Volume 21, No. 3, Art. 2 – September 2020

Knowledge as Embodied, Imaginative and Foolish Enactment: Exploring Dementia Experiences Through Theater

Julia Gray, Sherry L. Dupuis, Pia Kontos, Christine Jonas-Simpson
& Gail Mitchell

Abstract: In this article, we provide an example of a performance-research project to advance understandings of the ways artistic and scientific processes work in conversation. Drawing on the research-informed play Cracked: New Light on Dementia, we consider the interrelationship among cultural narratives (including the perpetuation of oppressive narratives of marginalized people), aesthetic and artistic exploration (sensory and emotional exploration together with dramaturgy and theatricality), and social critique for the purposes of broader social change. By explicating three interrelated "acts" of our process, including preparation, execution and exhibition (THOMPSON, 2015), we share the ways artistic practices were flexibly used to generate new cultural knowledge about the ways we think, feel, and sense about dementia to mobilize social good. With our work we criticize institutional and research structures that deny arts processes the status of "research," as well as challenge traditional modes of knowledge and knowledge production.

Key words: arts-based research; research-creation; research-informed theater; performance research; cultural production; social change; dementia

Table of Contents

1. Introduction

2. Background—Cracked: New Light on Dementia

3. Acts of Our Process for Cracked

3.1 Act 1: Preparation

3.2 Act 2: Execution

3.3 Act 3: Exhibition

4. Conclusion







1. Introduction

Humans have a long history of creating theater and performance as spaces for community engagement, cultural production, entertainment, as well as social change. As a live and gestural art form, theater specifically provides a physical and social space for collective and individual engagement with and interpretation of ideas, feelings, and assumptions. Given this, it is no surprise that social and health researchers have begun to draw on theater as a way to engage audiences in their research processes and with their findings (e.g., BELLIVEAU & LEA, 2016; GOLDSTEIN, 2012; GRAY et al., 2011; HARRIS & JONES, 2016; HARRIS & SINCLAIR, 2014; JONAS-SIMPSON et al., 2012; KAZUBOWSKI-HOUSTON, 2010; KAZUBOWSKI-HOUSTON & MAGNAT, 2018; KONTOS et al., 2012; MITCHELL, JONAS-SIMPSON & IVONOFFSKI, 2006; MITCHELL et al., 2011). With these cross-paradigmatic projects, questions have emerged about how artistic processes work in conversation with scientific methodological frameworks and the ways that these processes might gain recognition within the sciences (BOYDELL et al., 2016; HODGINS & BOYDELL, 2014). As part of critical arts-based research, social scientists have begun to use performance during any phase of research, including data collection, analysis, interpretation, and representation (see for example BOYDELL, 2011; CHAWLA, 2008; ROBERTS, 2008). This deliberate overlapping of performance and research is "transformative and inspires us to reflection, rewards our attention with introspection, and moves us to ethical, political action necessary to initiate positive change in our social interactions" (FINLAY, 2014, p.531). However, parallel to these discussions and over approximately the past decade, artists and arts/humanities scholars have begun to articulate their exploratory practices with an interest to legitimize their work in academic spheres without relying on more traditional scientific frameworks (CHAPMAN & SAWCHUK, 2015; LOVELESS, 2015; LOWRY, 2015; MANNING, 2016). From this humanities and arts-infused "research-creation,"1) artistic processes are understood to be openly knowledge generative, where greater attention is paid to what can be gleaned through making art, such as mastery of technique and aesthetic concerns, as well as resultant insights. Our intention with this article is to explore the location of our project at the intersection of the social sciences (i.e., critical arts-based research) and the arts and humanities (i.e., research-creation), and how this location gave rise to our unique theater creation process as a form of inquiry. [1]

In academic literature, researchers and scholars have written remarkably few examples that outline the creation process of a theater project which crosses disciplinary and paradigmatic boundaries. Through this article we provide an example of such a play and its creation—Cracked: New Light on Dementia—in the context of our work as a creative-research ensemble called Collective Disruption (COLLECTIVE DISRUPTION, 2017; GRANI & GRAY, 2018; MITCHELL, DUPUIS, KONTOS, JONAS-SIMPSON & GRAY, 2020). Collective Disruption is dedicated to challenging misconceptions and injustices through the arts, with a specific interest in challenging the tragedy discourse of dementia and considering its implications for stigmatizing persons living with dementia. We turned to theater as a way to imaginatively explore new understandings of dementia and people living with it, and to open up a cultural and social space for a wide range of audience members to become aesthetically engaged with, and critically reflect on, experiences and assumptions within social/cultural/historical/political contexts. [2]

In discussing methodology, we intend to consider the interrelationship among cultural narratives (including the perpetuation of oppressive narratives of marginalized people), artistic and aesthetic exploration (sensory and emotional exploration together with dramaturgy and theatricality), and social critique for the purposes of broader social change. Indeed, this interrelationship is precisely why we chose theater as our medium to engage audience members in conversation about the tragedy discourse of dementia (GRAY, KONTOS, DUPUIS, MITCHELL, & JONAS-SIMPSON, 2017; MITCHELL, DUPUIS & KONTOS, 2013). Given the oppressive, tragic cultural narratives about people living with dementia and the implications of those assumptions for the crafting and execution of long-term care practices and policy, we sought to create a space through theater for audience members to critically and aesthetically reconsider their own taken for granted beliefs about dementia. We worked from the assumption that in order to change actions, we needed to create a space for people to consider not only what they think about dementia, but also what they feel and sense about it, and how those thoughts-feelings-senses translate into actions (GRAY, 2019; GRAY & KONTOS, 2018). As a team, we engaged in our performance process about dementia in order to "break with what is supposedly fixed and finished" (GREENE, 2001, p.19), so that "we can read the struggles and debates back into questions that seem settled and resolved" (HALBERSTAM, 2011, p.11). This breaking with the fixed and re-reading struggles into questions involved overturning assumptions that persons with dementia can only ever be tragic shells of their former selves, and envisioning new possibilities for being and relating. This was something we undertook as a team throughout our exploratory process in order to invite audience members into similar exploration through the performance event itself. Put another way, we engaged in an artistic and aesthetic exploration process in order to elucidate social experiences of dementia with the intention of overturning ageist cultural assumptions and prompting personal and social change. [3]

