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Download pdf Dementia Narrative And Performance Staging Reality Reimagining Identities 1St Edition Janet Gibson ebook full chapter
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Dementia,
Narrative and
Performance
Staging Reality, Reimagining Identities
Janet Gibson
Dementia, Narrative and Performance
Janet Gibson
Dementia, Narrative
and Performance
Staging Reality, Reimagining Identities
Janet Gibson
UTS Insearch
University of Technology
Sydney, NSW, Australia
Cover illustration: FAIRY FLOSS. Photo of Phillip Mills and Katia Molino from Theatre
Kantanka’s production of Missing the Bus to David Jones. Photo by Heidrun Löhr. Used
with permission of Carlos Gomes.
This Palgrave Macmillan imprint is published by the registered company Springer Nature
Switzerland AG.
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
To Julia, Mary-Jane, and Sandy, with love
Acknowledgements
vii
viii ACKNOWLEDGEMENTS
thinking. From first reading her article “God is a Talking Horse” to shar-
ing ideas over breakfast in Milwaukee, Anne continues to both impress
and surprise me with the depth of her intellect and her unwavering com-
mitment to creativity.
Carlos Gomes, the artistic director of Theatre Kantanka, was the soul of
generosity, answering questions and sending me DVDs and other material
which helped me dig deeper into Missing the Bus to David Jones. This the-
atre piece deserves an unquestionable place in the canon of great (demen-
tia) theatre. Thank you, Kate Denborough, for filling me in so promptly
on certain details to do with Sundowner.
Thanks, Vicki Sanchez, for all the information about The Bucket List.
Vicki is one of those very important dementia care workers who love what
they do and do it so well, despite the appalling pay. I hope this situation
changes for all aged care workers in the not too distant future. My grati-
tude also extends to all the people I worked with in TimeSlips sessions at
Uniting Locke Haven : your creativity and imagination refreshed and
inspired me when I was developing many of the ideas which form the
backbone of this book.
The delightful Maureen Matthews and I have been emailing each other
for quite a few years now. I was very lucky to see a performance of her
community readers’ theatre for people living in the early stages of a
dementia diagnosis—To Whom I May Concern®—when I was in New York
in June 2018, an experience which deepened my enthusiasm for this
modality. Thanks also to performers Therese, Julie, and David for wel-
coming me so warmly to the rehearsal before the performance.
My deliberations on To Whom I May Concern® were recently published
in RiDE, adapted for the special issue ‘On Access’. I would like to thank
the anonymous reviewers for input to that article which also helped me in
fashioning the corresponding book chapter. Collette Conroy, RiDE’s edi-
tor, has been very helpful and encouraging about my work since I first met
her at the Performance and Disability working group at the IFTR/FIRT
Stockholm conference 2016. A lot of other people in that group have
heard out my ideas at various stages and I thank you all but in particular
Yvonne Schmidt and Arseli Dokumaci. Arseli—thanks for your input on
some of the chapters, your willingness to do so, and your extremely per-
ceptive feedback. I am indebted to you for the comment in Chap. 8 on the
proliferation of diseases in this day and age in which there are not many
disease-free bodies left to discipline, in Foucault’s dispensation. Likewise,
thanks to Kate Maguire-Rosier and Catherine Maitland, my ad hoc
ACKNOWLEDGEMENTS ix
3 Narrative Regimes 59
xi
xii Contents
Index 279
Abbreviations
xiii
xiv Abbreviations
Fig. 5.1 ‘Fairy Floss’. Katia Molino and Phillip Mills. Missing the Bus to
David Jones. Theatre Kantanka. Photo by Heidrun Löhr. Used
with permission of Carlos Gomes. (The photo shows a man in
a blue, grey and red cardigan wearing a green party hat and a
woman dressed in a black and white houndstooth jacket and
white hat. They are up very close to each other’s faces and are
eating and feeding each other white fairy floss 143
Fig. 5.2 ‘The Bus Stop’. Katia Molino waiting for the bus. Missing the
Bus to David Jones. Theatre Kantanka. Photo by Joanne Saad.
