Re-claiming citizenship through the arts

Abstract

Healthcare literature, public discourse, and policy documents continue to represent persons with dementia as “doomed” and “socially dead.” This tragedy meta-narrative produces and reproduces misunderstandings about dementia and causes stigma, oppression, and discrimination for persons living with dementia. With few opportunities to challenge the dominant discourse, persons with dementia continue to be denied their citizenship rights. Drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and construct an alternative narrative of dementia using the arts. Our research demonstrates the power of the arts to create transformative spaces in which to challenge dominant assumptions, foster critical reflection, and envision new possibilities for mutual support, caring, and relating. This alternative narrative supports the reclamation of citizenship for persons living with dementia and fosters the relational citizenship of all.

Keywords

dementia narrative citizenship critical arts-based research relationality embodiment

Who are they to say this is my story

( Baldwin, 2008 , p. 223)

Persons with dementia are among the most stigmatized around the world due largely to dominant assumptions in public narratives (e.g. such as academic and healthcare literature, public and policy discourse) that frame persons with dementia within a medical model and convey them as lost, robbed of mind, doomed, gutted, and the living dead (Mitchell, Dupuis, & Kontos, 2013). These meta-narratives are premised on an assumed existential erosion of selfhood with dementia “until there is nothing left” (Davis, 2004, p. 375). They comprise a “tragedy discourse” that has profound consequences for persons living with dementia and their families, producing and reproducing stigma and misunderstanding about Alzheimer’s disease and related dementias and causing much of the harm, suffering, and discrimination endured by persons and families living with dementia. The tragedy discourse shapes how persons with dementia perceive themselves, how they are perceived, judged, and treated by others as evidenced by the dehumanizing practices in dementia care, and the choices and opportunities made available to them, all of which affect their ability to exercise their citizenship.

In privileging these meta-narratives of dementia, opportunities for alternative stories are closed down (Baldwin, 2013). Nedlund and Nordh (2015) describe the power of dominant discourses reflected in public narratives in affecting “the construction of citizens, the citizenship content, and space within which people with dementia can exercise their citizenship” (p. 124). Within the biomedical frame of reference, for example, persons living with dementia come to be defined only as patients and clients rather than as citizens, which has harmful consequences for the recognition and support of their citizenship (Bartlett & O’Connor, 2007). Further, the perceived loss of self with dementia is accompanied by assumptions of loss of agency, leaving only a body to be managed and controlled. When biomedical and tragedy discourses are privileged, persons with dementia experience a loss of entitlements, rights, and protections and opportunities for choice, self-determination, and inclusion are often not provided (Mitchell et al., 2013).

Further, the tragedy discourse entraps persons with dementia in reductive and oppressive relational domains where they are denied the basic requirements for life—love, compassion, and respect (Romesin & Verden-Zöller, 2008). As emphasized by Romesin and Verden-Zöller, “we are love-dependent animals at all ages” (p. 13). However, our history as loving and compassionate beings is being challenged by political master narratives that promote power relations, control, divisiveness, and distrust (Romesin & Verden-Zöller, 2008). The tragedy discourse creates manners or ways of living that can establish a cultural drift that moves humanity away from its co-operative and loving ways—this is no trivial matter, as noted by Romesin and Verden-Zöller. Stigma, judgement, hatred, mistrust, fear, and aggression are emerging as strong life patterns that may create such a drift and may be sustained by future generations (Romesin & Verden-Zöller, 2008). All citizens are responsible for the choices they make about what to attend to, how to speak, how to be in practice—and the ethical consequences they generate (Woermann & Cilliers, 2012). We strongly propose that our conversations about dementia and persons who live with it must change. We need to stop the tragedy discourse of gutted and empty human beings and create new ways of speaking and living that are foundationally loving and inclusive and more fully support the citizenship of all.

Turning to citizenship has global appeal that can help expand discussions about the kind of human relations and emotions that we want to create for the future of humanity, especially for disadvantaged, vulnerable, and marginalized groups of persons such as individuals living with dementia. Citizenship brings questions of power, control, and the politics of human relations to the fore (Bartlett & O’Connor, 2007). It helps us problematize the circumstances for persons with dementia (Nedlund & Nordh, 2015) and makes visible how some are denied access to the full possibilities in life. It recognizes persons living with dementia as active agents in shaping their own lives and experiences and the important role they can play in challenging the dominant ways they and their lives are storied as tragic.

A growing body of research demonstrates the power of the arts for exposing taken-for-granted assumptions, challenging dominant discourses, and promoting personal and social change (Finley, 2005). Such methodologies open up spaces to make visible the abilities, power potentialities, and talents of individuals often viewed only as deficient. They create opportunities for others to understand how individuals most marginalized “identify themselves as citizens and value their activities as expressions of citizenship” (Smith, Lister, Middleton, & Cox, 2005, p. 441) and open up possibilities for alternative narratives to be told. In this article, drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and narrativize an alternative discourse of dementia using the arts. By examining what this experience was like for all involved, we demonstrate the transformative potential of community, arts-based approaches for the reclamation of citizenship for persons with dementia and the fostering of relational citizenship for all.