Following this, our aim with this article is not to draw on a particular scientific methodological framework as part of discussing the development and execution of our study design, nor do we report on empirical findings. Rather, we explore how our project uniquely intersects the social sciences (i.e., critical arts-based research) and the arts and humanities (i.e., research-creation). This exploration highlights how this intersection gave rise to our unique theater creation, which itself was a process of embodied, imaginative, and foolish knowledge production. It further highlights how final performances provided spaces for audience members to also engage in this knowledge production regarding the tragedy discourse of dementia. We describe how we drew on qualitative approaches in concert with a theater process as a kind of "research scaffolding," or as a flexible plan or "an open methodological design that both provide[d] support and possibility" to move Cracked forward (BERBARY & BOLES, 2014, 403). Following BERBARY and BOLES, we aimed through our process "to step away from prescribed methodology and move on towards more fluid, improvisational inquiries" (p.417). [4]

Through this article, we consider the ways in which our creative-research team drew on dramaturgy and theatricality, as the use of both the structures of dramatic composition and also theatrical form and technique (what happens on stage), as a vital part of our process in tension with what "comes from the heart" about dementia (MAMET, 1998, p.21). Here we heed renowned American playwright David MAMET's proclamation that it is through the play's structure and form (i.e., dramaturgy) that audience members have the opportunity to sit in relation to the action of the play, or what the characters are doing. While MAMET has controversially claimed that any art with a social agenda will ultimately debilitate and oppress (which we would disagree with!), we draw on MAMET's advocacy to help us think through the ways that dramatic structure and the characters' journeys are transformative, as well as engaging from "the heart." This can help us consider the power of theater as an important medium for reconsidering dominant cultural narratives, engaging in aesthetic and artistic exploration, and opening up social critique. In this way, we were not attempting to fix dementia as a problem, but to "inspire ... awe" (p.69) about how the possibilities and potential of persons living with dementia are not yet considered. As we argue, while our social agenda fueled the impetus for creating the play, it was our knowledge of dramaturgy and theatricality as well as our emotional, sensory, and spontaneous engagement with stories told to us by persons living with dementia, that helped us craft and shape the play. Ultimately, our interest was to invite audience members into the journey of the story to experience alongside it—or even imaginatively place themselves within it—in order to reflect and attend to their own assumptions about dementia with the possibility for change (MITCHELL et al., 2011; THOMPSON, 2011). [5]

Our paper will unfold in the following way: First we will provide background about the impetus for creating Cracked and a brief overview of the play's plot; second, drawing from applied theater practitioner-scholar THOMPSON's work on an aesthetics of care, we will provide insight into three "acts" of our play's development: "preparation, execution and exhibition" (2015, p.437); finally we conclude by considering the ways our process challenges traditional understandings of knowledge and knowledge production, and advocate for the academy's receptivity to recognizing exploration and inquiry beyond the scientific research apparatus. [6]

2. Background—Cracked: New Light on Dementia

Cracked: New Light on Dementia is a research-informed play that was initiated by four members of our team, health and social researchers Drs. Sherry DUPUIS, Gail MITCHELL, Pia KONTOS, and Christine JONAS-SIMPSON, all of whom specialize in the areas of aging, dementia, and research-informed performance (both live theater and/or film). With an interest to draw on the strengths of theatricality, this group collaborated with playwright, theater director and artist-researcher Dr. Julia GRAY, who specializes in socially-based theater and performance projects.2) As a team, we shared common interest to challenge the discourse of tragedy and loss that is dominant regarding dementia, and more specifically the dehumanizing care practices that result from these tragic assumptions and that are prevalent in so many residential and community care settings (MITCHELL et al., 2013). We collaboratively developed Cracked with a group of actors including Susan APPLEWHAITE, Lori Nancy KALAMANSKI, Tim MACHIN, Mary Ellen MACLEAN, Claire Frances MUIR, Mark PRINCE and Jerrald KARCH 3), based on stories told to us by persons living with dementia and their family members as well as healthcare professionals working in dementia and/or long-term care. We have worked and lived with people with dementia across our lives, professionally and personally, we come from across Canada, including urban and rural areas, and identify with a range of communities and generations of difference; as mentioned earlier, we call our creative-research ensemble Collective Disruption. [7]

Through our process for Cracked, we aimed to elucidate the vital importance of relationships and humanity as part of dementia experiences, including dementia care, and the significance of attending to the varied and dynamic ways that memories are embodied and expressed. Our "theatrical devising" process involved a collaborative, improvised creative process among those working in-studio (BARTON & WELLS, 2008; FILEWOD, 1987; HARRIS & JONES, 2016; MITCHELL, 2009). Throughout our process, we continued to invite community members at specific points for feedback, idea-generation and on-going discussion, including persons living with dementia and their family members. As an example, early in our process we held a full-day arts-based workshop which involved members of Collective Disruption, as well as several visual artists coming together with people living with dementia and their family members. We worked together to interrogate the tragedy discourse as well as to imagine and build alternative visual representations based on the lived experiences of people living with dementia (DUPUIS, KONTOS, MITCHELL, JONAS-SIMPSON & GRAY, 2016). For additional information, please see our team's publications about Cracked, including our published script and the film version4) (COLLECTIVE DISRUPTION, 2017; GRANI & GRAY, 2018; GRAY et al., 2017; KONTOS et al., 2018). [8]