Used with permission of Carlos Gomes. (The photo shows a
woman dressed in a black and white houndstooth jacket, a white
hat, and white gloves, sitting on a seat clutching a black and
white handbag. She is looking off into the distance as if
expecting a bus to arrive any moment. A Filipino nurse or
care attendant wearing black pants and a white t-shirt is
approaching her) 151
Fig. 6.1 Marcia Bannister, Bucket List Sales Manager, and Jessie
Anderson, Bucket List Assistant Sales Manager. Video still from
Finding the Why. Enabling Active Participation in Life in Aged
Care (Fire Films). Still used with permission of Corrine
Maunder. (The photo shows two old women with short hair
sitting on an orange, red, and yellow striped couch with a very
high back. Marcia is on the left. She is taller than Jessie and has
short white hair. She is wearing a blouse with red, yellow, pink,
and green leaf patterns on it. Jessie is on the right with short
brown hair. She is wearing a white top with white beads. They
both have white mugs in their hands) 199
xv
xvi List of Figures
first heard it, is not the whole story either. In sum, I found myself part of
a story for which no template could be found, at that time, in the existing
repertoire.
Narrative sociologist Arthur Frank (2010) contends that, although
people tell their own stories about their lives, they do not make these sto-
ries up by themselves. There is a limited repertoire of stories to be told
from which we then tell ‘our’ stories, as is very evident in the case of
dementia. I now label this restricted arsenal of narratives the ‘right kind’
of dementia story, in Lyotard’s terms (1984), a ‘grand narrative’\, circu-
lating 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 tsu-
nami’ coming to destroy lives and push societies towards catastrophe. It
may also tell of long-suffering carers coping with the demands of aggres-
sive, forgetful, dependent, loved ones who are draining personal or famil-
ial emotional, physical, and financial resources. These dependent humans
are framed as ‘burdens’ to the economy, to society, to us all.
In the twenty-first century, in most Western cultures, these types of
stories fit into an overarching performance ‘framework’, which perfor-
mance scholar Jon McKenzie has labelled a “mode of power” (2001, 25).
This mode determines the ways in which, and the contexts where, people
with dementia ‘perform’ their stories and selves, mainly due to the ascen-
dancy of neoliberal capitalism. Neoliberalism can be defined as:
certain ways for people with dementia and their care partners. I contend
that this mode currently predominates among others, regulating both the
manners in which, and the situations where, people with dementia ‘per-
form’ their stories and selves. In the domain of human care, performance
as a “mode of power” (ibid.) insists on task efficiency over quality time,
results over relationships, and measurement over magnanimity, especially
in care homes and in interpersonal relationships.
My encounter with dementia and the subsequent institutionalisation of
my mother in a care home opened new insights into both performance as
a “mode of power” (ibid.) and the relationship between stories and ethics.
Constantly revolving in my mind at the time of my mother’s diagnosis and
beyond were the words of virtue ethicist Alasdair MacIntyre: “I can only
answer the question ‘What am I to do?’ if I can answer the prior question
‘Of what story or stories do I find myself a part?” (2011, 250)—words
which deepened and complicated the research I was undertaking at the
time into verbatim theatre and ethics. I began to wonder if theatre pieces
that worked verbatim—using the words and stories of people with demen-
tia—existed, and if so, what ethical provocations they would offer.