Narrativity and citizenship

It is not that life is like a story. On some extremely basic level, it is a story—a life story—a story that is ‘telling itself in the living’. (Bridges, 1980, p. 71)

To redress the social and structural disadvantages, oppression, and discrimination faced by people with dementia, particularly individuals who experience severe cognitive challenges, Bartlett and O’Connor (2007) argued that a citizenship perspective is needed to “promote the status of discriminated groups of people to that of an equal citizen, with the same entitlements as everyone else” (p. 108). In the context of dementia studies, the traditional conceptualization of social citizenship has been critiqued for its “emphasis on self-cognizance,” (Bartlett & O’Connor 2007, p. 108) since it deepens the social devaluation of individuals who, as defined by others, lack the cognitive capacity to participate as full citizens (Delanty, 2000). Within this traditional conceptualization of citizenship, individuals who are not able to assume responsibilities or fulfil civic obligations become disregarded and viewed as non-citizens (Bartlett & O’Connor, 2010). As non-citizens, persons living with dementia are denied “the most fundamental of powers—the power to be” (Behuniak, 2010, p. 233). In defining the same rights and responsibilities to all citizens, traditional conceptualizations also overlook difference, denying not only differences within groups of people but also across diverse cultures, ethnicities, religions, abilities, and so forth (Bartlett & O’Connor, 2010). For example, Smith et al. (2005) have argued that the traditional model of citizenship fails to account for participation beyond political engagement and employment and thus is exclusionary in that it fails to recognize and support what young (and old) people already “do as citizens” (p. 441, italics added).

Bartlett and O’Connor (2010) offer an alternative conceptualization of social citizenship in dementia studies to achieve unconditional inclusion:

Social citizenship can be defined as a relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible. It involves justice, recognition of social positions and the upholding of personhood, rights and a fluid degree of responsibility for shaping events at a personal and societal level. (p. 37)

This conceptualization suggests that what is needed is a citizenship practice that supports and recognizes the power potentialities and ways power is actualized in the dementia context (Behuniak, 2010), the importance of relationships to the experience of citizenship, and the unique expressions of citizenship by people living with dementia (Miller & Kontos, 2016). Baldwin (2008) offers a constructive approach to achieving this. Drawing on the connections between narrative, personhood, and citizenship and recognizing how we are all narrative beings, he offers a reconceptualization of citizenship that illuminates the range of ways persons with dementia, through narrative agency, story their experiences and lives. Baldwin emphasizes: “This narrative agency depends upon: a) being able to express oneself in a form that is recognisable as a narrative, even if one’s linguistic abilities are limited …; [and] (b) having the opportunity to express oneself narratively.” (p. 225)

Baldwin (2008) describes three ways the narrative agency of people with dementia can be supported. First, he argues that narrative agency can be articulated by persons living with dementia in diverse ways, as much through dance, sound, music, movement, their actions, and artistic expression as through verbal means. Creative and artistic opportunities are particularly important to the expression and reclamation of citizenship for persons who are “narratively dispossessed because their stories cannot be told within the current way of conceptualizing and operationalizing narrative as a means of accessing, understanding, creating and maintaining lives and identities” (Baldwin, 2006, p. 105). Actions can be another important way that people with dementia share their stories. In highlighting the importance of actions in demonstrating the continued power potentiality of persons living with dementia, McColgan (2005) documented how persons living with dementia in long-term care homes expressed their citizenship by resisting the surveillance, controlling culture of long-term care through their deliberate yet subtle actions such as feigning sleep and claiming space. Narratives are also embodied. Our bodies absorb the discourses of the broader socio-historical landscape and the stories of individuals and organizations (Kontos & Martin, 2013), and are also a means of expressing our own stories, our lived experiences (Kontos, 2012; Kontos & Martin, 2013). As deMedeiros (2014) emphasizes: “The body has lived, felt, and been hurt, and therefore it houses memories of its own” (p.48). Kontos (2004, 2005, 2006) developed the concept of embodied selfhood to capture how the body itself is an agential source of interactive and communicative practices, particularly when cognition is challenged, and is thus fundamental to storytelling. Premised on the pre-reflective notion of agency, the capacities, senses, and socio-cultural dispositions of the body are central to self-expression, agency, interdependence, and the reciprocal nature of engagement (Kontos & Martin, 2013). Embodiment discourse can both broaden and enrich the narrative citizenship model by offering theoretical explication of the significance of the body’s potentiality for both telling one’s story and for innovation and creative action in dementia care (Miller & Kontos, 2016).