Cracked follows the story-lines of two characters who live with dementia: Elaine Carter and Vera Nolan. As the play progresses, Elaine's journey unfolds with her two adult children—the play opens with Elaine's diagnosis and follows her to her move into long-term care, including the family's changing relationships. While Elaine is at first unsure of her diagnosis, she becomes increasingly engaged in her community, including reconnecting with her long-time friend Vera who she learns has also been diagnosed with dementia. This rekindled friendship sparks Elaine to become politically active and an advocate for persons with dementia alongside a new group of friends. A space opens in a long-term care home, and Elaine and her family are faced with the very difficult and rushed decision to move her into this home.5) In the new home, again Elaine's world expands as she meets new people and makes new friends. Elaine's daughter Caroline struggles with many of her own assumptions about her mother's experiences of dementia; by the play's end, Caroline is learning ways of relating with her mother, and spontaneously invites her mother to dance. As the second protagonist, Vera works through changes in her relationship with her husband Tom. At the play's mid-point, Tom realizes he is no longer able to care for Vera, and she also moves into a long-term care home. In long-term care, Vera progresses further on her dementia journey; by the end of the play Vera's history and life experiences are explored through a dynamic and vibrant scene, sharing her sensuous and embodied memories of dancing, singing, joy, and fear. With both Elaine's and Vera's stories, characters move fluidly from being their younger selves to their older selves through the actors changed postures, vocal qualities, gestures and movements. Audience members witness the ways both characters living with dementia grow and learn, as well as those around them, not only despite the disease, but also because of it. [9]

Without diminishing the overlapping and fluid nature of our process, for the purposes of this article we organize our process into three acts: 1. preparation, 2. execution, and 3. exhibition (THOMPSON, 2015). Through these three acts of our process for Cracked, we aimed to be both relationally and aesthetically accountable in that we prized strong relationships to multiple factors and people as central to our process, and were simultaneously attentive to shape and form, with sensitivity, openness and feeling (GRAY, 2019; GRAY & KONTOS, 2018; THOMPSON, 2015). In what follows, we describe each act and provide examples of the ways we engaged aesthetically and drew on the structures of theatricality and dramaturgy, in order "to inspire awe" for our audiences about experiences of dementia. [10]

3. Acts of Our Process for Cracked

3.1 Act 1: Preparation

Building on the work of THOMPSON (2015), the act of preparation involved "an openness and honesty of intention, the selection of artists or participants and questions of the location of [the] project" (pp.437-438). For over a year, we, including health researchers DUPUIS, MITCHELL, KONTOS, and JONAS-SIMPSON and artist-researcher GRAY, met monthly to discuss our collective concern about the tragedy discourse and the implications of this dominant discourse for current practices and ways of relating. We shared stories from our personal and professional experiences, and re-analyzed data from a number of previous research projects we had each conducted independently and collectively. We identified and deeply discussed concepts that we felt were important to our process, specifically relationality (e.g., DUPUIS et al., 2018; DUPUIS, WIERSMA & LOISELLE, 2012; JORDAN, WALKER & HARTLING, 2004; KONTOS, MILLER & KONTOS, 2017; NOLAN, DAVIES & BROWN, 2006; NOLAN, RYAN, ENDERBY & REID, 2002), embodied selfhood (e.g., KONTOS, 2005, 2012; KONTOS & MARTIN, 2013), and knowing other-wise (OLTHIUS, 1997). Together we explored the range of ways a play might provide a space to invite audience members into conversation about ableist assumptions of dementia, and support personal and social change. [11]

Throughout our entire process, we met several times with persons living with dementia and their family members; however, in Act 1: Preparation we invited both groups to engage with us in focus groups to discuss the relationships in their lives, as well as their meanings, and what it was that made life worth living for them.6) We found the differences between these two groups striking and identified a number of tensions between the described experiences. We found that persons with dementia had a very deep, relational understanding of life and living. They purposely sought out connection and inclusion as they were interested to be with other people, to be supported by others, and also to support; they found joy, meaning and humor in the moment, in the presence of others, and in being in positive spaces. They spoke about letting go, new found freedom, and new possibilities that had emerged for them that they associated with their diagnoses. They also reflected a broader understanding of relationality beyond human relationships. For example, they described their complicated relationships with time, and about letting go and the freedom that provided. [12]

However, many family members in these focus groups expressed frustrations and anger as they struggled to make sense of their new lives with dementia They felt great sadness and loss due to their family member living with dementia, overwhelmed by the many tasks they felt were associated with caring for their family member, and unsupported by a system that was meant to help them. They spoke about disconnection and distancing, their struggles to maintain control, and the restrictions and the narrowing of life they were experiencing because of their circumstances. Hearing how unsupported these family members felt by broader social and health systems, including practices embedded within them, led us to an examination and documentation of what we called absurdities in practice. We understood these absurdities as taken-for-granted and in-humane care practices and social policies in aged and dementia care, both in community settings and in long-term care, that constitute forms of "structural violence" (BANERJEE et al., 2012), marginalizing, exploiting, and oppressing persons living with dementia and their formal and informal care partners. We re-analyzed data from other projects with a "structural violence" lens to identify specific examples of these absurdities and also reached out to professionals working in diverse aged and dementia care settings and asked them to provide additional examples. [13]

Both of these approaches, specifically meetings where we discussed absurdities and concepts including the tragedy discourse of dementia, as well as the collection of new stories, informed our theatrical and aesthetic exploration. Towards the end of Act 1: Preparation we brought seven actors on board as part of our ensemble. Here we were interested to work with actors who would engage in our exploratory theatrical devising process with us, and consider the ways the tragedy discourse of dementia is implicated within our lives since this theatrical devising process was so central to our approach to crafting a production that would interrogate those cultural assumptions. [14]

