pia, Karen-Lee Miller, Romeo Colobong, Luis I. Palma Lazgare, Malcolm Binns, Lee-Fay Low, Claire Surr, and Gary Naglie. 2016. “Elder-clowning in long-term dementia care: Results of a pilot study.” Journal of the American Geriatrics Society 64 (2): 347–353. doi: 10.1111/jgs.13941 Lehmann, Hans-Thies. 2006. Postdramatic theatre. Translated by Karen Jürs-Munby. Routledge. Lipscomb, Valerie Barnes. 2012. ““The play’s the thing”: Theatre as a scholarly meeting ground in age studies.” International Journal of Ageing and Later Life 7 (2): 117–141. Nicholson, Helen. 2011. “Making home work: Theatre-making with older adults in residential care.” NJ: Drama Australia National Journal 35 (1): 47–62. doi: 10. 1080/14452294.2011.11649541 Play & Go Adelaide. 2021. “Clock for No Time | Accessible play | Bowden | 19–31 Oct 2021.” Play & Go Adelaide, 26 September. https://playandgo.com.au/clock-for-notime-accessible-play-bowden-19-31-oct-2021/

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Pollitt, Jo. 2018. “A tender dance.” Seesaw, 17 September. https://www.seesawmag.com. au/2018/09/a-tender-dance Sabat, Steven R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Blackwell Publishing. Sabeti, Shari. 2015. “Creative ageing? Selfhood, temporality and the older adult learner.” International Journal of Lifelong Education 34 (2): 211–229. doi: 10.1080/02601370.2014.987710 Salian, Priti. 2020. “Art, theatre and clowns: Creative cures for dementia.” The National, 9 January. https://www.thenationalnews.com/lifestyle/wellbeing/art-theatre-and-clownscreative-cures-for-dementia-1.960772 Swaffer, Kate. 2015. “Dementia and prescribed disengagement®.” Dementia 14 (1): 3–6. Sweeting, Helen and Mary Gilhooly. 1997. “Dementia and the phenomenon of social death.” Sociology of Health & Illness 19 (1):93–117. doi: 10.1111/1467-9566.ep10934317 UC Davis Health. 2022. “Stage play screening highlights challenges, resources for dementia care.” UC Davis Health. Accessed November 13, 2022. https://health. ucdavis.edu/news/headlines/stage-play-screening-highlights-challenges-resources-fordementia-care/2022/05 Wartburg. 2015. “Wartburg’s puppetry program helps Alzheimer’s & dementia patients.” Wartburg. Accessed November 13, 2022. https://wartburg.org/wartburgs-puppetryprogram-helps-alzheimers-dementia-patients/ Wilkinson, Heather (Ed.). 2002. The perspectives of people with dementia: Research methods and motivations. Jessica Kingsley Publishers. Young, Alys, Emma Ferguson-Coleman, and John Keady. 2020. “How might the cultural significance of storytelling in Deaf communities influence the development of a lifestory work intervention for Deaf people with dementia? A conceptual thematic review.” Ageing & Society 40 (2): 262–281. doi: 10.1017/S0144686X18000946 Zarit, Steven H. and Joseph E. Gaugler. 2006. “Care by families for late stage dementia.” In Severe dementia, edited by Alistair Burns and Bengt Winblad, 185–192. John Wiley & Sons. Zeilig, Hannah. 2015. “What do we mean when we talk about dementia? Exploring cultural representations of “dementia”.” Working with Older People 19 (1): 12–20. doi: 10. 1108/WWOP-10-2014-0032 Zeilig, Hannah, Julian West, and Millie van der Byl Williams. 2018. “Co-creativity: Possibilities for using the arts with people with a dementia.” Quality in Ageing and Older Adults 19 (2): 135–145. doi: 10.1108/QAOA-02-2018-0008 Zeisel, John, Michael J. Skrajner, Evan B. Zeisel, Miranda Noelle Wilson, and Chris Gage. 2018. “Scripted-IMPROV: Interactive improvisational drama with persons with dementia—Effects on engagement, affect, depression, and quality of life.” American Journal of Alzheimer’s Disease & Other Dementias 33 (4) 232–241. doi: 10.1177/153331 7518755994

Cited performances Between Worlds: Outsourcing Dementia Care (2019) by Costa Compagnie/University of British Columbia/Newcastle University/Ballhaus Ost (Germany/Switzerland/North America/UK/Northern Thailand) Clock for No Time (2021) by Michèle Saint-Yves (Australia)

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Dot (2015) by Colman Domingo (US) Dust on the Shortbread (2018) by Anything Is Valid Dance Theatre (Australia) Finding Joy (2014) by Vamos Theatre Company (England) Forget Me Not (2022) by Garrett Davis (US) Marjorie Prime (2015) by Jordan Harrison (US) Still Alice (2013) by Christine Mary Dunford after Lisa Genova (US) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) The Humans (2014) by Stephen Karam (US) Theatre of Wandering (2021) by Entelechy Arts/OiBokkeShi/Belgrade Theatre Coventry/Belgrade Arts Gym (England)

Glossary

Audient

Audient is used in this book to mean a single audience member. This singular form of “audience” is useful in describing performances that facilitate an especially individual experience for those in the audience. Bodily co-presence Bodily co-presence is the shared time and space between performers and spectators, but also among an audience and among those onstage. Breaking the fourth wall Breaking the fourth wall is a term most familiar to theatre and film scholars that refers to breaching the perceived boundary between the action onstage and the audience. The fourth wall is therefore “broken” when an actor acknowledges the audience directly. Co-presence (in puppetry) I borrow the phrase co-presence from Paul Piris (2014) to describe a phenomenon where puppets perform alongside human actors (puppets in their way of being different to a live actor’s), as opposed to puppetry where the humans onstage do not play a role in the diegesis (puppeteers dressed in all black). Dance theatre Dance theatre uses dance as a key artform to tell a story but contains other storytelling modes that transform the work beyond a strict dance performance. Dance may be the primary storytelling device or one of several dominant storytelling forms in a piece. Dance theatre has roots in 20th-century German Tanztheater. For its use of the body as key signifier, dance theatre is tied to physical theatre. Diegesis (diegetic) Some may also be familiar with the term diegesis from film studies. It refers to the storyworld. It is very useful when discussing theatre as not everything you see onstage is necessarily part of the storyworld—think puppeteers dressed in all black, stagehands moving set pieces, directors prefacing a performance. One may describe the music in a film as being extradiegetical; the music accompanies the scene but may not be heard by the characters in that scene. The term essentially has the same application in theatre. Dramaturgy In this book, dramaturgy refers to the composition of a performance in terms of text, visual elements, spatial relationships, sound,