Second, Baldwin (2008, 2015) reminds us of the critical role we all play in facilitating opportunities for narrative expression and in the co-construction of narratives. This highlights the relational nature of citizenship, which is captured in a new model of citizenship (see Miller & Kontos, 2016) that includes recognition of the important role that relationships play (between persons with dementia and carers, and also with institutional policies, structures, and practices) in shaping and sustaining the citizenship entitlements of persons with dementia. Further, this model emphasizes that embodied selfhood is a fundamental source of relationality for persons with dementia. A number of examples are emerging where people with dementia are working actively with others to narrativize new co-constructed stories through participatory action research (e.g. Dupuis & Gillies, 2014; Dupuis, McAiney, Fortune, Ploeg, & deWitt, 2014; Dupuis et al., 2012), and the nurturance of the creative and imaginative potential of people living with dementia (e.g. Beard, 2011; Dotsa Bitove Wellness Academy [http://www.dotsabitove.com/]; Genoe & Dupuis, 2013; Killick, 2008; Killick & Chapman, 2009; Kontos, 2014; Kontos & Martin, 2013; Kontos, Miller, Mitchell, & Stirling-Twist, 2015; Music for Life [http://wigmore-hall.org.uk/learning/music-for-life]). These examples powerfully concretize the core principles of relational citizenship in practice (Miller & Kontos, 2016).

Finally, Baldwin (2008) emphasizes how narrative agency can be supported through recognizing and examining “the contributions made by people with dementia to the narratives of others” (p. 225). From this perspective, we need to ask: how do the stories of persons with dementia alter our own life narratives? The verbal and written narratives of persons living with dementia, such as those produced by the members of the Dementia International Alliance (http://www.dementiaallianceinternational.org/), the Scottish Dementia Working Group (http://www.sdwg.org.uk/), the By Us for Us Project of the Murray Alzheimer Research and Education Program, and published in academic journals (e.g. Beard, Knauss, & Moyer, 2009; Capstick & Clegg, 2013; Ward, Campbell, & Keady, 2014), challenge dominant discourses on dementia and force readers and listeners to reflect on their own understandings and revise their own narratives. Despite these efforts, however, people with dementia continue to be excluded from the narrative enterprise and have limited opportunities for narrative expression (Baldwin, 2008; Nedlund & Nordh, 2015).

Stories are always embedded within a wider social and cultural context. That is, “lives are never storied in isolation but in interaction with others’ lives as well, within complex webs of larger stories still” (Randall & McKim, 2008, p. 10). The nature of relationships and the broader context can constrain, silence, ignore, dismiss, or exclude certain stories or facilitate and support the telling of multiple, competing stories. Kontos, Miller, Mitchell, and Stirling-Twist (2015), for example, demonstrated the creative strategies and techniques used by elder clowns to support the embodied capacities, self-expression, creativity, and co-construction of stories, what Miller and Kontos (2016) argue concretizes the empowerment of relational citizenship participation for individuals with severe dementia. However, they also provided compelling examples of how micro and macro factors can undermine these same expressions and threaten the expression of citizenship for persons living with dementia. As Baldwin (2008) notes: “Being able to tell [a different version of the same story] depends on how our story interacts with those of others and the opportunities and resources we are given to tell that story” (p. 227). Here, we believe, lies the possibilities of narrative citizenship and the integration of the three ways of including people with dementia in the narrative enterprise: when provided with creative opportunities to challenge dominant and oppressive master narratives, new emancipatory stories can emerge, and when shared or co-constructed, new ways of being can be imagined (Baldwin, 2008).

Methodology and methods

There is always another version of the same story to be told. (Baldwin, 2008, p. 227)

A growing body of research demonstrates the effectiveness of the arts for engaging individuals in critical reflection and changing images, understandings, and actions (e.g. Dupuis et al., 2015; Gray & Mitchell, 2016; Kinsella, 2007; Knowles & Coles, 2008). Many have argued that the arts are, in fact, more effective for addressing social justice because they are better able to represent the complexities of lived experience in accessible and emotional ways, opening up new ways of seeing, and broadening understanding (Clover & Stalker, 2007; Knowles & Coles, 2008; Mitchell et al.,2011b; Mitchell, Dupuis, & Jonas-Simpson, 2011a; Watkins & Shulman, 2008). The arts provide avenues for presenting alternative discourses, practices, and research findings in ways that confront stigma and bring oppressive policies and practices to light (Clover & Stalker, 2007; Dupuis et al., 2015; Mitchell et al., 2011a). As liberation arts (Watkins & Shulman, 2008), the aims of critical arts-based inquiry are to: expose absurdities in language/discourse, activities/practices, and ways of relating/organizing that marginalize and other so as to unveil oppression; challenge these taken for granted understandings; and transform praxis (Finley, 2005). As Finley (2011) states:

From within the liminal openings that are created by the performance/practice of arts-based inquiry, ordinary people, researchers as participants and as audiences can imagine new visions of dignity, care, democracy, and other decolonizing ways of being in the world. Once it has been imagined, it can be acted upon, or performed” (p. 443).

Critical arts-based approaches escape the reproduction of master narratives by interrogating often conflicting stories and juxtaposing multiple perspectives (Norris, 2009). As Baldwin described earlier, the arts are also an important means by which persons living with dementia can express their narrative agency—their narrative citizenship (Baldwin, 2008).