3.2 Act 2: Execution

In the second act, execution, our work shifted to in-studio collaboration, centered on embodied, imaginative and foolish exploration (GRAY, 2019; GRAY & KONTOS, 2018). Our aesthetic exploration of stories of dementia, as told to us by persons living with dementia and their family members through the focus group transcripts and other research we conducted collaboratively and independently, as well as our own personal stories and experiences, invited a co-mingling that focused on "shape, feel, sensation and affect" (THOMPSON, 2015, p.438). This meant that our ensemble's aesthetic and embodied understanding of the material, and the shape and structure of the play, were not driven or focused by one particular person or artist, but rather "appear[ed] in-between those involved, so that there [was] a sensory quality of the process and outcome that [was not] disaggregated from the collective effort" (ibid.). [15]

This execution process involved our entire ensemble—artists and health researchers—courageously embracing foolishness (SALVERSON, 2006, 2008) and building a collaborative space of play by engaging in theatrical exercises. The foolishness of our approach cannot be understated; we aimed to be playful and vulnerable, engaging with "a willingness to fail and step forward with uncertainty" (GRAY, 2019). By creating this safe playful space, we allowed ourselves to face our own misconceptions and assumptions about dementia, and to imagine the experiences in the stories told to us. It was by playing and experimenting, by being joyful and vulnerable, that we built a deep sense of trust with each other. This allowed us to look closely at, and experience differently, some of our own underlying and invisible assumptions, while resisting the pressure to move too quickly to a finished production. This process also allowed us to create a space where new understandings of dementia, through play, could be explored. [16]

As an example of our theatrical exploration, we engaged in an improvisation process called "rounds" which was shared by ensemble member Mary Ellen MACLEAN.7) Rounds can be divided into two separate phases: "open rounds" and "directed rounds."8) Open rounds are a practice where the group is arranged into a semi-circle (on the ground or in chairs, etc., as appropriate). Starting at one end of the semi-circle each person gets up in front of everyone and gestures in some way for approximately five seconds (e.g., a movement, a vocal expression, etc.), prior to returning to their original place in the semi-circle to make way for the next person. This practice is repeated and repeated, again and again (you go around and around!), with new gestures each time. Generally the gestures in open rounds appear to make no sense and are often abstract, as the emphasis with this practice is not to think or be clever, but rather to gesture from a place of feeling (or foolishness). The intention is to link movement or gestures with spontaneous impulses of desire, emotion/feeling and surprise, including sadness, joy, frustration, anger, elation, love among many others. Theatrical skill or technique is not central to this exploratory open rounds process. [17]

As the act of gesturing is repeated by each member of the group as part of open rounds, attempting to do new non-thinking or foolish (impulsive) gestures, each individual's own embodiment is exposed, including individual patterns and physical habits. A relational engagement occurs among group members, as all individuals attend to their own embodiment through the repeated process of gesturing, as well as witnessing and exploring the gestures and embodiment of others. [18]

As open rounds progressed over several days, they eventually became more focused or directed which involved more thinking without moving into the cleverness of writing or crafting the script/production. This meant that on a particular person's turn, they would bring one or more persons in front of the group with them to try a particular idea that was slightly more organized without losing the playful experimentation of open rounds. For example, an individual might invite two people to join them and ask them to create a particular image together with their bodies, or improvise a short scene. We understood that these directed rounds were akin to tiny sketches: still very rough, but with a bit more thought behind them than the open rounds, which were exclusively foolish. With both open rounds and directed rounds, we were working to "playfully extend" towards experiences and stories of other people, including persons living with dementia and each other, without the attempt to know in any definitive way. Through playful extending, we also each became "foolishly disrupted" in that through our brave, vulnerable engagement, assumptions and ways of being became exposed, opening up space for new possibilities (GRAY & KONTOS, 2018). [19]

Actors had also been given excerpts from the focus group transcripts that were conducted in Act 1: Preparation, which they read and had on-hand during the studio work in Act 2: Execution. At this point, we started to bring these transcript excerpts into our creative work in a more organized way, allowing those stories to inform our improvisations. For example, we experimented with using some of the language from the transcripts as part of our improvisations. We would often use the phrase "half baked" with each other to remind ourselves that we remained playful in our work and accepted that most of these early improvisations would be ridiculous and fail. However, many improvisations were also physically eloquent and emotionally resonant, with depth and beauty. Our focus remained on working as an ensemble, exploring our own gestures and bodies with each other, and exploring many stories including those of persons living with dementia, their family care partners, healthcare professionals, and our own. [20]

As an example of a more directed round, one of the actors brought forward an improvisation where a health care provider sat in a chair in the center of the playing/performing area and two other actors were circling around her. They spoke in overly serious voices and moved in overly dramatic ways, turning suddenly, pointing dramatically and lifting their chins in righteous indignation. Their actions were (very badly) spoofing the film noir style of filmmaking and acting. As the two actors moved around the seated actor, they questioned her about the way she was caring for a person living with dementia as they might in a film noir interrogation scene—"ha HA! You DID call her sweetie!" This sketch, which took under two minutes, emerged out of discussions we had about how health care providers are discouraged and even reprimanded for building relationships with people living with dementia in long-term care. It exposed and playfully poked fun at some of the absurdities in practice that we had generated and discussed earlier in our process. [21]

First author and playwright GRAY documented many of the rounds in her notebooks, and would take time away from the in-studio work to begin to draw some ideas and images on cue-cards.9) The cue-cards were helpful because as we started to string together a storyline, GRAY could move the cue-cards around to experiment with the order of different scenes or ideas within in the play. GRAY also began to write some monologues and scenes independently, based on the team's research transcripts as well as stories people had shared. GRAY would bring these scenes and monologues into the studio to work with actors and the researchers to hear how the stories sounded and to receive feedback. [22]

Music also played prominently in our process. Many of our ensemble were singers and musicians, and our music director, Tim MACHIN, led the ensemble on several music exercises; we learned several songs together and experimented with percussion. This allowed him to hear what people's musical strengths were, and allowed us to play and experiment together as an ensemble in a different way by playing with sound and rhythm. [23]

