Abstracts
Résumé
À l’aide d’outils théoriques issus des études trans et des études sur le handicap/crip, nous reconceptualisons l’identité de soi dans le contexte de la démence. Nous démontrons que la majorité des recherches, des interventions et des discours sur la démence est axée sur le maintien du soi pré-démence. Nous soutenons que la contrainte à la continuité biographique nécessaire pour maintenir le soi pré-démence est fondée sur des formes imbriquées d’âgisme, de capacitisme et de cogniticisme et interagit avec ce que nous appelons le cisisme (le système d’oppression qui discrimine les personnes sur la base du changement) et ses composantes normatives, la cisnormativité* et la ciscognonormativité. Après avoir présenté une généalogie critique du terme cisnormativité*, nous revisitons la signification de ce concept et remobilisons ce dernier dans le contexte de la démence et démontrons son utilité pour critiquer la contrainte à la continuité biographique. À l’instar des verbes « queeriser » (queering) et « cripper » (cripping), nous proposons de transer (transing) la démence de manière à révéler une nouvelle conceptualisation d’un soi fluide et changeant plutôt qu’ancré dans de multiples oppressions.
Mots-clés :
- personnes trans et non binaires,
- démence,
- cisnormativité,
- capacitisme,
- âgisme,
- identité de soi
Abstract
Using theoretical tools from trans studies and disability/crip studies, we reconceptualize the self in the context of dementia. We illustrate that most dementia discourse, scholarship and intervention emphasize a maintenance of the pre-dementia self. We argue that the compulsory biographical continuity needed to maintain the pre-dementia self is based on interlocking forms of ageism, ableism, and cogniticism, and interacts with what we call cisism (the oppressive system that discriminates against people on the basis of change) and its normative components, cisnormativity* and ciscognonormativity. After providing a critical genealogy of the term cisnormativity*, we resignify and redeploy this concept in the context of dementia, demonstrating how it is useful for critiquing compulsory biographical continuity. Following the verbs queering and cripping, we propose a transing of dementia that leads to a new conceptualization of the self that is fluid and changing, rather than one anchored in multiple oppressions.
Keywords:
- trans and non-binary people,
- dementia,
- cisnormativity,
- ableism,
- ageism,
- selfhood
Appendices
Bibliographie
- Ansara, G. Y. et Hegarty, P. (2012). Cisgenderism in psychology: Pathologising and misgendering children from 1999 to 2008. Psychology & Sexuality, 3(2), 137-160.
- Aubrecht, K. et Keefe, J. (2016). The becoming subject of dementia. Review of Disability Studies: An International Journal, 12(2 & 3), 1-19.
- Baldwin, C. (2008). Narrative, citizenship and dementia: The personal and the political. Journal of Aging Studies, 22(3), 222-228.
- Baldwin, C. et Greason, M. (2016). Micro-citizenship, dementia and long-term care. Dementia, 15(3), 289-303.
- Baril, A. (2019). Gender identity trouble: An analysis of the underrepresentation of trans* professors in Canadian universities. Chiasma, 5, 90-128.
- Baril, A. (2015). ‘How dare you pretend to be disabled?’ The discounting of transabled people and their claims in disability movements and studies. Disability & Society, 30(5), 689-703.
- Baril, A. (2013). La normativité corporelle sous le bistouri : (re)penser l’intersectionnalité et les solidarités entre les études féministes, trans et sur le handicap à travers la transsexualité et la transcapacité (publication 1503857676) [thèse de doctorat, Université d’Ottawa]. ProQuest Dissertation and Theses.
- Baril, A. (2009). Transsexualité et privilèges masculins. fiction ou réalité? Dans L. Chamberland, B.W. Frank et J. Ristock (dir.), Diversité sexuelle et constructions de genre (p. 263-295). Presses de l’Université du Québec.
- Baril, A., Silverman, M., Gauthier, M.-C. et Lévesque, M. (2020). Forgotten wishes: End-of-life documents for trans people with dementia at the margins of legal change. Canadian Journal of Law and Society, 35(2), 367-390.
- Baril, A. et Silverman, M. (2019). Forgotten lives: Trans older adults living with dementia at the intersection of cisgenderism, ableism/cogniticism and ageism. Sexualities, Online Firsthttps://doi.org/10.1177/1363460719876835
- Bartlett, R. et O’Connor, D. (2010). Broadening the dementia debate. The Policy Press.
- Bartlett, R. et O’Connor, D. (2007). From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies, 21(2), 107-118.