As part of a larger arts and community-based research project focused on the creation of a research-based drama that challenges the tragedy discourse of dementia—Cracked: New Light on Dementia—we brought eight persons with dementia (two females, six males), seven family members (five females, two males; six spouses, one sister-in-law), seven visual artists (all female who worked in different visual art mediums), eight performance artists (five females, three males; one being a researcher/author on the paper), seven researchers (four whose research focused on dementia and are the other authors of this paper, three others who volunteered to assist during the workshop) together in a one-day workshop. Persons with dementia and family members were recruited through local Alzheimer Societies where staff circulated an information letter describing the workshop and what participation would involve. Those willing to participate in the workshop or who wanted additional information were asked to contact the lead researcher. The visual artists were recruited using a similar process and an information letter was circulated within the art networks of an artist/researcher who worked with the lead researcher on another project. The performance artists were all working at the time with the four primary researchers on the development of Cracked and the workshop was used as one way for the actors to interact in a more direct way with persons living with dementia and their family members and learn from them about the experience of living with dementia.

In the morning, and in two separate audio- and video-recorded focus groups, we worked with persons with dementia and family members to interrogate the implications of the tragedy discourse for persons and families experiencing dementia and to begin to create an alternative discourse. Persons with dementia and their family members were asked to dialogue around questions such as: How has the current way dementia is depicted affected you and your life? What are the things you would like to change about how others see you? What do you want the world to know about you and your experience of living with dementia?

During these two focus groups, everyone in the room together had a chance to hear and learn from the stories of persons with dementia or family members about what they experience and how they feel about the dominant messages of loss, decline, and dysfunction. In the afternoon, small groups were formed, where persons with dementia and their family members worked with one of the visual and performance artists and a researcher, to co-create an artistic reflection of what our partners with dementia wanted the world to know about them. Through this embodied and sensory experience, that involved playing with colors, imagining and visualizing scenes, working with and handling different textures and materials, placing and moving images and objects, stroking paint brushes on canvases, observing bodily expressions, and so forth—new co-constructed narratives emerged. Working collaboratively, eight visual and poetic expressions were created that powerfully challenge dominant assumptions within the tragedy discourse: despite loss, change, and sadness, persons with dementia are supported by loving networks, embracing life, remaining active and engaged, breaking the silence, and transforming with new possibilities (see Appendix 1). Consistent with other critical arts-based researchers (Butler-Kisber, 2002; Irwin & de Cosson, 2004; Norris, 2009), we saw our participatory process as creating a transformative space where understandings could be interrogated, and new data could be generated and transformed into poetic and artistic representations of experience that privileged the voices of persons with dementia.

Within the month following the workshop and starting with the persons living with dementia in the first week, audio-recorded telephone interviews were conducted with all who participated in order to explore their experiences and the creative and expressive potential of community, arts-based research (see Table 1 for a list of questions). The visual expressions that emerged during the day were sent to persons living with dementia prior to their interviews to stimulate recall of the day and serve as a starting point for these conversations. The interviews were conducted by research assistants who were not involved in the day.

Table 1.

Questions explored in audio-Recorded telephone interviews.

• What was your experience participating in the arts? How did you feel about the day?

• What did you like best about the day? Can you provide an example? Why did you like that aspect of the workshop?

• What, if anything, did you not like about the workshop and why? What could we have done differently?

• What, if anything, changed for you because of your involvement in the workshop? How has the workshop impacted you?

• How might the art that was created during the workshop influence the lives of persons with dementia and their family members? What do you think the benefits of this project will be for persons with dementia and their families?

• What else would you like to share about your experience?

The narratives from the telephone interviews—the focus of this paper—were analyzed by all of the authors using an adapted process of critical creative hermeneutic analysis as described by Van Lieshout and Cardiff (2011). After preparing the raw data for analysis—preparation—all the narratives for a specific group (e.g. persons living with dementia, visual artists, etc.) were distributed among the five co-researchers/authors of this paper so that each group of narratives was analyzed by two of these researchers. In familiarization, the researchers independently became intimately acquainted with the narratives they had been assigned. The researchers then came together to collaboratively explore the narratives and common and divergent understandings. This began with contemplation and expression, where each researcher engaged in “dialogue with self” (Van Lieshout & Cardiff, 2011, p. 228), reflecting on what the experience of engaging with the narratives was like and what stood out for them. They were then asked to write the story of the narratives they engaged with that would “express the ‘essence’ of the texts, as a whole” (p. 228). After the sharing of individual expressions, a process of contestation and critique began in which researchers questioned each other’s understandings, examined alternative interpretations, and started to elucidate the specific aspects or patterns that reflected or characterized the community, arts-based experience. In blending, where individual understandings are integrated into a shared, collective understanding, we began to see the relational pattern in the narratives and to work collaboratively to develop definitions for the each of the relational processes. Finally, in confirmation, each of the researchers separately went back to the group of narratives they each analyzed, drawing out quotes that represented each of the emerging relational processes, being attentive to data that might conflict with the emerging understanding or that might suggest something had been overlooked. These quotes were used by the team in the construction of our narrative on the experience of the day that follows. The quotes in our narrative are not presented as evidence of those involved, as we believe all stories are already co-constructed, a complex integration of personal ideologies and experiences, broader discourses, and so forth. As Crotty (1998) notes: “When we narrate something, even in telling our very own story, it is … in the voice of our culture—its many voices, in fact—that is heard in what we say” (p. 64). Rather, we use the quotes to weave together multiple, diverse voices from across the experiences we witnessed, and the stories of the day shared with us in our co-construction of one community, arts-based experience.