Parallel to this in-studio time during Act 2: Execution, we also had the opportunity to meet as an ensemble with persons living with dementia. We did this to ensure that each member of our team, including researchers and actors, had the opportunity to meet and interact with persons with dementia and their formal and informal care providers, which we could then discuss together as a team. These meetings happened in two ways. First, we visited a long-term care home in Toronto and spent time there with persons living with dementia. We had the opportunity to join persons living with dementia in some of their programs and also for refreshments and conversation. We were able to chat with them about their interests, and also to observe the team members who cared for them. During Act 2: Execution, we additionally held an arts-based workshop with visual artists, persons with dementia and their family members described earlier (DUPUIS et al., 2016). [24]

3.3 Act 3: Exhibition

As part of the third act of exhibition, we continued to work to be both aesthetically and relationally accountable, which involved works-in-progress presentations and final performances. In this way, exhibition involved expanding beyond our ensemble to share our in-progress material with invited guests as a kind of ethical engagement to ensure resonance (DE WITT & PLOEG, 2006). In Act 2: Execution, we had begun to form together some of the experimental imagery, scenes and music we generated into larger scenes, including from what were created through rounds and directed rounds. In Act 3: Exhibition, we reached a point creatively where we felt it would be useful to share these larger scenes with audience members to explore what would resonate with them. We invited a range of people to these in-progress presentations so we could receive feedback from different perspectives, including individuals living with dementia, family members, professionals working in dementia care, other researchers, and individuals more engaged in the art-theater world. We used the feedback from these works-in-progress presentations to inform our on-going creative process. [25]

Several works-in-progress presentations took place where we noted audience members' attention, emotion and discomfort as they watched and responded to what were initially vignettes, and which later became larger scenes, and then the full play. Audience members were assumed to be active participants in the co-construction of the performance; each audience member brought to the performance a particular awareness that comes with unique life experiences, and potentially differing expectations for attendance (THOMPSON, 2015, see also GRAY, Forthcoming; JACKSON, 2011). As part of our process, we did not assume to know how audience members would engage during the performance event itself; rather we aimed to provide an open-ended experience for them, and imagined that they might "playfully extend" towards the performance event itself (GRAY, Forthcoming; GRAY & KONTOS, 2018). Works-in-progress presentations provided the opportunity for our ensemble to gauge the ways audience members responded to particular moments, images, scenes, as well as how they may or may not be "foolishly disrupted" by these moments (GRAY & KONTOS, 2018). [26]

Some members of our team had conducted previous research that indicated the ways audience members feel and respond to theatrical performances (MITCHELL et al., 2011). For example, this past research highlighted the importance of emotional and bodily responses to theater in order to prompt personal and social change. This work also highlighted the importance of audience members being able to place themselves in and relate to the action of the play, to see themselves "right inside" it (p.385); the story being told needed to feel "real" for this to happen. With this in mind, we understood that we needed to ensure that our in-studio artistic and aesthetic exploration process as foundational to our play's creation was resonating with some of the very people we wished to engage long-term. This opportunity, to relationally and aesthetically engage with the generated theatrical material alongside audience members, deeply informed our on-going process. [27]

Before our first works-in-progress presentation, we had met in-studio as a full ensemble of researchers and actors twice to engage in aesthetic and artistic exploration, each time for ten days. Our first works-in-progress presentation involved presenting a series of in-progress vignettes and short scenes—most of which did not string together in any cohesive way. We had created some preliminary "sketches" of particular characters, but there was no consistent story-line. We presented a handful of these, which we had developed from the directed rounds, as well as two songs. There were many things we worked on that we did not present, and several things we worked on that we were considering using in the play, but did not share them as they were too raw or too unformed at that time. We gave each invited guest a reflection sheet where they could make notes as they witnessed the scenes. After the presentation, we invited audience members to discuss with us their experiences of engaging with what they had seen, what was resonating with their experiences, what they were surprised by, and what they were concerned about. We explored with audience members what it was about what they were seeing and hearing that prompted the reactions they were describing. [28]

GRAY took the feedback away from this works-in-progress presentation and selected material to continue to work on. She consulted with the health researchers and actors about their thoughts and impressions from the works-in-progress presentation. She additionally continued to write new scenes, and reflected on what was missing from the presented material that we had discussed in Act 1: Preparation, in our initial team meetings. [29]

With this feedback and reflection time, we met as an ensemble again and engaged in a similar process as in Act 2: Execution. We used rounds and GRAY's written material to continue to experiment with particular characters, images and ideas. We continued to hold works-in-progress presentations after some of our in-studio creative phases; there were three works-in-progress presentations in total. Additionally, with each creative in-studio phase, the researchers began to engage with the creative work differently. Their involvement shifted from jointly exploring the stories of persons living with dementia theatrically with the actors, to providing dramaturgical support to GRAY and helping to refine the script. [30]

With each creative in-studio phase, and with each subsequent presentation, the play became more and more refined. Throughout this refinement, we worked to attune to several factors: 1. to the original stories told to us, 2. our interests to critique the tragedy discourse and expose in-humane and unjust practices and policies, 3. our relationship as an ensemble, and 4. the ways the theatrical work was or was not resonating with audience members. Here our knowledge of dramaturgy and theatricality were important tools to refine our storytelling and we worked to harness these tools cleverly; we aimed to craft a theatrical production that would provide opportunity for audience members to sit in relation to the action of the play, or what the characters were doing, in order to critically and aesthetically experience the tragedy discourse of dementia differently (MITCHELL et al., 2011). This cleverness, or the careful use of dramaturgy and theatricality, was engaged while also staying rooted to the foolishness, vulnerability and playfulness (or what "comes from the heart") that was fundamental to the original stories and our aesthetic exploration in Act 2: Execution as an ensemble. [31]