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and the structure of the performance. I use it to describe the combined use of theatrical forms and tools and their relation to one another. Experiential theatre When I refer to experiential work, I mean performance that engages with different senses, encouraging its audiences to not only look and listen, but to touch, perhaps to open doors, to peer into a small space/installation, perhaps to eat and drink, to get dressed up, perhaps to write something down for a future audient to experience. Both experiential and immersive approaches often coincide with promenade theatre, in that an audience in a promenade work may experience immersion. Hypermediality (hypermedium) Chiel Kattenbelt (2006) calls live theatre a hypermedium to describe its capacity to feature multiple media in the performance space (projected images or video, live actors, puppets, live music, pre-recorded music, etc.) and allow each medium to retain its ontology. For comparison, if you were to film a dance piece that was accompanied by live cellist playing over a pre-recorded track and a projected image in the background, the resulting video would turn everything to recorded video and sound. That is, the distinct textures of the live music over the pre-recorded music, punctuated by the sound of the dancer’s feet on the floor, the view of the live dancer in contrast to a digital projection become blurred, and some elements lost. To view this same performance in its live form, an audience would experience those textures uncorrupted and the dancer and cellist embodied, aware of where one sound ends and the other begins, all the edges and individual textures distinct. Linearity/non-linearity/timelessness Linearity in this book refers to a chronological sequence of events. Non-linearity describes a disruption to chronology in the storytelling. In addition to stories told out of order, some of the performances I discuss in the book evoke a timelessness (often in concert with placelessness), where time is not simply disrupted but practically irrelevant. Liveness Theatre’s liveness is distinct among other audio-visual artforms. It can incorporate the body, the voice, performing objects, and visual dramaturgy; and the “dialogical creation and exchange of meanings” (Bernard et al. 2015, 1141) in shared time and space. Thus, liveness is tied to bodily co-presence. Theatre can be layered and textured in a way that is more immediately perceptible to an audience; and, as I discuss in this book, it may layer alternate experiences of reality. Live theatre affords possibilities for participation and proximity. Mask Mask work in performance is ancient and tied to various cultures (CITE). I write about it briefly in Chapter 5 in a broader discussion about puppetry. Blumenthal describes masks as “first cousins” of puppets; they are equally ancient performance technologies, and ones that give a character a static facial expression.

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Metatheatre/metatheatrical Metatheatre describes drama with elements that draw the audience’s attention to the fact that it is a staged performance. Examples include a character breaking the fourth wall, a narrator who openly acknowledges the audience is watching a staged story, or other self-referential moments in a play. The strongest example in this book is RUFF. Metatheatrical can also describe aspects of the work that exist beyond the diegesis but inform meaning-making nonetheless, for example, the actors’ “doubling” in Inside Out of Mind or the use of young casts in Also a Mirror (2011), Moments (2014), and Memory and Beyond (2018) to evoke a generational discourse. Mimesis/Mimetic theatre Mimesis has roots in the Greek for “imitation.” In narrative, especially screen and stage media, it refers to a realism that seeks to emulate life as naturalistically as possible. A mimetic drama scripts dialogue that feels like real-life conversation and develops characters whose action and development feel believable. Mimesis is tied to the “well-made” play, as both have been dominant styles in mainstream European and Western theatre for decades. Ontology (ontological) I may refer to theatre’s ontology, its way of being, usually in reference to the fact that it is live (at least, much more often pre-pandemic) and that it necessitates bodily co-presence. Physical theatre Physical theatre is performance that disrupts the logocentric hierarchy and positions physicality as a primary storytelling mode. Some physical theatre lacks spoken word altogether. It can include other visual modes like mask and dance. Placelessness Compared to other artforms, live theatre is equipped with an especial capacity to evoke placelessness; for example, cinema cannot achieve placelessness like an empty stage can. Placelessness is significant in several of the works discussed in the book, including those that evoke a retreating sense of place, and I refer to the notion that a performance can be set nowhere and/or everywhere. Postdramatic theatre The postdramatic label arose from a need to theorise new forms of performance that could no longer be described by existing theory. Hans-Thies Lehmann’s seminal Postdramatic Theatre (1999, 2006 English trans.) remains the authoritative source on the theory. Lehmann (2006, 86) identifies his theory as a “palette of stylistic traits.” The prefix “post” refers to a theatre that “operate[s] beyond drama,” not in denial of it (27). Postdramatic theatre is characterised by a destabilisation of traditionally dramatic conventions, which can include non-mimetic presentation; the demotion of language or promotion of other “texts” or codes in the performance, fragmentation, and “the demand for an open and fragmenting perception in place of a unifying and closed perception” (82). Lehmann explains that “[p]ostdramatic theatre thus includes the presence or resumption or continued working of older aesthetics” like

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puppetry and shadow theatre (27). Lehmann also describes how postdramatic theatre has the capacity to “explore the new possibilities of thinking and representing the individual human subject” (18). Promenade and immersive theatre Promenade theatre refers to works—often staged throughout a building and its grounds—through which the audience walks, experiencing different scenes along the way. There are often opportunities to stand or sit and watch; sometimes the audience may interact with members of the ensemble, heightening bodily co-presence, or some parts of a promenade work may not involve performers. Promenade theatre is inherently immersive: the audient is within the work instead of merely sitting outside of it, watching. Therefore, there is no breaking of the fourth wall. Immersive theatre is tied to experiential theatre as it affords greater opportunities for an audience to experience a performance through touch, taste, and/or smell. Puppetry Puppetry is an ancient form with a rich history, predating even theatre (Francis 2012) and assimilating and combining elements from diverse sources throughout history and across cultures. Gross (2011, 39) notes that “the puppet theater is a theater of miniatures. Things on the puppet stage are most often smaller than life, shrunken or reduced doubles of a human world.” Verbatim theatre Verbatim theatre is a type of documentary theatre where responses are gathered through interviews, surveys, or other modes and woven into a script to be delivered word for word. “Well-made” play While the “well-made” play has seen several interpretations over its history (dating back to French playwright Eugène Scribe in the 19th century), the well-made play is commonly understood to include an exposition that introduces the setting, characters, and context; scenes that introduce tension and build suspense; and a climax where the dilemmas of the drama reach a critical point, quickly followed by a resolution.

Plain language chapter summaries

The Introduction tells the reader how some people think about dementia and people with dementia. Some people think dementia means that you have lost yourself and some say this means that people with dementia are not as important as other people anymore. Some people look at older plays from theatre history and say that maybe they are about dementia. But there are many more newer plays from the year 2000 onwards that were written about people with dementia. Because this book is about theatre, the Introduction explains some words and phrases that writers use to talk about the artform of theatre. The Introduction lists the other chapters in book and describes what they are each about. Chapter 1 talks about two plays. They are The Father written by Florian Zeller and Autobiographer written by Melanie Wilson. Both these plays try to give the audience a look into how people with dementia think and feel. The Father does this by mixing up the scenes, so we do not know what day or time it is. It also introduces people who look like strangers but tell the main character, called André, that he should know them. Autobiographer is about a woman called Flora. There are four women that play Flora at different ages. They share the stage at the same time. The play is not set in a specific place or at a specific time. The actors talk to the audience and ask them questions. These things make it very different to a more traditional play like The Father. Chapter 2 is about plays that people write after they have done some research. This research may be talking to people with dementia, talking to the families of people with dementia, or talking to professional carers who care for people with dementia. The play Inside Out of Mind, written by Tanya Myers, is about people working in a nursing home who look after people with dementia. The play has a lot of action and dialogue about their jobs and the stress of looking after people. But the play also shows the audience what some of the characters with dementia are thinking and feeling. This means we understand the characters with dementia better, as well as the people who look after them.