Relational possibilities of critical arts-based inquiry: connecting through the cracks

Art programs can be life changing (Family member involved in workshop).

In the bringing together of diverse voices and experiences and through the creation of a safe, creative, and participatory space for dialogue and interrogation, deeper human connections were forged. It is within this expressive interface that we opened up to understanding ourselves and others around us more deeply. A community emerged. As an artist expressed: “I think there was a great bond created just through the process of creativity. It was felt it shouldn’t end! … Some very significant bonds. We were so good altogether.”

In connecting through the cracks—where it is recognized that all humans have cracks—a unique relational pattern emerged. The pattern is constituted of and energized by the interconnections of four core relational processes: mutual storying, letting go amid vulnerabilities, inspiring relational possibilities, and co-transformational emergence. Each relational process informs the other processes, which are not mutually distinct; rather the processes interweave, connect with, and reflect the emergent relational pattern.

Mutual storying

Members of the group expressed their own experiences and listened to the experiences of others. As persons listened to the stories of others, they revised their own stories in light of insights garnered from others—like a choreography of co-emergence. This mutual storying contributed to a relational shaping of the in-the-moment experience. As persons with dementia and family members shared their stories with each other, they were personally changed by the stories they heard each other tell. For example, persons living with dementia and family members were awakened to continued abilities and empowered by the potential they had to make a difference. Actors, artists, and researchers who engaged and witnessed the stories were also changed as reflected in their own stories. As the mutual storying unfolded, and in the engagement and attending to the stories of others, everyone’s story was changed and retold in new ways.

Bourriaud’s (2002) work in relational esthetics/art is useful here in thinking about embodied participation in community that changes personal understandings and stories. Relational esthetics help to frame art work as not solely what was originally created by the artist, but the esthetic experience of engaging with the art work; the art work takes its meaning by what takes place between an active viewer and an art work, which has the potential to shift assumptions and understandings. One person with dementia reflected a shift in personal understanding: “[N]ow that I know that there’s people just like me who have it and they can go on with their [life], I can still go on with my life.” Family members similarly spoke of the impact of the workshop on their own stories. One family member stated:

Hearing from other family members about their perspective and how they advocate for their partners and getting involved to let the community know all that is involved, that these people still have something to contribute to society, they’re not doomed because of their diagnosis.

Artists, actors, and researchers also spoke about how their stories were personally changed through the process. An artist talked about the reciprocity engendered by the process and the importance of this for shifting her story:

The participants left with something, I left with something, so there was an exchange as opposed to I’m here and I’m going to give you stuff and walk away totally drained! I didn’t walk away with the feeling, ‘I gave my time for something great!’ I walked away with personal change.

An actor described a shift in his personal story with persons living with dementia: “I think it made me overall … more comfortable being around people with dementia knowing that they don’t want to be forgotten, they’re still here.” Another actor said: “I felt surprised that it was such a positive experience. I thought there would be joy as well, but not to the extent that there was on that day. It really was life altering.” Even the researchers were deeply impacted. For example, one commented on the transformation of her story:

When I sat and listened to the focus group with people with dementia I was just blown away by what they shared, by their hope and courage and their lust for life … I knew some of that and yet some of it I saw in a very new way, in a very different way, it was very inspirational.

Letting go amid vulnerability

Individuals involved in our project spoke of letting go—of fear, expectation, invisibility, insecurity, assumptions, the tragedy discourse, and so forth. One of the researchers, for example, spoke about the fears that were released for her in the recognition of new possibilities: “It makes me even less afraid of getting dementia because [persons with dementia] talked not only about things that we’ve heard before but they talked to us … about even becoming better.” A person living with dementia inferred the importance of letting go of the tragedy discourse and said:

I really hope more people will start thinking positively after receiving a diagnosis of dementia. They need to realize this isn’t a death sentence, and most of us still have many years of useful living … we’re not horned demons or anything, we’re just people who don’t remember.

Being reminded of continued abilities helped persons with dementia to rise above the confines of dementia and begin to create an alternative discourse to the one focused on disability: “See if the dementia can stay out of it for a bit and we can do it a different way, and it really worked, and for me that was probably the happiest thing I got.” They were able to let go of fears and leave with a sense of comfort: “[I] feel stronger—don’t worry about it anymore.”