As an example of the ways we drew on theatricality and dramaturgy, we return to the example of the spoof film noir scene that was improvised as part of directed rounds in Act 2: Execution. As a reminder, during this improvised scene two actors circled around a third seated actor, questioning her with overly-dramatic vocal intonations and movements about the way she was caring for a person living with dementia as they might in a film noir interrogation scene. To put this scene in context, we additionally provide insights into some of our broader dramaturgical decision-making, including the use of dramatic and post-dramatic approaches. While we draw on the spoof film noir scene to highlight our use of dramaturgy and theatricality to engage audience members with our theoretical work around the absurdities in practice, our aim in providing this broader context is to emphasize the ways the entire play was an interconnected theatrical production. The spoof film noir scene was not performed in isolation; rather we drew on multiple modes of theatricality to carefully craft particular, shifting stage action—audience relationships as part of engaging audiences aesthetically, creatively and critically. [32]

In developing the play's overall structure, GRAY centered the arc of the play on two main characters living with dementia, Elaine Carter and Vera Nolan. The play opens with a scene between a young teenaged Elaine with her father and brother, who are lobster fishing together off the coast of Nova Scotia.10) This scene ends abruptly upon the discovery of Elaine by a nurse in the hallway of a long-term care home; audience members too discover Elaine is not a teenager, but a person with dementia living in long-term care who is enacting her memories of her youth as if she were in that moment/memory itself. This dramatic scene quickly shifts to a short disruptive array of music and movement, where actors sing in harmony ("Official Time Signal" and "1,2,3,4,5,6,7" both composed by MACHIN), and move in lines across the stage as pendulums in a clock, with movements becoming increasingly fragmented and disjointed as the sequence continues (see our published script for details, COLLECTIVE DISRUPTION, 2017). This array takes on a post-dramatic quality in that the emphasis of the performance moves away from a linear dramatic narrative towards a newly-constructed relationship between performers and audience members by providing "an intentionally unmediated experience of the real (time, space, body)" and a less logical form more akin to performance art (LEHMANN, 2006 [1999], p.134). In this way, we aimed to re-orient the stage-action away from the traditions of the dramatic, where audience members might feel comfortable expecting particular tropes and/or emotional, cathartic triggers, and remind audience members early in the performance event that they were an integral part of meaning-making, and would be invited to engage with the performance in a variety of ways. [33]

As the play continues, Elaine and Vera meet, and Vera introduces Elaine to a re-conception of dementia that is full and active. As both characters move further into their dementia journey, away from a more linear and cerebrally-logical being-in-the-world, the structure of the play becomes more fragmented and scenes take on a less-linear continuity. By the time Elaine moves into a long-term care home, there is a sequence of short scenes that each stand on their own without obvious logical continuity. The structural focus moves to being-in-the-moment of the scene itself, with traces of what has come before, without reliance on linearity and dramatic narrative. Given the dramaturgical structure of the play to that point, with both dramatic and post-dramatic influences, audience members have been receptive to this sequencing. [34]

As part of the sequence of short scenes within the long-term care home, GRAY felt that the early improvised film noir scene would ideally introduce audience members to the absurdities in practice that we explored and discussed as a team in Act 1: Preparation and aesthetically explored in Act 2: Execution. As part of this, GRAY hinged this interrogation scene to follow a scene where Elaine joins her fellow residents for a meal in the long-term care home dining hall. A full analysis of the ways these two juxtaposed scenes open up thinking about long-term care policy has been discussed elsewhere (GRAY et al., 2017); we provide a brief description of the scenes below for contextual purposes. [35]

At the play's mid-point the dramatic action moves into long-term care with the dining scene, where Elaine enters the performance space along with other residents living in the home (COLLECTIVE DISRUPTION, 2017, pp.112-117). As residents sit and pull themselves up to (imaginary and mimed) tables, they are joined by Jim, who works in the home. Each character with dementia is performed uniquely; they are playful, cheeky, flirtatious, agile, physically-limited, musical, spiritual, shy, outgoing, scornful, frustrated, among a range of other qualities. The scene includes a community of people living with their differences, supporting, teasing, flirting with and testing each other, as well as getting under each other's skin. No one is an empty shell of their former self as might be assumed within the tragedy discourse; rather each is a relational human-being, gesturing and expressing themselves, and relating to each other uniquely in the present moment. As the team member working in the home, Jim understands and supports each resident's patterns and needs, knowing who prefers coffee or tea, creating space for residents to help each other and him, as Elaine does when she follows Jim to retrieve the butter from the kitchen. But this community of persons with dementia is performed in great part through their gestures: Sarah lightly saunters towards her seat, while she hums and fiddles with her scarf, Elaine extends her arm to help Silas as he edges his way from the table to his seat, Henry's eyes twinkle as he flirts with Esme who shines with the attention, Dorothy gently and daintily adjusts her pearls at her neck. These gestures are the ways members of this community engage with each other, and the ways audience members come to engage with the characters and the story. [36]

The dining scene comes to an abrupt end when Jim approaches Elaine, who is "hogging all the butter" (according to Silas) by over-generously slathering it on her bun, and interrupts her with a gentle "now, sweetie ..." The entire ensemble starkly turns to Jim with a unanimous gasp (and some clutch their pearls!). Chairs are thrust back, as "residents in disguise" leap to their feet, clearing the stage like roaches scattering across a floor. All that is left is a single chair center stage, where Jim is planted. Two former residents in disguise now loom as interrogators, and begin circling the unsuspecting Jim. Throughout the following scene of the interrogation, persons living with dementia are merely mentioned in the abstract ("the resident"), cast in the shadow of The Interrogators more concerned with avoiding the wrath of the compliance officer in the form of a citation over maintaining relationships and supporting people living fully. By situating the dining scene and the interrogation in sequence, and with an abrupt shift between them, the policy that the Interrogators are attempting to enforce is exposed as absurd. The Interrogators themselves are performed absurdly in their buffoonish gestures, their exaggerated walking style, and their over-exerted passion about the imposition of policy regulation; alongside this, policy itself additionally becomes exposed as absurd. [37]