Verbatim theatre normally relies on the life stories of ‘reliable’ narrators
and, in oral history projects anyway, the assumption of the cognitive
“competency” of the primary teller (Pollock 2005, 3). But people with
dementia are often ‘unreliable narrators’4 who frequently struggle to
remember their life stories or segments of them and who regularly resort
to fabrication in the telling. In part because of this, and because of the
(often gradual) decline in many of their cognitive and physical capabilities,
they are repeatedly stereotyped as the “living dead” (Behuniak 2011) and
not seen as ‘real’ people.5
Over the last twenty years or so, and across the globe, there has been an
‘explosion’ of people’s stories and words deployed in theatre productions
across the above-mentioned performance genres. Performed narratives
have included tales of trauma, victimhood, and crisis giving voice to the
socially, economically, or culturally marginalised. These narratives usually
aim to facilitate sociopolitical change for the participants, and/or the spec-
tators, as well as change at a broader social level. Some of these produc-
tions feature the people themselves; in others, actors perform. The
performances may take place in theatres, community centres, or similar
venues. They raise numerous issues and challenges for the theatre makers
creating them, and to their viewing audiences, which theatre and perfor-
mance studies scholars have been keen to interrogate.6
Apart from the emergence of a growing number of professional and
semi-professional art theatre productions dealing with dementia across
Western stages, “theatre of the real” (Martin 2013) productions about
dementia have also started to surface. Certain productions have been cre-
ated using the textual input of people with dementia (and their families, in
some instances). So, what are the challenges to theatre makers working
with these practices when people can no longer say who they are or tell
8 J. GIBSON
dementia and the people who live with it? In the other chapters, in some
to a greater extent than others, I reverse this question to ask: How might
dementia shift or add to questions, debates, and issues in theatre and per-
formance studies? The case studies analysed relate to ideas drawn from all
the above-mentioned literatures, where pertinent, including reminiscence
and the care home. I will now briefly introduce each of these literatures
and their key theorists.
Dementia studies can be delineated into five main, somewhat diverse
approaches: medical and biomedical, personhood, embodiment, relational
care, and social citizenship. Firstly, medical and biomedical approaches
dominate the existing research into, and treatment of, Alzheimer’s disease
and other dementias.9 They are “situated within a discourse of loss” (Beard
2004, 417) and typically prioritise drug treatments or molecular testing
over attention to the social and ethical complexities that dementia also
entails. They advance the separation of the physical, mental, and cultural
dimensions of illness and ageing, reducing the ageing body (and many
others) to a potential diagnosis, while the sociocultural, emotional, and
phenomenological aspects of illness and ageing for individuals and their
families are quite often ignored (ibid., 416).10 Factors like race, class, gen-
der, religion, sexual orientation, disability, family of origin, and cohort
effects will all contribute to differences in the experiences of both ageing
and dementia, but these factors are beyond what medicine and biomedi-
cine generally offer patients.
Secondly, the ‘personhood’ approach, a challenge to the biomedical
episteme, emanated as a reaction to the single-minded focus on cognition
and neurological changes in the brain that had dominated the dementia
industry until the 1980s (Gilleard 2000). This approach opposes the
mainly negative ideas about the person diagnosed with dementia that
arguably dominate studies in biomedicine (Leibing 2006, 254), recognis-
ing the person, not just the disease. It continues to gather numerous new
practices under its mantle. A person-centred focus in dementia care was
initiated principally through the work of social psychologist Tom Kitwood,
largely through the influence of his groundbreaking text Dementia recon-
sidered: The person comes first (1997), and is steadily becoming a seminal
paradigm. Personhood is conceptualised from the standpoint of interac-
tionist social theory, the belief that selfhood is socially acquired and sus-
tained (Kontos 2012, 330).
1 MY MOTHER’S STORY, MY STORY 11
studies scholars (see Davis 1995, 2002, 2013; McRuer 2006; Siebers
2006, 2008) recognise the category of disability to be intensely problem-
atic and unstable. This is for many reasons, including that it swells and
contracts to encompass so-called normal people as well (Davis 1995, xv);
that is, all people chance stepping on and off the disability continuum,
especially as they get sick, age, or are diagnosed with diseases like demen-
tia. Mike Oliver and Len Barton are exceptions here, arguing that the
current interests pursued by many contemporary disability studies scholars
(postmodernism, representation, and embodiment) are hard to justify in
terms of their “immediate relevance to the struggles of disabled people to
lead a decent life” (2002, 8). Basically, disability studies is useful to the
pursuit of my arguments as it helps to clarify how the notion of ‘normalcy’
has been constructed and its intrinsic relationship to what is commonly
regarded as not ‘normal’, across many cultures, that is, to disability. In this
endeavour, I am principally aided by the work of Lennard Davis (1995)
and Tobin Siebers (2006, 2008, 2010). I also work with research in per-
formance and disability studies.14
As with age studies scholars, some post-structuralist disability scholars
have also drawn on Judith Butler’s theories of performativity to theorise
the discursive construction of disability identity. Both Petra Kuppers
(2003, 2011) and Robert McRuer (2006) argue, following Butler, that as
with gender, cultural scripts about disability can and should be resisted
and disrupted along with the discursive practices that produce both the
disabled and the able body. As old age may be experienced as disabling by
some, and as dementia is ordinarily seen as both a cognitive impairment
and a cognitive disability, representations of (old) people with dementia
must be theorised on a spectrum stretching between the disciplinary loca-
tions of age and those of disability studies.