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Chapter 3 talks about plays that tell stories about broader communities and how they think about dementia. The play Really Old, Like Forty Five, written by Tamsin Oglesby, is a dark comedy that imagines if older people had to work as grandparents or move into a scientific research facility to be experimented on. This means that older people, especially if they have dementia, are only valuable when they are giving something to the community. But the play is not completely serious. The play shows us an extreme version of the world if people continue to under-appreciate older people. The chapter also explains that even stories about dementia in society and politics focus on one family. This is because audiences care about stories of individual people and their families more than stories about society and politics. Chapter 4 looks at two plays that are set in the home. They are Sundowner by a theatre company called KAGE and 1 Beach Road by a company called RedCape Theatre. Both these plays have dialogue but also have a lot of physical movement to tell their story. Sundowner uses dance to show what people with dementia may think and feel. 1 Beach Road has a set that does not look like a real house, but the actors act like it is a house, and a cafe, and a doctor’s office. Both these plays show how the family home changes when someone has dementia. The house is a safe space for people with dementia, but people can also start to get confused in their own home. Sometimes, like in Sundowner, there are children who visit and memories that fill the home. Chapter 5 is about puppetry theatre. It talks about two plays called D-Generation: An Exaltation of Larks by Sandglass Theater and It’s Dark Outside by The Last Great Hunt. In D-Generation, the puppets are small like children, and they talk to their puppeteers who play characters as well. The characters played by actors do not have dementia, but the characters played by puppets do have dementia. This could mean that dementia makes people child-like and less alive than people who do not have dementia. It’s Dark Outside uses hand puppetry as well as shadow puppetry, animation, and actors in masks. When the puppet is used to play the man with dementia, the characters around him are puppets and objects, too. And when the man is played by an actor in a mask, the other characters are played by actors, too. This means that the man does not seem less alive, because he is the same type of performer as the other characters. However, there are other things in It’s Dark Outside that can make the person with dementia seem less valuable, like making the ending of the story about his son instead of the main character. Chapter 6 talks about a very unusual piece of theatre, because it does not have just one story and the audience does not sit down to watch the performance. The play Memory Point(s) is by a theatre company called Platform 4. The audience walks around a theatre building with only five other people and, along the way, they listen to stories from people with dementia, they look at photos, they see art

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Plain language chapter summaries

dioramas, they watch dancers and listen to musicians, and they dress up in costumes, drink tea and eat cake. The audience uses all five senses, and they interact more with the stories than they would if they sat down to watch a more traditional play. The performance includes stories from people with dementia and their families, but it is more about memory than it is about dementia. Chapter 7 looks at a play that some audiences were very shocked and upset by. The play is called Sul Concetto di Volto nel Figlio di Dio, which is by a company from Italy called Socìetas Raffaello Sanzio. The play’s English name is On the Concept of the Face, Regarding the Son of God. The play has religion as a theme. It has a large picture of Jesus Christ, and this is what upset some people. The play does not have a lot of dialogue and uses imagery and sound design instead. So, it is not traditional, and it can mean different things to different people. It is not a hopeful or joyful play. It is more about how difficult dementia can be for people. Chapter 8 talks about a play called RUFF written by Peggy Shaw. Peggy also performs the play herself. Peggy had a stroke in 2011 and made the play in 2012, even though she has dementia. Some people think that if you have dementia you cannot be creative and you cannot remember well enough to perform in a play. RUFF shows that people with dementia can do these things. While she acts, Peggy uses screens that show her the script, and her colleague Lois sits in the audience to help remind Peggy where to stand and what to do next. This means that people with dementia can write and perform in plays if they get enough support. This kind of performance that lets people with dementia talk to the audience is becoming more common, which is very good for people with dementia and other disabilities. The Conclusion tells the reader about the main lessons in this book. It talks about how people with dementia are not losing their self and are not less valuable as people. It talks about how some of the plays show us what the characters with dementia are thinking and feeling, which shows us they are real people. The chapter explains how using different artforms in plays, like dance, music, and puppetry, can tell different stories about dementia. Some of these stories are ones that cannot be told as easily in books and movies. The Conclusion also talks about some of the problems in plays about dementia, like how some focus too much on the family and not enough on the person with dementia. The chapter ends by talking about how more people with dementia are telling the world about their thoughts and feelings. But there are still a lot of people who do not get to share how they feel.

Bibliography of works

1 Beach Road (2011) by RedCape Theatre (England) 27 (2011) by Abi Morgan (England) A Box of Memories (2022) by Duncan McKellar and Erin McKellar (Australia) A Horse Called Freedom (2017) by Rosa Peterson and Barney Bardsley (England) A Map to You (2021) by The Dot Collective/King’s College London students (England) ‘A’: The Christmas Party (2008) by Becky Shaw (England) A Wedding Story (2000) by Bryony Lavery (England) Absence (2011) by Peter M. Floyd (US) After the Crash (2011) by Julia Gray (Canada) Also a Mirror (2011) by Sean Riley (Urban Myth Theatre Company) (Australia) Alzheimer’s The Musical: A Night to Remember (2007) by Maureen Sherlock (Australia) Alzheimer’s: The Musical (2015) by Todd Cardin (US) Amy’s View (1997) by David Hare (England) An Evening with Dementia (2009) by Trevor T Smith (England) Ancient Mysteries (2011) by Charlie Higson and Paul Whitehouse after David Clegg (England) André y Dorine (2010) by Kulunka Teatro (Spain) Angela (2021) by Mark Ravenhill (England) Angeleta and Etelvina (2014) by Around the Glove (England) Autobiographer (2011) by Melanie Wilson (England) Bailegangaire (1985) by Tom Murphy (Rep. of Ireland) Bananas in the Bedside Table (2016) by Suzy Dunne (Australia) Before I Leave (2016) by Patrick Jones (Wales) Between Worlds: Outsourcing Dementia Care (2019) by Costa Compagnie/University of British Columbia/Newcastle University/Ballhaus Ost (Germany/Switzerland/North America/United Kingdom/Northern Thailand) Blank Tiles (2016) by Dylan Cole (Australia) Blue Kettle (1997) by Caryl Churchill (England) Breaking bread: a dementia awareness café (2018) by Samantha Bews (Australia) Cathedral (2015) by Fye and Foul (England) Clock for No Time (2021) by Michèle Saint-Yves (Australia) Cockamamy (2016) by Louise Coulthard (England)Coop (2008) by Black Hole Theatre (Australia)