In final performances, audience members have responded with delight and laughter at seeing the absurdities of over-controlling language when engaging with residents in long-term care in a new way. Many audience members have commented during talk-back sessions following performances on that specific scene, recognizing "the language police," similarities between the absurdities being portrayed and practices and policies within their own dementia care settings, and how it prompted them to commit to shifting their practice from an exclusive focus on avoiding citations, to more relational caring. After engaging with one of our final performances, one audience member wrote on a reflection sheet: "Powerful! Emotional!! Love, amazing interaction, thought provoking. Makes you want to ensure that change isn't just thought about, but becomes a reality not sometime in the future. Starting NOW!"11) [38]

4. Conclusion

Exploring this specific performance-research project forwards understandings of the ways artistic and scientific processes work in conversation. Akin to critical arts-based research, our project had an overt social justice agenda in that we aimed to challenge the tragedy discourse of dementia and invite audiences to re-vision dementia as filled with possibilities, and to help to better the world for people living with dementia. Our aim was to be "deliberately transformative" and to inspire people to both reflect and move to action, to "change our social interactions" (FINLAY, 2014, p.531). However, moving beyond an un-critical "aesthetic of objectivity" (DENZIN, 2003, p.72) where it is assumed scientific research findings will be linearly translated into a performance for audience access (see also GRAY & KONTOS, 2015; MINH-HA, 1993; SNYDER-YOUNG, 2010), we additionally align our work with an arts-humanities-oriented "research-creation" in that we generated new knowledge through artistic processes (as aesthetic exploration and drawing on dramaturgy and theatricality to shape the production), including resultant insights and understandings. Our experiences of creatively engaging or playing with data, as "embodied enactment," alongside critical reflection, became an integral knowledge generation process as part of the development of Cracked (LINDS, 2006). It is through this research-creation process that we all came to see how we are all "cracked" in some way and it is through our cracks that new possibilities become viable. [39]

Audience members became sensorily, emotionally, and critically engaged with the absurdities in practice through the interrogation scene, which we suggest occurred in part because we produced a different kind of cultural narrative beyond the tragic about dementia and care practices. We produced this new cultural narrative in relationship to our aesthetic exploration, where we engaged foolishly, playfully, and "from the heart" about dementia and stories told about it. During talk-back sessions, audience members began to draw a trajectory towards a new kind of social engagement beyond the performance event itself. We suggest that they voiced how they would reconsider their own policies and practices because of this cultural narrative—aesthetic exploration relationship. Indeed, research we conducted after final performances through surveys distributed to audience members supports this; our analysis indicated that Cracked supported audience members to shift assumptions and stigma by: decreasing health care practitioners' and family members' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma (KONTOS et al., 2018). Through the theatrical production, audience members were provided a social and cultural space to consider not only what they thought about dementia, but also what they felt and sensed about it, and how those thoughts-feelings-senses might translate into new actions and ways of being and relating with persons with dementia. [40]

Collective Disruption joins a growing body of researchers who are working within a newly emerging arts research paradigm, where "qualitative and artistic practice are not [considered] as disparate ... [but] can be used in service of each other" (LEAVY, 2018, p.8). While we used qualitative approaches to support some of the project's queries, we were not strictly beholden to the traditions of the scientific research apparatus surrounding knowledge production (such as research questions, methodological design and structure, and dissemination plans). Rather, we used artistic practices flexibly to generate new cultural knowledge about the ways we think, feel and sense about dementia to be mobilized for social good. This article about our process thus stands as a critique of institutional and research structures that deny arts processes the status of "research," as well as challenging traditional modes of knowledge and knowledge production (see for example DENZIN, 2017; GERBER et al, 2020; GRAY & KONTOS, 2018; LOVELESS, 2015; MANNING, 2016). Our work provides an important example of the ways that embodied, imagined, sensed and felt knowledge can be produced as part of moving towards broader social change, which works against the commodification of knowledge and the dominance of predictable and measurable research processes that are prioritized as part of the neoliberal academy (GRAY & KONTOS, 2019). We offer this description of our process to inspire more research-creation partnerships and projects in the future. [41]


The development of Cracked: New Light on Dementia was made possible with a Canadian Institutes for Health Research Knowledge Supplement Grant. Julia GRAY was supported by a Social Science and Humanities Research Council of Canada Postdoctoral Fellowship at the time of writing this article; Matching funds were from The Kimel Family Opportunities Fund through the Holland Bloorview Kids Rehabilitation Hospital Foundation.


1) Parallel terms to "research-creation" include practice-based research, practice-led research and artistic research, which find their origins mostly in Western and Northern Europe and Australia. As a Canadian team, we use "research-creation" as the main Canadian term to speak about the arts-research nexus within the arts and humanities. <back>

2) Please note that throughout this article we write about ourselves as a team in the first person; however, when discussing work or processes of a particular individual within the team, we discuss that person's work and actions in the third person. <back>

3) Part way through our process Jerrald KARCH left our ensemble and was replaced by David TALBOT, and in later performances Dov MICHELSON and Alan SAPP. Additionally, after our first performances, Mark PRINCE left our ensemble and we were joined by several different actors including Jason CHESWORTH, Mark HUISMAN and Andy POGSON over the course of the remaining performances. All of our ensemble members brought insights to our process. <back>

4) In 2017, with funds from The Waugh Family Foundation, we filmed three live performances of Crackedwhich was edited into a film version (GRANI & GRAY, 2018). In January 2018, the film premiered at the Hot Docs Ted Rogers Cinema in Toronto, Canada, and is currently housed on our website http://www.crackedondementia.ca/ [Accessed: July 31, 2020]. <back>