However, the relationship between age studies and disability studies
holds many tensions. Age studies scholarship tends to undermine assump-
tions that ageing disables; it challenges commonly held generalisations
that all old people are “warm but incompetent” (Basting 2009, 26).15
Margaret Morganroth Gullette (2004, 13) proposes that the “[d]ecline
narrative” runs popular discourses on ageing. On the other hand, some
disability scholarship critiques assumptions that the able, fit, and ‘normal’
body is always free from disability, using old age as the point towards
which all able bodies are heading, a kind of ‘disabling normalcy’. Feminist
disability scholar Susan Wendell maintains that unless we die early “we are
all disabled eventually” (1996, 18).
14 J. GIBSON
In this book, I engage disability studies with age studies to show how
the abilities of people living with age-related dementia are greater than
imagined, while at the same time acknowledging the actuality of their
limits. To further complicate matters, the relationship between dementia
and disability resembles “planets spinning on different axes” (Shakespeare
et al. 2017, 1). In disability sectors, dementia is typically perceived as a
health issue; in dementia sectors, people with dementia do not usually
think of themselves as disabled (ibid.). In this book, I mine both dementia
and disability studies where necessary to support my arguments.
I also take some direction from particular theatre and performance
studies scholars working on refugee theatre, primarily Alison Jeffers (2006,
2008, 2009, 2012) and Caroline Wake (2010a, 2010b, 2011, 2013,
2018). I do this because refugee theatre productions across the globe have
tended to rely on the verbatim genre or other “theatre of the real” (Martin
2013) techniques. Given that there is very little work in theatre and per-
formance studies on “theatre of the real” (ibid.) and dementia, the aca-
demic work that has emanated from scholars working on refugee theatre
provides a useful parallel to concerns that match mine—a point I consis-
tently make in Chap. 2, where I attempt to forge this parallel in more
detail concerning the links between the crisis of dementia and the crisis of
asylum. Consequently, in Chap. 2, I also cite the occasional refugee stud-
ies scholar (e.g. Peter Nyers 2006).
But the primary disciplinary location of this book is in theatre and per-
formance studies. I conflate the two disciplines, as they are “merging and
intermingling in various ways” (Balme 2008, 12), which makes it increas-
ingly difficult to separate theorists into camps. However, disciplinary dif-
ferentiations, which can be tracked historically, do still exist (see Balme
2008.). Today, theatre studies has many fields, with a strong focus on live
art performances, and the study of texts (ibid., 11). Work within perfor-
mance studies has inclined towards Richard Schechner’s “is” or “as” of
performance (2013, 38). The former centres on that which is historically,
socially, culturally, and traditionally accepted to be performance; the latter
refers to the way in which events or practices can be seen to be perfor-
mances, including gender, sexuality, and ethnicity, among many other cat-
egories. In this way, “performance studies grants itself a wider range of
‘objects’ or case studies than theatre studies might” (Wake 2010a, 26).16
In essence, my examination of both “theatre of the real” (Martin 2013)
and applied theatre and performance falls under the broad moniker of
1 MY MOTHER’S STORY, MY STORY 15
theatre and performance. The works discussed in this book dialogue with
the notion that we perform ourselves on a continuum that ranges from
daily acts of the self to systemised stage performances and rituals both
sacred and secular (ibid.).