224

Bibliography of works

Coop (2008) by Black Hole Theatre (Australia) Couldn’t Care Less (2013) by Plutot La Vie and Strange Theatre (Scotland) Cracked: New Light on Dementia (2014) by Julia Gray (Collective Disruption) (Canada) Daisy (2011) by Terry Mervin (Australia) Dark Matter (2017) by Vertebra Theatre (England) Death of a Salesman (1949) by Arthur Miller (US) Dementia (2002) by Evelina Fernandez (US) Demented (2022) by Ruth Pieloor (Australia) Dementia, or the Day of My Great Happiness (2013) by Kornél Mundruczó with Proton Theatre (Hungary) D-Generation: An Exaltation of Larks (2013) by Sandglass Theater (US) Do Not Go Gentle … (2006) by Patricia Cornelius (Australia) Don’t Forget To Remember Me (2009) by Haresh Sharma (The Necessary Stage) (Singapore) Don’t Leave Me Now (2014) by Brian Daniels (England) Dot (2015) by Colman Domingo (US) Dottie (2005) by Robin Marcotte (US) Dream of Perfect Sleep (2014) by Kevin Kautzman (US/England) Dust on the Shortbread (2018) by Anything Is Valid Dance Theatre (Australia) Echoes in the Mist (2007) by David Scott (Javeenbah Theatre Company) (Australia) Echte Mensen Wensen [Real People Need] (2015) by Chapeau Theatre Group (Netherlands) Elegy (2016) by Nick Payne (England) Elements (iteration 2) (2021) by Samantha Bews (Australia) Emerge (2016) by Charleen Phelps (Canada) End Games (2015) by Movingstage Marionette Company (England) Enjoy (1980) by Alan Bennett (England) Expressions of Personhood in Alzheimer’s (2006) by Pia C Kontos & Gary Naglie (Canada) Father Dreams (1981) by Mary Gallagher (US) Fever Sleep (2005) by Stephen Koester (US) Fighting for Life (2017) by Brian Daniels (England) Finding Joy (2014) by Vamos Theatre Company (England) Flight (2012) by Michel Wallerstein (US) Flowers From Tunisia (2005) by Lawrence Allen (Wales) Forget Me Not (2022) by Garrett Davis (US) Forget Me Not - The Alzheimer’s Whodunnit (2016) by Robert Gee (England) Forgetting Natasha (2011) by State of Flux (England) Forgotten (2006) by Pat Kinevane (Fishamble Theatre Company) (Rep. of Ireland) Gathering Shadows (2008) by David Scott (Australia) Geordie Sinatra (2012) by Fiona Evans (Scotland) Get Off At Gateshead (2008) by Ian Skelton (England) Girl From the North Country (2017) by Conor McPherson (England) Gracefully Ending (2016) by A. J. DeLauder (US) Grandma Remember Me? (2012) by Belinda Lazenby (England) Half Life (2005) by John Mighton (Necessary Angel Theatre Company) (Canada) Hamari Yaadain/Our Memories (2017) by Hamari Yaadain, Memory Café and Ming Ho (England) Holding the Man (2006) by Tommy Murphy (Australia)

Bibliography of works

225

I See Land Ahead (2017) by Bob Fulcher and Dominic Gately (England) I’m Still Here (2006) by Vrenia Ivonoffski with Gail Mitchell, Renate Krakauer, and Christine Jonas-Simpson (Canada) In Other Words (2017) by The Hope Theatre (England) In Tune with Dementia (2013) by Howard Timms (England) Ingatan (2017) by Fasyali Fadzly (Malaysia) Inside Out of Mind (2013) by Tanya Myers (Meeting Ground Theatre Company) (England) It’s Dark Outside (2012) by The Last Great Hunt (Australia) Italian Funerals & Other Festive Occasions (1996) by John Miranda (Giovanni Mercuri Miranda) (US) Jack and Jill & The Red Postbox (2013) by Claire Webster Saaremets (Skimstone Arts) (England) King Lear (ca. 1606) by William Shakespeare (England) Kje sem ostala? [Where was I?] (2015) by Nina Šorak and Urša Adamič (Slovenia) Laughter in the Shadow of the Trees (1996) by James Prideaux (US) Lavender Years (1995) by Paul Beard (England) Le Père [The Father] (2012) by Florian Zeller, translated by Christopher Hampton (2014) (France/England) Learning The Rules Of Chinese Whispers (2004) by Poorboy Theatre Company (Scotland) Let The Devil Take The Hindmost (2016) by Maya Contreras (US) Lost Lear (2022) by Dan Colley (Rep. of Ireland) Love: The Musical (2008) by Gísli Örn Gardarsson (Iceland) Lovesong (2011) by Abi Morgan (England) Luck Be a Lady (2003) by Michael Park Lucky Numbers (2008) by Mike Yeaman (England) Maggie May (2020) by Frances Poet (England) Man of La Mancha (1964) Book by Dale Wasserman, lyrics by Joe Darion, and music by Mitch Leigh (US) Marjorie Prime(2015) by Jordan Harrison (US) Mela Hawn Xi Manikomju? [Did you think this was a mad house?] (2016) by Alfred Buttigieg (Malta) Memory and Beyond (2018) by Playhouse Youth Theatre (England) Memory Point(s) (2012) by Platform 4 (England) Mind Away (2009) by Jackie Kay and Matthew Kay (Scotland) Missing the Bus to David Jones (2009) by Theatre Kantanka (Australia) Moments (2014) by Oldham Theatre Workshop (England) Monday’s Child (2011) by Brendan Murray (Tutti Frutti Productions) (England) Mother and Son (2014) (Australia) Mrs X (1992) by Marita Wilcox (Australia) My Family: Not the Sitcom (2016) by David Baddiel (England) My Unseen Disappearing World (2012) by Kate Swaffer (Australia) Negative Space (2015) by Loitering with Intent and Dissolve Theatre (England) Never Too Old (2008) by Alan Hopgood (Australia) Old Fools (2018) by Tristan Bernays (England) Old Girls (2009) by Zoe Strachan (Scotland)

226

Bibliography of works

On Ageing (2010) by Fevered Sleep (England) Our Lady of Spills (2009) by Edwige Jean-Pierre (Canada) Our Wonderful World (2013) by Giacomo Ravicchio (Norway) Perish the Thought (2012) by Susan Harris (Australia) Plaques and Tangles (2015) by Nicola Wilson (England) Prism (2017) by Terry Johnson (England) Proof (2000) by David Auburn (US) Pupa (2017) by Emma Fisher (Rep. of Ireland) Really Old, Like Forty Five (2010) by Tamsin Oglesby (England) Risking Happiness (2015) by Reckless Kettle (England) RUFF (2012) by Peggy Shaw and Lois Weaver (Split Britches) (US) Salt, Root and Roe (2011) by Tim Price (England) Seven Stages, Seven Stories (2015) by Arts and AGEing Kansas City (US) Silver Lining (2017) by Sandi Toksvig (England) Six Acts Of Love (2008) by Ioanna Anderson (Scotland/Rep. of Ireland) Smokefall (2013) by Noah Haidle (US) Sons of York (2008) by James Graham (England) State of Grace (2015) by Reckless Kettle (England) Still Alice (2013) by Christine Mary Dunford after Lisa Genova (US) Struck Dumb (l988) by Joseph Chaikin and Jean-Claude van Itallie (US) Sul Concetto di Volto nel Figlio di Dio [On the Concept of the Face, Regarding the Son of God] (2010) by Socìetas Raffaello Sanzio (Italy) Sundowner (2011) by KAGE (Australia) Sundowning (2018) by Nessah Muthy (England) Sunset Strip (2017) by Suzie Miller (Australia) Swags & Tails (2012) by Open Clasp (England) Tangles in Time (2019) by Theater of Witness (US) The Book of Revelations (2017) by Black Hole Theatre (Australia) The Bright Sea (2005) by Vanessa Rhodes (New Zealand) The Carer (2004) by Alan Hopgood (Australia) The Empty Chair (2012) by Alan Hopgood in collaboration with Molly Carlile (Australia) The Garden (2015) by Spare Tyre (England) The Gravitational Pull of Bernice Trimble (2013) by Beth Graham (Canada) The Height of the Storm (2018) by Florian Zeller, translated by Christopher Hampton (France/England) The Holidays (2020) by David Megarrity (Australia) The Humans (2014) by Stephen Karam (US) The Keys Are in the Margarine (2014) by Cindy Diver, Susie Lawless, and Stuart Young (New Zealand) The Language My Mother Speaks (2019) by Samantha Bews (Australia) The Lion’s Face (2010) by Mahogany Opera Group (England) The Merry Dance (2015) by Maggie Aitken (Scotland) The Migration of Birds (2016) Emma Bramley (All Things Considered Theatre) (England) The Nature of Forgetting (2017) by Theatre Re (England) The Other Place (2011) by Sharr White (US) The Outgoing Tide (2011) by Bruce Graham (US)

