Expressions of personhood in Alzheimer’s: moving from ethnographic text to performing ethnography

Abstract

Always cite the published version, so the author(s) will receive recognition through services that track citation counts, e.g. Scopus. If you need to cite the page number of the TSpace version (original manuscript or accepted manuscript) because you cannot access the published version, then cite the TSpace version in addition to the published version using the permanent URI (handle) found on the record page. In Western science, the written text, the most objective, decontextualized, and disengaged discursive style of communication, is the privileged mode of scholarship (Conquergood, 1991;Denzin, 1997;Paget, 1993) This paper discusses the alliance between ethnography and performance, an interdisciplinary configuration referred to interchangeably as ethnoperformance (Paget, 1993), ethnodrama (Mienczakowski, 2001Mienczakowski et al., 2002), and the anthropology of performance (Turner, 1986). It is a genre within ethnography that is appealing to a new generation of scholars committed not just to describing the world but also to changing it (Denzin, 2000). As an example of this new aesthetic practice we discuss the transformation of ethnographic research on embodied selfhood in Alzheimer's disease (Kontos, 2004b) into a dramatic production for nurses and ancillary health care professionals working with persons who are cognitively impaired. The rationale for using drama to translate and disseminate these research findings is threefold: 1) to provide an accessible presentation of research to audiences of diverse disciplinary backgrounds; 2) to recover the experiential immediacy of the body present in the original data gathering setting which, in the case of this dramatic production, permits a powerful demonstration of how selfhood is manifested in gesture and action; and 3) to create a space to engage in a form of social inquiry that resonates simultaneously with critique and the envisioning of new possibilities (Denzin, 1997). Expressions of Personhood in Alzheimer's is a production that not only re-presents embodied expressions of selfhood in Alzheimer's disease, but also critically exposes depersonalizing tendencies of treatment contexts and caregiving relationships that are a consequence of an assumed loss of selfhood that is widely associated with the cognitive deficiencies that lie at the core of dementia. It is our contention that this ethnodramatic production has the potential to open a space for seeing

Improving Client-Centered Brain Injury Rehabilitation Through Research-Based Theater

“…The use of a character that closely resembles the audience by training or profession proved to be a particularly effective mechanism to assist with the development of empathy and alterations in previously held negative opinions. Clearly, verisimilitude is of no small significance to successful uptake of new knowledge and practice change (Kontos & Naglie, 2006. Audience identification with Trish also enabled practitioners to reconsider their own affective practices (McClure & Murphy, 2007).…”

“…Because of its strength in communicating research findings in an emotive and embodied manner , theater holds particular potential for health research which often concerns suffering, healing, and the human condition. Thus a growing number of qualitative health researchers of diverse disciplinary backgrounds are experimenting with various forms of performance as an innovative approach to making research more accessible and relevant in health care settings (Gray et al, 2001;Gray et al, 2000;Kontos & Naglie, 2006;Mienczakowski, 1999;Paget, 1993;Sandelowski, Trimble, Woodard, & Barroso, 2006). There is increasing empirical support for the effectiveness of research-based drama for learning about health, illness, and patient care in various clinical areas (Gray et al, 2003;Gray et al, 2000;Kontos & Naglie, 2006;Shapiro & Hunt, 2003;Sinding, Gray, Fitch, & Greenberg, 2002) including TBI .…”

“…The transformation of data into dance (Bagley & Cancienne, 2001;Boydell, 2011), theater (Eakin & Endicott, 2006;Smith, 2008), poetry (Rapport, 2008), and visual art (Holm, 2008) allows for new representations that stimulate the imagination and expand meaning. Subsumed under the paradigm "performative social science" (Roberts, 2008), these aesthetics invoke a multisensual, multiperspectival epistemology that does not privilege the written text (Kontos & Naglie, 2006).…”

“…As Denzin argued (1997), the performed text recovers the experiences previously represented in the data and then re-presents those experiences as embodied performance. By "doubling back" on the original data, such performances recover the textures, sounds, gestures, and movements of the lived world (Kontos & Naglie, 2006). Research-based drama has proven effective in learning about health, illness, and quality of care in TBI as well as in other clinical specialties such as cancer (Gray et al, 2003;Gray, Sinding, & Fitch, 2001;Shapiro & Hunt, 2003) and Alzheimer's disease Kontos et al, 2010;Kontos & Naglie, 2007;.…”

“…To achieve this, educational interventions should be developed to highlight the importance of clients receiving empathy and respect for their care decisions (Cott, 2004;Sumsion, 1999) and increase therapists' understanding of the challenges that clients and their families face as they move through the health care system and reintegrate into the community (Jumisko, Lexell, & Söderberg 2005). A growing number of scholars advocate the use of the arts such as drama or music in educational interventions for health care practitioners (Gray, Fitch, Labrecque, & Greenberg, 2003;Jonas-Simpson et al, 2011;Knowles & Cole, 2008;Kontos & Naglie, 2006Lorenz, Steckart, & Rosenfeld, 2004;Rossiter & Godderis, 2011;. The use of arts-based interventions promotes self-reflection by encouraging practitioners to examine the ways in which their own practice styles signal underlying assumptions regarding the client and the client's role within the therapeutic relationship (Kontos, Mitchell, Mistry, & Ballon, 2010).…”