This book also references theories of narrativity, including the work of
Arthur Frank (2010) and Paul John Eakin (1999, 2001, 2006, 2008), as
well as that of narrative philosopher Galen Strawson (2004). Additionally,
input comes from medical anthropology (Leibing and Cohen 2006; Lock
2013) and medical history (Ballenger 2006; Beach 1987; Whitehouse and
George 2008). Other material is drawn on at various stages: for example,
the work of philosophers Jacques Rancière (2004, 2007) and Ian Hacking
(1995, 1999).
My methodological approach is varied. Adopting “performance analy-
sis” (Pavis 2003) for my examination of both art theatre and applied the-
atre productions, I draw on notes taken visiting live performances,
watching videos of the performances (Balme 2008, 136), and referencing
“supplementary documents” (Pavis 2003, 40), including theatre reviews,
photographs, programmes, and other outreach materials like education
packs and websites. As well, I opt for (post-structuralist) discourse analysis
due to my sustained interest in how discourses shape reality and power-
fully influence what gets ‘storied’. ‘Discourse’ is used here in the
Foucauldian sense, to do with how knowledge is composed alongside the
social practices, subjectivities, and power relations built into such knowl-
edges, as well as into the relations between them. More than just ways of
thinking and producing meaning, discourses constitute the body, mind,
and emotional lives of the subjects they seek to govern (Weedon 1987,
108). I temper my acknowledgement of the power of discourses to consti-
tute bodies and minds by recognising that biological, material, and
embodied elements also play a role in the construction of dementia sub-
jectivities. Both post-structuralist and phenomenological insights are use-
ful for theorising dementia personhood. For people diagnosed with
dementia, the body speaks, conveying meaning, even if the world in which
they live is created, in large part, linguistically (Vasterling 2003, 212).
Given the material force of discourses in forming and reforming the
normal, the natural, and the true, I am primarily concerned with excavat-
ing the values and politics underlying these discourses in twenty-first-
century Western cultures, both to make them visible and to disturb their
facile endorsement. In view of my interest in the discourses circulating
about age-related dementia in the mass media and on the internet, I
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Tutto ciò che acquistava lo schiavo, l’acquistava per il padrone; ma
come già narrai nel capitolo delle Tabernæ, essendo la gran parte
della popolazione industriale schiava, i padroni trovavano di loro
convenienza di interessare i loro schiavi nei profitti delle loro
industrie e di lasciar loro la libera disposizione d’un peculio, il qual
valeva ad alimentare il lavoro loro. Se lo schiavo agiva in suo proprio
nome, in caso di frode veniva perseguitato coll’actio tributoria; ma se
agiva come mandatario del suo padrone, era obbligato come
qualunque altro mandatario.
Gli schiavi si compravano sul mercato, ivi portati dagli speculatori e
dai pirati e, se provenienti da nazione indipendente, godevano di
miglior favore. Gli schiavi spagnuoli e côrsi costavano poco, perchè
facili al suicidio per sottrarsi alla schiavitù; ma i Frigi lascivi e le
gentili Milesie erano in comparazione carissimi. Fu stabilita in
seguito una tariffa secondo l’età e la professione; sessanta soldi
d’oro per un medico, cinquanta per un notaio, trenta per un eunuco
minore de’ dieci anni, cinquanta se maggiore.
Ho detto più sopra che anche speculatori recavano gli schiavi al
mercato; ne recherò due esempj di reputati uomini: Catone li
comperava gracili ed ignoranti e fatti gagliardi ed abili, li rivendeva;
Pomponio Attico, l’amico di Cicerone, faceva altrettanto, per
rivenderli letterati.