In the letting go, there was also awareness of vulnerabilities, in the questioning of one’s own ability to live up to expectations, or to face the unknown with courage, or with the hope/uncertainty that change really can happen as a collective transcendence. An artist spoke about the sense of vulnerability she felt and yet the strength that was felt in working together:

I did realize that [the art expressions] were going to be worked on in the afternoon, but before that hadn’t really given any thought to the fact that I am not particularly versed in the art of painting or collage. [My art is different]. So when that part of it came I did feel a little bit out of my element although we all did manage, as it was a group effort. It was a growing and learning experience for me for sure.

Similarly, a researcher described how initially she was apprehensive about how the day would evolve until she was able to let go of that and let the process unfold as it would: “I was a little nervous in how it would go … somehow it just moved into a beautiful rhythm.”

In the letting go and the openness to vulnerability, a possibility discourse emerged. An artist spoke of how she was inspired to “open [her] eyes to an entirely different … way of thinking and looking at [dementia].” An actor spoke honestly about the images he was letting go of:

They represented power, like people were talking about how they had powers, someone with dementia, and that’s not something you would think traditionally. When you think about … dementia, you think of someone withering away and disappearing. So to have those images actually be a presence I think is, would be very inspiring.

Other actors commented on the possibility discourse that can arise with the letting go of former perceptions. One said, “You can see from the [art] that there was a lot of flight and air and sense of freedom—what people are striving for.” And another said,

How they want to be perceived and the joy that they're experiencing in their life … it was beyond what I could possibly have imagined. So after that it was just really, going on this ride not knowing where it would take you. It was quite magical.

Researchers were opened to their own vulnerabilities in how they too may share in the tragedy discourse unknowingly. One said:

I think that’s what continues to be challenged for me too, is that I take on some of the assumptions, some of the tragedy discourse sometimes and have stereotypes that sometimes I don’t even understand that I have and then I go to one of these workshops with people with dementia and I’m reminded about that.

Another researcher’s passion for challenging the discourse was reaffirmed: “I learned a great deal from the care partners and the people living with dementia and it reinfused me with a sense of the significance and the importance of challenging this tragedy discourse.”

Inspiring relational possibilities

The energy created in the process of the day inspired everyone involved to imagine new ways of being and relating, with self and with each other, as individuals, and in the possibilities for future work, day-to-day life, activism, and professional opportunities. We all were inspired not only in the presence of others, in the process of relating, but also in the shared stories of truth, love, hope, and fear. A person with dementia simply said: “It made me feel that I can do things.” Others with dementia described the inspiration they received from being and creating together: “We need to go ahead and do what we think will make us happier, and doing something that we think that can probably do more than just sit and wonder what dementia is, and what it’s going to do.” Another said, “I’m going to do as much as I can for as long as I can. So that, kind of, was a push for me.” Another talked about new aspirations for the future: “I want to do something in my life … to have new experiences.” A family member described the inspiration he received: “[I’m] realizing that there is life after Alzheimer’s—you still exist, you still have to maintain, you still have to thrive and look forward.”

In the community that was created through the collaborative art process and in being awakened to the capacities of others, artists, actors, and researchers, all described how they too were opened up to new possibilities in their own lives. An artist, for example, spoke about new possibilities for her creative process:

Artistically, just seeing the kind of courage and freedom that people brought to the creative process has opened up my own creative process, and just loosened some of my inhibitions that you get as your kind of setting standards for your work and stuff.

An actor talked about seeing life differently:

It just makes your heart beat quicker, or skip a beat. Some of these [artistic expressions] are just … they all speak volumes without speech … they're pretty amazing to look at it and it just gave you a feeling of hope, and strength, and perseverance, and joy, and love of life.

Similarly a researcher described how she felt at the end of the day:

It was incredible when we all met back in the [main] room and the facilitators and artists showed what had been developing during the afternoon—That was very powerful in terms of summarizing the possibilities dementia has provided … I think at the end seeing all this hope and possibilities and these words and images that aren’t typically associated with dementia, I just thought, wow.

Co-transformational emergence

In the process of being together with a shared purpose, all involved expressed a personal change that was transformational, deep, unplanned, and meaningful. A researcher said, “I’m suddenly a different person forever for having experienced this … [I] will never forget.” The changes happened with others and were unexpected, surprising, and expansive in the energy created and in the shifting of perspectives and understandings that were newly created. After the workshop, many spoke of the enormous energy they had and how good they felt about what emerged from the collective in working toward societal change. One artist said:

There was a great positive energy in everyone after the end of it. I was completely energized. In fact I told [name of researcher] at the end, ‘I’m totally charged up! I haven’t felt this way in a long time about something I’ve done!’