Bibliography of works

227

The Purple List (2017) by Libby Pearson (England) The Quiet Riot (2013) by Maggie Aitken (Scotland) The Shadow Box (1977) by Michael Cristofer (US) The Visitors (2013) by Sean Riley (Urban Myth Theatre Company) (Australia) The Waverly Gallery (1999) by Kenneth Lonergan (US) The Window (2021) by Rachel Briscoe/Fast Familiar (England) Theatre of Wandering (2021) by Entelechy Arts/OiBokkeShi/Belgrade Theatre Coventry/Belgrade Arts Gym (England) This Is How I Lost My Memory (2008) by Lucy Avery (England) This is Us (2018) by Leeds Playhouse (formerly West Yorkshire Playhouse) (England) This May Hurt a Bit (2014) by Stella Feehily (England) Time Slips (2000) by Anne Basting (US) To Whom I May Concern® (2013) designed by Maureen Matthews (US) Tomorrow (2014) by Vanishing Point (Scotland) Tomorrow’s Wonder … A Window into Our Lives (2021) by Lesley Stretton-Stephens/ Paul Stretton-Stephens/Electra Perivolaris (England) Trial by Bus (1990) by Winnipeg Fringe Festival (Canada) True (2014) by Rosa Laborde (Canada) Tu te Souviendras de Moi [You Will Remember Me] (2014) by François Archambault, translated by Bobby Theodore (Canada) Turns - A Pantomime with a Twist (2011) by Reg Livermore (Australia) Unraveled (2013) by Jennifer Blackmer (US) Vere (Faith) (2013) by John Doyle (Australia) Victoria (1999) by Dulcinea Langfelder (Canada) Visitors (2014) by Barney Norris (England) Waiting in the Wings (1960) by Noel Coward (England) Waiting Room (2014) by Diane Flacks (Canada) Walk Right Up (2002) by Celia McBride (Canada) Walking by Apple Tree Creek (2007) by Ian Brown (Australia) What do you see? (2016) by AZ2B Theatre Company (England) Where or When (2021) by Brian Daniels (England) Winter (2016) by Julie Jensen (US) Wither (2012) by Victoria Fradgley (Rep. of Ireland) Yes! Because … (2017) by Flloyd Kennedy (Australia)

Index

Page numbers followed by “n” indicate notes ableism 4, 82, 130, 164–165 accessibility 99, 152, 164, 177n3, 182, 207, 210, 211 activism 1, 3, 14n5, 24–25, 49, 65n10, 82, 93, 101, 119, 161n4, 195, 197, 209, 211 age/ageing 7–8, 9, 12, 15n8, 15n9, 27, 29–30, 32, 35, 38–39, 57, 64n1, 72, 75, 77, 80, 82, 83, 87n5, 97, 99, 107, 122, 136n1, 145, 148, 156, 165, 171, 172, 173, 190, 191, 192, 194–195, 209, 210, 211; for age-related stigma see ageism; association with dementia 1, 4, 38, 81, 87n6, 107, 172, 173 ageing population 1, 4, 14n6, 36, 72, 73, 75–76, 79, 86, 93, 108, 176, 204 ageism 4, 80, 83, 93, 107, 211 agency 6, 25, 34, 54, 63, 70, 97, 98, 100, 105, 110, 121, 122, 123, 124, 127–134, 195–197, 204, 206 Alice’s Adventures in Wonderland (Carroll) 123 Aliceheimer’s: Alzheimer’s through the Looking Glass (Walrath) 123 Alzheimer’s disease 1, 2, 3, 4, 9, 14n4, 14n7, 26, 41n2, 41n3, 48, 49, 61, 65n2, 70, 75, 77, 78, 81, 82, 85, 99, 106, 108, 109, 110, 115n6, 165, 166, 169, 170, 191, 208, 210 Alzheimer’s Disease: Coping with a Living Death (Woods) 41n3 Amadeus (Shaffer) 28 Arcadia (Stoppard) 28 Aristotle 40, 86, 175

audience: audient experience 39, 40, 66n13, 129–130, 149, 151, 153, 154, 155, 156, 160, 189–190, 201, 216, 217, 219; small group audiences 147, 149, 152, 159, 207, 210; see also dementia-friendly events; relaxed performances autobiography 7, 12, 23–24, 41n1–3, 50, 79, 123, 169, 192, 195; see also pathographic performance Basting, Anne 9, 11, 48–49, 121, 136n3, 145, 196, 205; see also TimeSlips™ battle metaphor 125, 136n5, 174, 176, 211 Beard, Renée 9, 14n4, 24, 166 Beckett, Samuel 7, 15n9, 30 behaviours associated with dementia 3, 6, 7, 15n8, 23, 36, 37, 38, 42n8, 53, 56, 63, 74, 92, 100, 101, 123, 172, 205, 207, 208, 209 Betrayal (Pinter) 28 Billington, Michael 38, 41n4, 71, 174, 176 biomedical 2, 3, 5, 11, 14n4, 58, 79, 85, 97, 101, 107, 122, 123, 148, 166, 167, 192, 204 Bitenc, Rebecca 7, 12, 23, 98, 193, 204 body 2, 10, 42n10, 48, 55, 97–98, 122, 123, 132, 133, 140, 148, 152, 164, 172, 177n1, 192, 195, 196, 202, 203, 204, 205, 216, 217, 218, 219 “BPSD” (behavioural and psychological symptoms of dementia) 92, 208 break the fourth wall 50, 65n3, 129, 131, 149, 183, 216, 218, 219

