From time to time we profile a member of the Critical Physiotherapy Network to find out more about them and their work. In this profile we talk to Pia Kontos who is a Senior Scientist at the Toronto Rehabilitation Institute and an Associate Professor in the Dalla Lana School of Public Health, at the University of Toronto, Canada. Pia is one of our non-physiotherapist members whose work closely aligns with the goals of the CPN. She is a prolific and creative researcher who uses critical social theory and arts-based approaches to examine and address the norms and assumptions underpinning care practices in long-term care and rehabilitation settings. We asked Pia to tell us more about her research and how it challenges the “tragedy discourse” associated with dementia.
I have long been concerned about academic and healthcare literature, public discourse, and policy documents that represent dementia as a never ending funeral, an existential loss, and a death that leaves the body behind. This tragedy discourse has detrimental consequences; an individual’s status as a human being is believed to be fundamentally and irrevocably eroded by dementia because communicative competence and intellectual capacities are inextricably linked to the Western conception of selfhood. This promotes social exclusion rather than a caring community, deprives people with dementia of their dignity, and restricts their participation in society.
My research centrally focuses on challenging this tragedy discourse, a challenge that is premised on the problematization of the ‘cerebral self’ that is driving current conceptions of memory and the aging brain. Equipped with historical and philosophical analyses, and later ethnographic explorations of dementia, I have worked to disentangle the self from the cognitive categories upon which it is presumed to depend. With the notion of embodied selfhood I conceptualize the body as a site for the inscription of discourse and the making of particular subjectivities, and the foundational ground for capacities, senses, and experiences of human agency. This has helped to expand the discourse on dementia by providing the intellectual and narrative resources to examine selfhood and the experience of dementia, and its interconnections with history, culture, power, and discourse.
“I have long been concerned about academic and healthcare literature, public discourse, and policy documents that represent dementia as a never ending funeral, an existential loss, and a death that leaves the body behind. “
My interest in challenging the tragedy discourse comes from a deep seated commitment to achieving culture change in dementia care – to create a culture in which capacities, senses, and socio-cultural dispositions of the body are understood to be central to self-expression, interdependence, and reciprocal engagement, and are fully supported. These efforts have primarily focused on the development of educational initiatives for health care practitioners and family care partners that are premised on an embodied and relational ethic of care. I use theatre in these initiatives because of its enormous interactive, educational, and emancipatory potential; drama facilitates critical reflection on the extent to which contextual and cultural factors influence and shape understandings, assumptions, and practices, it challenges taken-for-granted understandings, and opens a space to envision new possibilities for care. The ethic of care that I advocate also entails redressing the aesthetic deprivation in long-term care settings and thus I strongly advocate participatory arts for their distinct cultural/aesthetic to which embodiment and reciprocity are fundamental.
Whose work and what ideas are you drawn to and why?
My primary interest is embodiment so I’ve been drawn to scholars who treat the materiality of the body as a crucial topic of contemporary thought, specifically as a reflection of historical, political, symbolic, and cultural processes. For example Judith Butler and Pierre Bourdieu importantly take up the dynamism of bodily materiality by theorizing expressive human presence as a function of socio-historical production and power. Their respective theories of embodiment are of exceeding sophistication and insight, but I do think that these theories alone are not sufficient; the pragmatic and epistemological primacy they accord to objective structure/culture leads them away from attending to the physical body as a site of origination. To capture a notion of intentionality other than that which derives from the embodiment of social structures, I have turned to the philosophical insights of Merleau-Ponty. It is Merleau-Ponty’s non-representational intentionality that helped me to understand the importance of capacities, senses, and experiences of bodies for the exercise of human agency.
As a critical health researcher, I am also drawn to sociological theory (e.g. negotiated order, sociology of emotions, critical realism), and epistemology and practice (e.g. tacit knowledge). I have also drawn on critical health geography – specifically the notion of therapeutic landscape – to explore the health promoting and health detracting aspects of client-centred neurorehabilitation.
“I think that professions like physiotherapy face a number of challenges in the coming years.”
How do you think these critical approaches might inform current thinking and practice?
This scholarship provides the intellectual and narrative resources to broaden and enrich people’s understandings of how agency and structure are intertwined, why the relationship between the two assumes the form it does, and in what ways the relationship between them serves to enable and/or constrain good ethical care. Emerging from this critical scholarship are narratives that capture the constructive effects of surveillance and cultural priorities/discursive conventions, but also the primordial potential of the body for tacit knowing, self-expression, and care. An appreciation of this complexity fosters critical reflection regarding point-of-care decisions, and creates a space in which people can envision new possibilities for more fully supporting the humanity of individuals living with dementia or other forms of impairment.
You’ve advocated strongly for a more complex understanding of dementia and long-term care and used a lot of innovative approaches to explore health care and wellbeing in this area. What are some of the challenges researching this field in these ways?
Making an impassioned case for social justice in care and service for persons with dementia has meant taking on the medical discourse that continues to produce a totalizing process involving suffering, discrimination, and violence of inter-relating. This discourse has deep-seated philosophical roots – its legacy is Western philosophy’s tendency to split mind from body, and to position the former as superior to the latter. So shifting the paradigm from one of dysfunction, existential loss, and management/control to the support of the intentional, meaningful, and even creative ways that persons with dementia can express themselves has indeed been challenging. Also, being located in a clinical environment that is dominated by the principles and logic of randomized control trials, evidence based practice, and utility-oriented research has been challenging given that qualitative and arts-based methodologies are often misunderstood, misjudged, and regarded as scientifically inferior by other health researchers. Theatre is an extremely powerful medium for knowledge mobilization; however it involves a huge investment of time and requires a lot more resources than what would typically be needed for more traditional knowledge mobilization strategies. This is another challenge given that theatre productions do not carry the same academic currency as peer-reviewed publications. However I do believe – and the research supports this – that this kind of innovation is precisely what is needed in order to trigger personal, organizational and societal change.
What do you think will be some of the challenges facing professions like physiotherapy in the coming years?
I think that professions like physiotherapy face a number of challenges in the coming years. With the emphasis on aging in place, and research demonstrating that rehab is optimized in home environments, interprofessional competency and adaptations needed to work in home environments will have to be facilitated with educational initiatives and structural accommodations. With research suggesting the benefits of rehab for individuals living with dementia, it will be critical for professions like physiotherapy to receive training in the provision of good ethical care for this population, and to foster close collaborations with dementia care practitioners. New forms of interprofessional collaboration, structural accommodations of home assessments and therapy, and dementia-specific training are some of the challenges I anticipate.
How would you like to see health care practice develop and change in the coming years – generally, or particularly relating to dementia and long-term care?
I’d like to see a culture of care in which capacities, senses, and socio-cultural dispositions of the body are understood to be central to self-expression, interdependence, and reciprocal engagement. We need to cultivate the emancipatory potential of the arts to reduce the stigma that perpetuates social exclusion of persons living with dementia, and to foster a new ethic of dementia care that fully supports the imaginative, creative potential of individuals with dementia.
Want to learn more about Pia Kontos and her work?