5) In the province of Ontario, Canada, where Cracked takes place, when a space becomes available one must make a decision and accept a spot in long-term care in a very short time frame, usually 24 hours. <back>

6) Ethics approval was obtained from the research ethics board at the University of Waterloo (ORE-17707). Aligned with our fluid, improvisational approach to the project more broadly, we also modified and sought amendments to our ethics approval throughout the process. <back>

7) Mary Ellen MACLEAN worked and toured with Jest in Time Theatre for twenty years, which was located in Halifax, Nova Scotia, Canada. The quartet of Jest in Time achieved international acclaim touring their original style of physical theater across Canada, the United States, Hong Kong, Japan and Australia where they played at the Sydney Opera House. Jest in Time also created and starred in three national television specials for the Canadian Broadcasting Corporation. As part of her work with Jest in Time, MACLEAN studied with master mime/teacher Tony MONTANARO, at his Celebration Barn Theatre in South Paris, Maine, USA (MONTANARO & MONTANARO, 1995). The training focused on mime, character work, movement, physical theater, theater-creation with a particular focus on ensemble work as well as developing one's own style of theater; this training also included the improvisational exercise "rounds." Our interest here is to recognize the particular physical theater lineage that was passed from Mr. MONTANARO to MACLEAN through practice, which she brought to our process for Cracked. <back>

8) We would like to thank artist-researcher MACLEAN for her assistance with this section about open rounds and directed rounds. <back>

9) First author, Julia GRAY, was also the primary playwright and director for Cracked; in addition to bringing her skills as a text-based playwright, GRAY also had a history of training and working within traditions of European modern dance, including GRAHAM and LIMÓN techniques, as well as training with Cuban image-based theater company Grupo Teatro Escambray (RUDAKOFF, 1996). These practice-based traditions heavily influenced our creative process and the final production for Cracked—this is most explicit in the section of our paper Act 3: Exhibition. <back>

10) Nova Scotia is one of Canada's eastern provinces, where the fishing industry plays an important historical, economic and cultural role. <back>

11) Following all live performances of Cracked, we offered audience members an opportunity to share their experiences engaging with the play and to ask questions of the researchers and actors. Readers can find videos of examples of some of our Q&A's and the interactions between audience members and members of Collective Disruption through this link: http://crackedondementia.ca/engage/ [Accessed: July 29, 2020]. <back>

12) Corresponding author <back>


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Julia GRAY12) is a playwright, theater director, arts-facilitator and scholar-researcher. She recently completed a postdoctoral fellowship at Bloorview Research Institute, fully affiliated with University of Toronto's Faculty of Medicine, in Toronto, Canada. Her program of research crosses the arts, humanities, critical social sciences and health sciences to elucidate social experiences and overturn cultural assumptions of aging and disability.


Julia Gray

Visiting Scholar

Sensorium: Centre for Digital Arts & Technology
York University

The School of Arts, Media, Performance & Design
c/o Department of Theatre
321 Centre for Film and Theatre
4700 Keele St.
Toronto, ON, Canada M3J 1P3

E-Mail: juliagray@possiblearts.ca
URL: http://www.possiblearts.ca/


Sherry DUPUIS is a professor in the Department of Recreation and Leisure Studies and the co-director of the Partnerships in Dementia Care Alliance at the University of Waterloo, in Canada. Informed by over 30 years of professional and research experience working with persons with dementia and their care partners, in her research program, Dr. DUPUIS uses participatory and arts-based research approaches as a means of promoting culture change in dementia care.


Sherry L. Dupuis

Faculty of Applied Health Sciences
University of Waterloo
200 University Avenue West
Waterloo, Ontario, Canada N2L 3G1

E-mail: sldupuis@uwaterloo.ca


Pia KONTOS is a senior scientist at the KITE-Toronto Rehabilitation Institute, University Health Network, and associate professor in the Dalla Lana School of Public Health at the University of Toronto. In her research she focuses on structural and relational vulnerability to stigma associated with dementia in the context of community-based and institutional care settings, and the development and evaluation of arts-based initiatives to support ethical care relationships.


Pia Kontos

Senior Scientist
KITE-Toronto Rehabilitation Institute, University Health Network
550 University Ave., Room 11-171
Toronto, ON, Canada, M5G 2A2

E-mail: Pia.kontos@uhn.ca


Christine JONAS-SIMPSON is an associate professor of nursing at York University and was the director of Philosophy and Academics at the Dotsa Bitove Wellness Academy for persons living with dementia (2014 to 2019). She conducts arts-based research through music, drama, paintings, and documentary film with the intent to open conversations and inspire ways of being that can transform the quality of living for persons, families and communities living with dementia.


Christine Jonas-Simpson

Associate Professor
School of Nursing
York University
321 HNES
4700 Keele Street
Toronto, ON, Canada, M3J 1P3

E-mail: jonasimp@yorku.ca


Gail MITCHELL is professor emeritus of nursing at York University in Toronto, Canada. Her research interests include arts-based methodologies for creating and translating knowledge. She has worked with persons and families living with memory loss for more than 30 years.


Gail Mitchell

Professor Emeritus
School of Nursing
York University
4700 Keele Street
Toronto, ON, Canada, M3J 1P3

E-mail: gailm@yorku.ca


Gray, Julia; Dupuis, Sherry L.; Kontos, Pia; Jonas-Simpson, Christine & Mitchell, Gail (2020). Knowledge as Embodied, Imaginative and Foolish Enactment: Exploring Dementia Experiences Through Theater [41 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 21(3), Art. 2, http://dx.doi.org/10.17169/fqs-21.3.3444.

Copyright (c) 2020 Julia Gray, Sherry L. Dupuis, Pia Kontos, Christine Jonas-Simpson, Gail Mitchell

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