Index Brecht, Bertolt 73 brilliant sufferer trope 80–83, 87n3, 107 burden 4, 5, 8, 23, 25, 37, 54, 70, 71, 74, 75, 77, 83, 86, 100, 166, 173, 175, 189, 202 caregiving 4, 14n1, 28, 34, 37, 38, 49, 51, 56, 58, 63, 65n12, 74, 84, 85, 87n6, 88n7, 100, 125, 129, 131, 166, 171, 173, 174, 189, 211, 205, 210; see also nursing home care partner/s 4, 14n1, 42n12, 49, 51, 72, 74, 84, 85, 86, 87n6, 88n7, 100, 104, 105, 107, 110, 124, 128, 166, 172, 173, 174, 205, 210 Castellucci, Romeo 171–176 catharsis 37, 40, 86, 112, 113, 114, 136, 141, 145, 150, 161n2, 175, 176, 186, 206, 219 children 14n1, 36, 39, 41, 50, 57, 74, 75, 76, 79, 83, 84, 85, 86, 87n5, 87n6, 100, 103, 104, 105, 106, 110, 111, 112, 113, 126, 128, 129, 130, 141, 148, 159, 173–174, 189; see also parent–child relationship class 12, 82–83, 87n4, 211; see also Brilliant Sufferer trope clinical 3, 12, 13, 29, 34, 35, 39, 52, 53, 54, 60, 63, 64, 76, 78, 80, 92, 93, 98, 101, 103, 106, 107, 109, 115n6, 149, 152, 169, 171, 172, 173, 192, 193, 194 Commedia dell’arte 7 consensus of reality 6, 12, 23, 27, 40, 58, 60, 61, 62, 63, 92, 99, 103, 104, 121, 141, 169, 203, 204 Constellations (Payne) 28 consultation: with medical experts 8, 51, 210; with people with dementia 50, 167, 197, 212 co-presence: bodily co-presence 10, 202, 216, 217, 218; in puppetry 98, 120, 126–134, 135, 140, 216 costume 48, 58, 79, 110, 112, 147, 152–154, 222 dance 9, 10, 11, 12, 13, 55, 56, 62, 98–100, 103, 104, 111–112, 115n4, 125, 130, 145, 146, 147, 152, 153, 156, 158, 201, 204, 205, 210, 216, 217, 218

229

daughter 15n8, 26, 34, 36, 39, 40, 65n2, 71, 72, 73, 75, 81, 84, 99, 104, 105, 128; older daughter as carer plot 36, 42n12, 85, 87n6, 104 death 4, 35, 55, 56–57, 71, 72, 76, 78, 84, 112, 114, 120, 133, 135, 136, 165, 169, 170, 185, 186, 192, 206; brain death 4, 5, 76, 92; living death 41n3, 120, 206; social death 4, 84, 120, 206; see also euthanasia Death of a Salesman (Miller) 7, 28 decline 1, 3, 5, 7, 8, 10, 24, 29, 34, 42n10, 48, 51, 74, 76, 78, 79, 81, 98, 99, 100, 106, 109, 131, 140, 152, 167, 169, 170, 183, 188, 193, 201, 212 dehumanisation 58, 76, 97, 126, 131, 132, 192, 196, 203, 206; see also humanisation demarcation 5, 12, 29, 56, 57–58, 61, 78, 81, 83, 84, 105, 113, 114, 119, 120, 122, 129, 130, 131, 159, 182, 183, 190–192, 203, 205 dementia-friendly events 167, 177n3, 196, 207; see also relaxed performances 167, 177n3, 211) deus ex machina 79, 86, 175–177, 206 diagnosis 2, 3, 7, 12, 14n4, 15n8, 74, 78, 82, 85, 93, 106, 108, 211 disability 3, 7, 12, 13, 14n5, 82, 87n4, 99, 107, 133, 134, 153, 154, 160, 161n4, 164–165, 167, 169, 177n1, 177n3, 207, 211, 222; models of disability 165, 167, 169, 177n1 diurnal rhythm disturbance/day-night reversal 3, 12, 53, 100, 110–111, 124 diversity 14, 107, 148, 211, 212 dolls 57, 129, 132 Don Quixote (de Cervantes) 7 dramaturgy 1, 10, 11, 12, 13, 26, 27, 40, 41, 52, 58, 61, 62, 64, 92, 120, 121, 123, 124, 125, 128, 129, 134, 136n2, 149, 150, 158, 171, 174, 175, 196, 202, 210, 216–217 Elizabeth is Missing (Healey) 123 embodiment 11, 27, 38, 42n12, 62, 78, 93, 97–99, 104, 105, 106, 108, 109, 110, 112, 113, 114, 119, 120, 122, 124, 125, 126, 127–134, 135, 136, 140, 141, 148, 149, 152, 154, 156,

230

Index

158, 169, 202, 203, 204, 205, 217; disembodiment 106, 120, 129, 141, 184 endings 32, 86, 112–114, 134–136, 140, 141, 150, 175–177, 186, 205, 206 euthanasia/assisted dying 2, 70, 71, 76, 77, 80, 85, 86, 165 family 1, 5, 6, 8, 9, 10, 13, 14n1, 14n6, 23, 24, 41n1, 41n4, 50, 51, 52, 53, 54, 55, 63, 64, 70–81, 83, 85, 86, 88n6, 88n7, 92, 93, 99, 100, 105, 108, 110, 115n2, 122, 126, 134, 135, 136, 141, 150, 153, 154, 155, 159, 160, 171, 172, 174, 176, 178n9, 189, 205, 206, 207, 208, 209, 210; see also children; daughter; father; generational discourse; mother; Son father 27, 36, 37, 105, 108, 109, 128, 134, 135, 141, 171, 172, 173, 174, 176, 177, 178n9, 210 The Father, film (Zeller) 35, 41n4, 82 feminism 107, 194; see also gender; intersectionality Floride (Le Guay) 41n4 fragmented 27, 29, 32, 33, 40, 43n13, 48, 49, 130, 145, 146, 150, 151, 154, 155, 156, 158, 159, 160, 186, 188, 193, 195, 218 Fuchs, Elinor 7, 9, 36, 42n12, 85, 87n6, 104, 209 funding 1, 2, 8, 15n10, 207 Gardner, Lyn 28, 36, 37, 150, 151, 156, 159 gender 12, 66n12, 82, 83, 85, 86, 87n4, 87n6, 99, 105, 178n9, 186, 189, 191, 194, 201, 211; see also daughter; mother generational discourse 57, 65n7, 80, 83–86, 87n5, 105, 113, 126, 135, 189, 195, 205, 206, 218; see also parent–child relationship Gibson, Janet 2, 8, 24, 28, 50, 51, 99, 101, 114, 115n1, 148, 177, 195, 201, 206, 209, 210 Gullette, Margaret Morganroth 7, 8 Have the Men Had Enough? (Forster) 24