Nella casa gli schiavi compivano tutti gli uffizii dai più elevati agli
umili; sed tamen servi, come diceva ne’ paradossi Cicerone,
parlando di quelli che erano applicati a’ più nobili servigi; epperò ve
n’erano varie classi. Vernæ chiamavansi gli schiavi nati nella casa
del padrone; ascrittitii quelli che per lo spazio di 30 anni stavano in
un campo e non potevano vendersi che col fondo; consuales quelli
che servivano al Senato; ordinarii quei dell’alta servitù, e avevan
sotto di essi altri schiavi; vicarii, mediastini, quelli che esercitavano
opere vili nella casa. Ciascun uffizio dava il nome allo schiavo:
nomenclator era quello che ricordava ed annunziava i nomi di coloro
che giungevano, ed alla cena il nome e i pregi delle vivande;
ostiarius e janitor il portinajo, atriensis quello che stava a cura
dell’atrio ed aveva la sorveglianza degli altri schiavi; tricliniarchas il
servo principale a cui spettava la cura di ordinare le mense e la
stanza da pranzo, archimagirus il maestro de’ cuochi o
sovrintendente alla cucina, dispensator il credenziere, pronus il
cantiniere, viridarius e topiarius lo schiavo il cui officio particolare
consisteva nell’occuparsi dell’opus topiarium, che comprendeva la
coltura e conservazione delle piante e degli arboscelli, la
decorazione dei pergolati e de’ boschetti, anagnostæ erano i lettori,
notarii o librarii gli schiavi segretari del padrone, silentiarius quel che
manteneva il silenzio e impediva i rumori: per servigio poi delle
dame, la jatromæa era la schiava levatrice; le cosmetæ e le psecæ
le schiave il cui ufficio era attendere alla toaletta delle signore ed
ajutarle a vestirsi ed ornarsi, come sarebbero le nostre cameriere;
sandaligerulæ quelle che portavano le pantofole delle loro padrone,
seguendole quando uscivan di casa; vestispicæ quelle che curavano
e rimendavano gli abiti della padrona; vestisplicæ quelle che le
custodivano, o come diremmo noi, guardarobiere; ornatrices le
schiave che attendevano all’acconciatura del capo della padrona,
focaria la guattera, ecc.
V’erano poi i pædagogiari, giovani schiavi scelti per la bellezza della
persona ed allevati nella casa dei grandi signori a’ tempi dell’impero
per servir da compagni e pedissequi dei figliuoli de’ loro padroni,
come anteriormente v’erano i pædagogi, che vegliavan alla cura ed
agli studj de’ medesimi, i flabelliferi, giovinetti d’ambo i sessi, che
portavano il ventaglio della padrona, i salutigeruli che recavano i
saluti e i complimenti agli amici e famigliari del padrone; i nani e
nanæ, pigmei cui si insegnavano musica ed altre arti per diletto de’
padroni; fatui, fatuæ e moriones erano quelli idioti deformi che si
tenevano per ispasso, i quali
. . . nunc Saliaribus
Ornare pulvinar Deorum
Tempus erat dapibus, sodales [107].
2 3
V. Turinio Porcio
1 2
Fundanio Nasidieno
3 1
Vario Nomentano
Lec. Lectus
3 1 2
summus imus
S.
Mecenate Vibidio
Batatrone
Medius Lectus.
Da ciò si vede, come non sedessero, ma giacessero a tavola, e per
istare alquanto sollevati si appoggiavano col gomito sinistro al
guanciale. Solo le donne stavano prima assise, ma poi imitarono
presto gli uomini: i figli e le figlie pigliavano posto a piè del letto; ma
sino all’epoca in cui ricevevano la toga virile restavano assisi.
Queste mense erano spesso di preziosa materia e di ingente lavoro.
Così le descrive Filone nel Trattato della vita contemplativa, citato
dall’Averani: «Hanno i letti di tartaruga o di avorio, o d’altra più
preziosa materia, ingemmati per lo più, coperti con ricchi cuscini
broccati d’oro e mescolati di porpora o tramezzati con altri vaghi e
diversi colori per allettamento dell’occhio.» — Che ve ne fossero
anche d’oro lo attesta Marziale nel libro III de’ suoi Epigrammi, epigr.
31:
. . . . Cereremque, canistris
Expediunt, tonsisque ferunt mantilia villis [116],
Acria circum
Rapula, lactucæ, radices, qualia lassum
Pervellunt stomachum, siser, alec, fæcula coa [117].