The personal change and energy ignited a thrust for action among partners—activism from the collective—as they were able to see their role, individually and collectively, in working towards personal and societal change, and a new discourse of possibility. One person with dementia reflected a passion for activism that was activated during the workshop: “[These artistic expressions] need to be put out so that everybody can see them and everybody can use [them] to say this is the kind of thing that you can do with Alzheimer’s.” Another person living with dementia described personal affirmation in her activist efforts after engaging in the workshop and was reminded of the continued contributions she could make as a citizen in her community:

[It] reinforced me in my efforts to teach everyone that there is life after diagnosis. I need to keep on teaching everyone I meet. The workshop has given me a real boost in knowing that we can make a difference.

Others involved in the process spoke about being moved to learn more about dementia. One artist stated:

It was just a really encouraging, positive day, and prompted me to learn a little more about the disease. Which, you know, I thought I knew quite a bit about already, but I certainly don't. And, there's always room to learn more.

Actors and artists who also have personal relationships with family members living with dementia talked about how they were relating differently with their family members. For example, an artist described how the day had made her think differently about her care role: “I’ve been trying to work towards a more positive attitude with helping to care for my mother.”

Those involved spoke of the potential impact of hope they had helped create. One artist described it in this way:

My mind just floats away with all kinds of ideas and excitement, over the work that's being done, and the potential for where it could go … The other thing too is the story that goes … with each of those [art pieces], is also a huge positive vehicle for expressions and for … giving hope I guess—an idea of a hopeful future is—I think, what is the power of those [art pieces].

Researchers too were inspired to engage in their work in new ways. For example, a researcher who does not conduct research on dementia but volunteered to help us for the day stated: “It will make me think differently about how I do research with some marginalized communities.”

Discussion and conclusion

Narrative citizenship offers an innovative way to fashion a new discourse of citizenship and dementia at a time when opportunities for narrative expression by people living with dementia are limited (Baldwin, 2008). Our community, arts-based project provided just such an opportunity by opening up a space for the voices and stories of persons living with dementia to be shared and heard. It further supported the exercise of citizenship in practice through the facilitation of the telling of stories through the embodied practice of participatory arts. This effectively challenged, in profound ways, the predominant tragedy discourse and showcased the wide range of embodied narratives of persons with dementia and their family members. Persons with dementia involved in the workshop used metaphor and images of dancing, painting, climbing, traveling, power, learning new skills and activities, taking risks, breaking the silence, being physically active, being embraced in loving relationships, connecting with others, and making a difference through their broader activist work. These narratives encompass “dimensions such as how people experience themselves in collective and cultural terms, and highlights elements such as identity, solidarity with others, social membership, belonging, the politics of recognition, and by being a political actor in community” (Nedlund & Nordh, 2015, p. 124). They highlight how the participants exercised their narrative citizenship.

When persons with dementia and their family members in our study were able, with others, to interrogate the discourse, stigma and stereotypes that surrounded their lives, their meaning lost significance and opened up alternative discourses of possibilities, of hope, both for themselves and for others through mutual storying. Collective art-making provided a transformative space where persons with dementia and others could escape the confines of the tragedy discourse and construct and embrace contradictory narratives and reconstitute a more positive sense of self-in-relationship. As an example, one of our community partners with dementia had told very few people about his diagnosis prior to participating in our workshop. He knew all too well what the dominant perceptions of dementia were and spoke of how fearful he was of how others would treat him. He referred to himself as “Quasimodo” (the protagonist in the novel The Hunchback of Notre-Dame by Victor Hugo born with a hunchback and feared by the townspeople as a sort of monster), wearing the stigma of dementia on his back. After the workshop, he told us how things had changed for him, about how in engaging with others he was now ready to “tear the stigma off [his] back.” More recently, he came out publically in a featured newspaper article as a way to more broadly challenge public understandings of dementia. Family members, actors, artists, and researchers involved also spoke of the “life changing” nature of the workshop, demonstrating the power of critical community and arts-based research for individual and collective resistance, and the potential it has for re-claiming citizenship and broader personal and social change.

The experience of participating in the workshop created a space that opened us all to recognizing our vulnerabilities, as human beings and as citizens. Behar (1996) discusses how vulnerability helps us “shift toward viewing identification, rather than difference” (p. 165) and as such vulnerability is not isolated to the individual experience, but occurs in relation to others. It was through a shared/co-witnessed vulnerability that everyone involved in the process, including individuals living with dementia, were able to release previous conceptions of people who live with dementia as exclusively tragic. There is always risk in disclosing to others and to self. Yet doing so opens the possibility to see differently and so we are all vulnerable to the possibilities of change.