Hazel: My Mother’s Story (Pieters-Hawke) 41n1 Hazel’s Journey (Pieters-Hawke and Flynn) 41n1 home 13, 14n1, 24, 34, 35, 38, 39, 41n3, 49, 55, 72, 76, 78, 79, 80, 87n2, 92, 93, 98, 99–100, 101, 103, 105, 107, 108, 109, 110, 114, 122, 123, 124, 128, 134, 135, 140, 141, 172, 173, 176, 177, 178n9, 187, 195, 202, 205, 209 horror 103, 124, 172, 185 humanisation 55, 56, 58, 64, 79, 212; see also dehumanisation hypermediacy 10–11, 114, 141, 217 identity 4, 5, 6, 24, 29, 31, 39, 48, 51, 63, 70, 107, 113, 114, 131, 148, 165, 166, 186, 189, 190, 193, 201 immersive theatre 10, 149, 150, 156, 159, 187, 202, 210, 217, 219 inclusion 4, 167, 207, 211; see also accessibility; dementiafriendly events; relaxed performances independence: for people living with dementia 5, 6, 34, 63, 98, 99, 100, 121, 124 infantilisation 38, 57, 84, 105, 129, 130 Innes, Anthea 4 installation 148, 149, 150, 151, 154, 156, 159, 161n3, 167, 168, 177n4, 217 institutionalisation 35, 54, 56, 74, 76, 79, 80, 99, 130, 171 intersectionality 12, 66n12, 82, 83, 87n4, 107, 194, 211; see also Race intervention 9, 207, 208, 209; see also therapy Iris (Eyre) 82 Iris and the Friends (Bayley) 41n1 Iris: A Memoir of Iris Murdoch (Bayley) 41n1 The Iron Lady (Lloyd) 82 journalism 1, 2, 4, 6, 7, 25, 60, 70, 71, 75, 86, 119, 207 joy 6, 25, 31, 47, 55, 58, 80, 103, 105, 125, 127, 131, 133, 151, 160, 177, 207, 208 King Lear (Shakespeare) 7, 9, 15n8, 36, 38, 42n8, 83

Index Kitwood, Tom 3, 4, 52, 97 Kontos, Pia 4, 49, 65n10, 97, 98, 123, 204, 208 language 2, 3, 5, 10, 12, 15n9, 27, 29, 32, 37, 40, 42n10, 48, 51, 52, 53, 56, 61, 63, 75, 76, 78, 81, 85, 98, 99, 100, 103, 106, 115n5, 122, 130, 131, 140, 146, 147, 148, 152, 156, 160, 169, 171, 172, 182, 186, 191, 195, 196, 201, 203, 204, 210, 211, 218 The Last Five Years (Brown) 28 Lehmann, Hans-Thies 121, 146, 149, 182, 188, 201, 205, 218–219 lighting 34, 100, 103, 104, 106, 110, 111, 112, 153, 156, 167, 174, 175, 185, 186, 192 linearity 12, 25, 27, 28, 29, 31, 32, 34, 40, 41, 61, 74, 80, 145, 146, 151, 160, 191, 217; see also non-linearity liveness 1, 2, 7, 10–11, 12, 25, 27, 58, 98, 100, 106, 120, 122, 123, 129, 130, 140, 141, 147, 154, 158, 159, 184, 185, 186, 187, 192, 194, 202, 203–206, 210, 217 Living in the labyrinth: A Personal Journey through the Maze of Alzheimer’s (McGowin) 41n2, 41n3 Lock, Margaret 2, 3 Locke, John 31, 98 Losing the Dead: A family memoir (Appignanesi) 23 loss of self 5–6, 12, 14n7, 28, 31, 32, 40, 41n3, 70, 71, 97, 133, 135, 202, 204; see also Selfhood The Loss of Self: A family resource for the care of Alzheimer’s disease and related disorders (Cohen and Eisdorfer) 14n7, 41n3 magical realism 52 mainstage productions 9, 25, 28, 209 Marjorie Prime, film (Almereyda) 79 mask 10, 62, 77, 80, 120, 121, 122, 125, 130, 135, 207, 217, 218 medication 38, 53, 54, 78, 81, 92, 100; memoir 7, 12, 23, 41n1, 41n2, 41n3, 79, 123 memory 15n9, 26, 27, 29, 30, 31, 32, 33, 38, 48, 60, 61, 64n1, 77, 81, 87n5, 92,

231

97, 98, 99, 100, 103–106, 109, 113, 114, 124, 125, 126, 134, 135, 136, 140, 141, 148, 149, 150–160, 186, 187, 188, 202, 203, 204, 208, 210; autobiographical memory 31, 113, 114, 186; memory loss 3, 5, 9, 10, 12, 15n9, 26, 28, 30, 31, 37, 38, 39, 40, 51, 74, 81, 83, 97, 100, 101, 103, 109, 122, 123, 125, 134, 135, 141, 159, 182, 186, 188, 190, 201 metaphor 4, 5, 14n2, 23, 32, 34, 41n3, 42n8, 54, 60, 62, 63, 70, 71, 76, 79, 84, 99, 100, 107–109, 110, 113, 114, 122, 123, 124, 125, 132, 135, 140, 141, 149, 151, 155, 168, 171, 173, 174, 175, 176, 185, 186, 188, 191, 204, 206 metatheatrical elements 58, 87n5, 131, 182, 185, 188, 218 mimesis 8, 10, 11, 13, 29, 40, 52, 58, 61, 62, 98, 99, 100, 109, 114, 121, 141, 146, 171, 172, 173, 188, 203, 204, 218 mind–body dualism (Cartesian) 122, 205 monologue 25, 29, 31, 56, 84, 106, 131, 182, 185, 188, 210 mother 24, 38, 41n1, 55, 65n2, 81, 84, 85, 87n6, 104, 105, 115n2, 123, 167, 168, 169, 178n9, 183, 189, 190, 192; mother nature 108, 109 music 7, 9, 10, 11, 12, 40, 61, 65n6, 73, 103, 104, 105, 106, 110, 111, 112, 119, 120, 122, 124, 125, 126, 134, 145, 147, 151, 152, 154, 156, 158, 161n1, 174, 184, 197, 208, 216, 217; see also sound design My Journey into Alzheimer’s Disease (Davis) 41n2 narrative identity 5, 31, 39, 186 non-linearity 23, 25, 26, 27, 28, 29, 92, 126, 130, 140, 149, 150, 154, 156, 159, 183, 193, 194, 201, 205, 217; see also Linearity nursing home 13, 35, 36, 42n12, 49, 50, 52–57, 58, 60, 61, 62, 63, 65n9, 65n12, 72, 74, 76, 78, 79, 86, 87n2, 92, 107, 114, 119, 121, 123, 126, 129, 131, 140, 141, 147, 148, 153, 160, 173, 176, 187, 195, 197, 205, 207, 208

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Index

objects 10, 12, 13, 28, 34, 48, 58, 81, 98, 100, 101, 108, 109, 120, 122, 124, 125, 127, 128, 129, 130, 131, 132, 133, 134, 136, 140, 145, 147, 156, 157, 186, 187, 190, 217 opera 7, 40, 103, 104, 105, 119–120 “Other” 120, 128, 129, 133, 136, 201, 203 outside 54, 104, 105, 108, 113, 122, 123, 124, 134, 135, 140, 141, 147, 153, 156, 172, 178n9

