I am a Senior Scientist at Toronto Rehabilitation Institute-University Health Network (a rehab hospital) and an Associate Professor in the Dalla Lana School of Public Health at the University of Toronto. My training is in social science, specifically medical anthropology and sociology applied to health, illness, and health systems. You’re probably wondering how a social scientist ends up working in a rehab hospital? And why, you might ask, would I want to work in such a clinical setting? It’s a good story, one about perseverance, and a strong commitment to social justice.
It started many years ago with my ethnographic doctoral study of a long-term care home, an often forgotten quasi-clinical setting. My research challenged assumptions of existential loss with dementia by focusing on the fundamental role of the body – its capacities, senses, and experiences – for body-self/body-world relations including self-expression, interdependence, and reciprocal engagement. . Disentangling selfhood from cognition and grounding it in the body’s dynamic and complex interconnections with history, culture, power, and discourse – captured with the theory of ‘embodied selfhood’ – not only problematizes the ‘tragedy discourse’ that has come to define dementia, but importantly problematized the inhumane nature of dementia care (e.g. reducing care to bodily needs within a unidirectional, provider-as-expert model). Because of the important implications of embodied selfhood for improving clinical care, I chose to do my postdoctoral training in a clinical setting – Toronto Rehab – where an opportunity came up.
As freshly minted PhD, I had grand aspirations to engage scientists, health care practitioners, and decision-makers about my research, and to humanize dementia care. But I quickly recognized that I couldn’t rely on theory to catalyze discussion about the meaning of embodied selfhood in practice. Yet theory was my strength; it’s what I knew best. I needed instead a medium that would allow me to translate the theory to help others to critically reflect on their understandings, assumptions, and practices regarding selfhood, including the factors that shape the way that care is organized. But how to do this, and do so effectively, was a challenge. I ended up turning to theatrical performance – no doubt a function of my anthropological training and appreciation for the nuanced dramaturgy of everyday life. But I had no background or formal training in performance. So I collaborated with a theatre director/playwright and embarked on a very steep learning curve. I learned that ‘staging data’ requires a different kind of interpretation to create a storyline, scenes, and characters informed by research. I came to see the power of theatrical devices like music, dance, and metaphor to engage audiences. Yet just as my work on embodied selfhood in the context of clinical health research was quite “transgressive” (one need only consider the devaluation of critical qualitative research within health research with the rise of the neoliberal knowledge economy), so too was my use of theatre given the importance accorded to the economic functions of knowledge at the expense of its social functions. But I nonetheless persisted with this work – art for social justice – driven by a deep and unwavering commitment to making this a better world for people living with dementia.
I succeeded in obtaining funding to support this work from federal agencies, foundations and societies. And the work has proven highly successful in conveying the principles of embodied selfhood, in decreasing formal and informal care providers’ prejudices regarding dementia, and in triggering individual and collective action to address stigma and improve dementia care. While the arts have proven to be critical to achieving my efforts to humanize dementia care, critical social theory is no less significant. I have enriched the theory of embodied selfhood by drawing on political theory, moral philosophy, and feminist care ethics; this theoretical work has helped me to conceptualize and articulate a new ethic for dementia care that promotes human flourishing. I do believe it is of great moral urgency to challenge the current biomedical ethics of reductionism, which contributes to the dehumanization of persons living with dementia, denies them their dignity and human rights, and threatens their health, well-being, and quality of life. This is my commitment.
My work involves the use of 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. I use diverse critical theoretical perspectives and qualitative and arts-based methodologies to challenge dominant assumptions that marginalize individuals because of age, cognitive impairment, or other forms of disability, and to foster critical reflection and trigger practice change.
I am very interested in 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 me 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 would be interested in exploring how such a perspective might inform understanding of physiotherapy/rehabilitation practices in other clinical areas that involve work with individuals with either cognitive or physical impairment (e.g. stroke, Parkinson’s disease), or both.
Relevant Publications: [See all publications at Google Scholar: https://scholar.google.ca/citations?user=_waFWA8AAAAJ&hl=en&oi=ao
Kontos, P., Grigorovich, A., Kontos, A., Miller, K.L. Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality. Dementia: The International Journal of Social Research and Practice (Special Issue on Citizenship). 2016; 15(3); 315-329.
Gray, J., Kontos, P. Immersion, embodiment, and imagination: Moving beyond an aesthetic of objectivity in research-informed performance in health [31 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research. 2015; 16(2), Art. 29.
Kontos, P., Miller, K.L., Mitchell, G., Stirling-Twist, J. Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia. Dementia: The International Journal of Social Research and Practice. 2015; DOI: 10.1177/1471301215580895.
Kontos, P., Miller, K.L., Colantonio, A., Cott, C. Grief, anger, and relationality: The impact of a research based theatre intervention on emotion work practices in brain injury rehabilitation. Evaluation Review 2014; 38(1):29-67.
Kontos, P., Martin, W. Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care. Dementia: The International Journal of Social Research and Practice (Special Issue: Embodiment and Dementia) 2013; 12(3):288-302.
Kontos, P., Miller, K.L., Gilbert, J.E., Mitchell, G.J., Colantonio, A., Keightley, M.L., Cott, C. Improving client-centered brain injury rehabilitation through research-based theater. Qualitative Health Research 2012; 22(12):1612-1632.
Kontos, P. Alzheimer expressions or expressions despite Alzheimer’s?: Philosophical reflections on selfhood and embodiment. Occasion: Interdisciplinary Studies in the Humanities 2012; 4(May 31). Retrieved from http://arcade.stanford.edu/sites/default/files/article_pdfs/OCCASION_v04_Kontos_053112_0.pdf.
Email address: firstname.lastname@example.org
Location: Toronto, Canada
Senior Scientist, Toronto Rehabilitation Institute-University Health Network
Associate Professor, Dalla Lana School of Public Health, University of Toronto