Participatory arts as a vehicle for the exercise of narrative citizenship are consistent with the use of other artistic mediums for prompting personal and social change. Mitchell et al. (2011b) demonstrate how theatre can help us see through the eyes of persons living with dementia and gain a greater appreciation for the quality moments they live. Weber (2008) talks about how through engaging with visual images “we see what we never noticed before, even though it was right in front of us” (p. 44). The arts open up a wider expanse beyond the taken for granted, which can challenge dominant culturally accepted truths (Kinsella, 2007). In providing new content to our lives through the arts, new possibilities can be envisioned and acted upon. This is true not only in the creative process but also in the sharing of what is created. For example, in sharing the visual and poetic expressions with others outside of the workshop through art installations, conference presentations, and workshops, audience members have described how the images have disrupted their understandings of dementia and changed their interpretations of the lived experiences of persons living with it. As an example, one audience member, a daughter of a mother with dementia, after engaging with the visual and poetic expressions, shared how she was now seeing a very different story of an experience she had had with her mother; instead of seeing sadness and decline she was opened up to the possibilities of freedom and agency her mother was expressing in the moment. At another workshop, a daughter-in-law talked about the possibilities she now saw for the arts as a means of self-expression for her mother-in-law.

Dupuis and Gillies (2014) argued for an integration of understandings from the radical education tradition and critical pedagogy in dementia research and practice, and demonstrated the potential of alternative approaches in promoting personal growth, strengthening social relationships, and triggering broader social change. Community arts-based approaches provided a safe, accessible space for diverse voices to come together, learn from each other, and challenge and resist dominant dehumanizing master narratives of dementia and envision new possibilities—a “pedagogy of possibility” (Kinsella, 2007, p. 43). Although the arts are predominantly used as therapy or clinical interventions in the dementia context, particularly for managing “behaviours” (Beard, 2011; Dupuis et al., 2012), our research demonstrates the power of the arts for social justice. Participatory arts provided an important venue for people with dementia to exercise their narrative citizenship by constructing an alternative narrative that challenges the basis for their social devaluation by others. In that creative space, all involved (i.e. people with dementia, family members, visual and performance artists, and researchers) were implicated in the construction of this alternative narrative, underscoring the importance of the arts in the collaborative creation of a community of love, compassion, respect, and inclusion that Romesin and Verden-Zöller (2008) call for.

However, reference to relational citizenship (Miller & Kontos, 2016) is critical here to highlight the fundamental connection between embodied self-expression and reciprocal engagement. Participatory arts themselves offered the opportunity to actualize relational citizenship in practice and exercise narrative agency (Baldwin, 2008). In the community that was created, we all were opened up to the roles and power we have in supporting the citizenship of each other; we all saw new possibilities for actualizing relational citizenship and came to understand how we could do citizenship differently—be better citizens. Greene (1995) aptly captures the relational and emancipatory potential of the arts, which we here extend to thinking about and supporting narrative citizenship for persons living with dementia:

Encounters with the arts and activities in the domain of art can nurture the growth of persons who will reach out to one another as they seek clearings in their experience and try to be more ardently in the world. If the significance of the arts for growth and inventiveness and problem solving is recognized at last, a separate stasis may be overcome and hopes may be raised, the hopes of felt possibility … Art offers life; it offers hope; it offers the prospect of discovery; it offers light. (pp. 132–133)

Footnotes

Acknowledgements

The authors would like to thank Lisa Meschino and Jessica Luh for assisting with recruitment and the visual and performance artists and researcher volunteers who participated in the day. They would also especially like to thank the persons living with dementia and their family members who agreed to spend the day with all of us, share their stories and experiences, and work with us to challenge the tragedy narrative surrounding dementia.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Canadian Institutes of Health Research (KTB-117419).

Author Biographies

Sherry L Dupuis, PhD, is a professor in Department of Recreation and Leisure Studies and co-lead of the Partnerships in Dementia Care Alliance at the University of Waterloo in Waterloo, Canada. She is committed to critical participatory action research and arts-based approaches as a means of promoting personal transformation, social justice, and social change in dementia and long-term care.

Pia Kontos, PhD, is a senior scientist at Toronto Rehabilitation Institute–University Health Network and associate professor in the Dalla Lana School of Public Health, University of Toronto. A central objective of her research program on dementia is to challenge dominant assumptions, foster critical reflection, and help to envision new possibilities for supporting, caring, and relating. She has published across multiple disciplines on selfhood, embodiment, and arts-based innovations to improve person-centered and relational care.

Gail Mitchell, RN, PhD, is a professor of nursing at York University in Toronto and past inaugural director of the York-UHN Academy and the Dotsa Bitove Wellness Academy. Her research interests include dementia and stigma, disability and difference, and pedagogy and e-learning. Her research and teaching integrate the arts in discovery and dissemination.

Christine Jonas-Simpson, RN, PhD, is an associate professor of nursing at York University, and the director of the York-UHN Nursing Academy and the Dotsa Bitove Wellness Academy for persons living with dementia. She conducts arts-based research which focuses on how human beings live, transform, and grow with loss and contributes to shifting the culture of dementia care from tragedy and isolation to possibility and relationships.

Julia Gray is a playwright, theatre director, and physical theatre creator based in Toronto, Canada and is currently pursuing her PhD at Ontario Institute for Studies in Education, University of Toronto. She has published across disciplines and her research/artistic interests included research-based theatre, performance-as-research, embodiment and physicality, arts and health, and ageing.

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