168, 175, 182, 183, 184, 186, 187, 192, 194, 217 promenade 149–160, 161n3, 167–169, 210, 217, 219 props/properties see objects puppetry 10, 11, 12, 13, 58, 78, 98, 119–136, 140, 146, 196, 197, 201, 205, 208, 216, 217, 219; shadow puppetry 12, 121, 122, 123, 124, 140, 146, 219

paranoia 35, 36, 37 parent–child relationship 15n9, 36, 57, 74, 83, 84, 86, 87n6, 105, 112, 128, 171, 174, 176, 177, 205 passive 3, 32, 74, 98, 99, 112, 119, 120, 123, 125, 129, 134, 135, 136, 140, 153, 156, 159, 174, 189, 193, 196, 208, 209 pathographic performance 192–195, 202; see also autobiography Peel, Elizabeth 72, 74 person-centred care 3, 31, 52, 53, 57, 58, 204, 207; see also Kitwood, Tom personhood 3, 4, 23, 24, 52, 97, 176; see also selfhood physical theatre 10, 12, 13, 29, 34, 39, 65n6, 98, 99, 100, 103, 105, 106, 109, 110, 111, 114, 134, 145, 152, 201, 203, 204, 205, 210, 216, 218 place 13, 23, 26, 29, 32–36, 40, 42n11, 49, 54, 55, 61, 63, 76, 77, 79, 80, 92, 93, 98, 99, 100, 101, 103, 108, 109, 113, 123, 124, 126, 135, 141, 153, 161n2, 171, 172, 173, 187, 195, 201, 202, 204, 205; see also home; nursing home; placelessness placelessness 12, 29, 32, 33, 34, 35, 40, 54, 92, 171, 173, 174, 187, 202, 204, 205, 217, 218 politics 2, 3, 11, 13, 70, 71, 72–78, 79, 80, 87n1, 92, 93, 119 postdramatic theatre 121, 141, 145–202, 203, 205, 218–219 privacy 54, 57, 100, 106, 109, 126, 155, 156; see also independence projection 10, 11, 12, 48, 52, 54, 58, 60, 62, 63, 65n6, 85, 106, 109, 110, 111, 121, 122, 123, 124, 125, 126, 130, 134, 135, 145, 146, 147, 149,

quality of life 8, 77, 208 queer 107, 190, 194 race 51, 55, 65n12 realism 10, 11, 58, 74, 100, 133, 171–172, 174, 218 reality 6, 9, 10, 12, 13, 23, 27, 29, 35, 37, 40, 41, 42n13, 52, 56, 58, 60, 61, 62, 63, 64, 65n4, 79, 86, 92, 99, 100, 103, 104, 105, 107, 112, 121, 126, 131, 133, 141, 169, 172, 177, 187, 188, 202, 203, 204, 210, 217 reframing dementia 12, 123, 124, 196 relaxed performances 167, 177n3, 211; see also dementia-friendly events religion 14, 51, 56, 87n4, 119, 120, 164–171, 173–176, 178n7 Remind me who I am, again (Grant) 24 research-based performance 47–64, 65n2, 65n5, 65n6, 65n9, 65n10, 99, 122, 148, 150–151, 168, 196, 204 “right kind” of dementia story 8, 9, 24, 28, 51, 112, 114, 134, 175, 177, 206, 212 robot 42n12, 75, 77, 78–79, 86, 176 Robot and Frank (Schreier) 79 Sabat, Steven R. 4, 5, 6, 15n7, 23, 29, 82, 97, 146, 148, 204 Scar Tissue (Ignatieff) 24 science 3, 7, 15n10, 74, 75, 76, 81, 119, 130, 168, 169, 170, 176, 178n7; see also Biomedical selfhood 5, 6, 24, 31, 32, 57, 97, 98, 114, 140, 146, 148, 169, 176, 202, 203, 204, 207; see also loss of self; personhood set 10, 26, 27, 32, 34, 35, 40, 42n5, 54, 78, 99, 101, 106, 108, 109, 110, 112, 113, 124, 140, 171, 172, 173, 187, 197n2, 202, 216, 218; see also place

Index Show Me the Way to Go Home (Rose) 41n2 son 24, 88n7, 99, 104, 108, 134–135, 140, 141, 171, 172, 173, 176 sound design 2, 11, 12, 29, 32, 33, 34, 42n7, 42n9, 52, 55, 56, 58, 60, 61, 62, 63, 78, 100, 110, 111, 115n7, 121, 122, 125, 146, 151, 154, 156, 160, 167, 174, 194, 210, 216, 217; see also music spirituality see religion stigma 2, 4, 5, 49, 72, 107, 177; see also ageism Still Alice, film (Glatzer and Westmoreland) 82, 197 Stoppard, Tom 28 stroke 51, 166, 182, 183, 185, 186, 187, 188, 190, 191, 192, 194, 197n3, 197n4 Sundowner’s syndrome 101, 103, 124 Supernova (Macqueen) 82 Swaffer, Kate 14n1, 24, 101, 209 Symptoms of dementia see memory; behaviours associated with dementia; language technology: performance technologies 12, 58, 121, 122, 123, 125, 136n4, 140, 141, 146, 175, 186, 188, 204, 217; see also projection; sound design therapy: arts-based therapy 9, 57, 208, 209; doll and puppet therapy 57, 119, 208; drama therapy 9, 66n13, 208; performance as therapy 193, 195, 208; reminiscence therapy 48, 64n1; therapy clowns 207, 208; see also intervention time 10, 23, 26–32, 34, 39, 54, 60, 98, 100, 103, 106, 110, 111, 145, 147, 154–156, 173, 195, 202, 203, 205, 210, 216, 217; see also timelessness

233

timelessness 23, 29–32, 40, 60, 61, 103, 153, 154–156, 159, 202, 204, 205, 217 TimeSlips™ 48–49, 55, 121, 122, 126, 129, 131, 133, 141, 145, 147, 196 tragedy 2, 8, 28, 50, 82, 86, 113, 114, 133, 134, 136, 141, 145, 160, 161n1, 172, 175, 186, 189, 191, 193, 201, 202, 206 undressing motif 112, 113, 114, 134, 135, 141 unravelling 31, 32, 86, 135, 141; see also loss of self uncanny 120, 136n1 unreliable narrator 37, 42n13 verbatim theatre 50–52, 55, 121, 131, 219 video in performance 10, 11, 12, 110, 111, 122, 168, 182, 183, 184, 186, 192, 217 The Visit (Shyamalan) 103 voiceover 29, 55, 60, 61, 62, 103, 106, 108, 113, 126 wandering 3, 11, 60, 101, 122, 123, 210 The Wellcome Trust 1, 8, 15n10 What the Hell Happened to my Brain? Living Beyond Dementia (Swaffer) 24 Woodward, Kathleen 39 younger-onset dementia 12, 72, 82, 87n3, 99, 107, 108, 110, 115n7, 197 youth 27, 50, 52, 57, 65n7, 80, 81, 82, 83, 84, 87n5, 104, 135, 173–174, 192 Zeilig, Hannah 2, 4, 7, 9, 14n2, 64, 124, 174, 185, 186, 206