- Bauer, G. R., Hammond, R., Travers, R., Kaay, M., Hohenadel, K. M. et Boyce, M. (2009). ‘I don't think this is theoretical; this is our lives:’ How erasure impacts health care for transgender people. The Journal of the Association of Nurses in AIDS Care,20(5), 348-361.
- Beard, R. (2017). Dementia and the privilege of growing old. Dementia, 16(6), 685-688.
- Beard, R. et Fox, P. (2008). Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss. Social Science & Medicine, 66, 1509-1520.
- Behuniak, S. (2011). The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing & Society, 31, 70-92.
- Bettcher, T. M. (2014). Trapped in the wrong theory: Rethinking trans oppression and resistance. Signs, 39(2), 383-406.
- Boyle, G. (2014). Recognising the agency of people with dementia. Sociology, 29(7), 1130-1144.
- Brannelly, T. (2011). Sustaining citizenship: People with dementia and the phenomenon of social death. Nursing Ethics, 18(5), 662–671.
- Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167-182.
- Buse, C. et Twigg, J. (2018). Keeping up appearances: Family carers and people with dementia negotiating normalcy through dress practice. Dans G. Thomas et D. Sakellariou (dir.), Disability, Normalcy, and the Everyday (p.17-38). Routledge.
- Buse, C. et Twigg, J. (2016). Materialising memories: Exploring the stories of people with dementia through dress. Ageing and Society, 36(6), 1115-1135.
- Buse, C. et Twigg, J. (2014). Women with dementia and their handbags: Negotiating identity, privacy and ‘home’ through material culture. Journal of Aging Studies, 30, 14-22.
- Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of discrimination doctrine, feminist theory and antiracist practice. University of Chicago Legal Forum, 89, 139-167.
- Dewing, J. (2007). Personhood and dementia: Revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing, 3(1), 3-13.
- DiPietro, P. J. (2016). Of Huachafaria, Asi, and M’e Mati: Decolonizing transing methodologies. TSQ: Transgender Studies Quarterly, 3(1-2), 65-73.
- Dupuis, S. L., Kontos, P., Mitchell, G., Jonas-Simpson, C. et Gray, J. (2016). Re-claiming citizenship through the arts. Dementia, 15(3), 358-380.
- Dresser, R. (1995). Dworkin on dementia: Elegant theory, questionable policy. The Hastings Center Report, 25(6), 32-8.
- Dworkin, R. (1986). Autonomy and the demented self. The Milbank Quarterly, 64(Suppl. 2), 4-16.
- Enke, A. F. (2012). The education of little cis. Cisgender and the discipline of opposing bodies. Dans A. F. Enke (dir.), Transfeminist Perspectives In and Beyond Transgender and Gender Studies (p. 60-77). Temple University Press.
- Fabbre, V. D. (2015). Gender transitions in later life: A queer perspective on successful aging. The Gerontologist, 55(1), 144-153.
- Fazio, S., Pace, D., Flinner, J. et Kallmyer, B. (2018). The fundamentals of person-centered care for individuals with dementia. The Gerontologist, 58(S1), S10-S19.
- Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.
- Fricker, M. et Jenkins, K. (2017). Epistemic injustice, ignorance and trans experiences. Dans A. Garry, S. Khader et A. Stone (dir.), Routledge Companion to Feminist Philosophy (p. 268-278). Routledge.
- Gray, J., Dupuis, S., Kontos, P., Jonas-Simpson, C. et Mitchell, G. (2020). Knowledge as embodied, imaginative and foolish enactment: Exploring dementia experiences through theater. Forum: Qualitative Social Research, 21(3), 1-21.
- Habron, J. (2013). ‘A conversation without words’ – Reflections on music therapy and dementia. Dementia, 12(1), 3-6.
- Haeusermann, T. (2019). Forced continuity: Explorations of biographical narratives in dementia care. Journal of Aging Studies, 49, 1-8.
- Harnett, T. et Jönson, H. (2017). “They are different now” – Biographical continuity and disruption in nursing home settings. Journal of Aging Studies, 42, 1-8.
- Hayward, E. et Weinstein, J. (2015). Introduction: Tranimalities in the age of trans* life. TSQ: Transgender Studies Quarterly, 2(2), 195-208.
- Higgs, P. et Gilleard, C. (2016). Personhood, identity and care in advanced old age. Policy Press.
- Hill Collins, P. (2000). Black feminist thought: Knowledge, consciousness, and the politics of empowerment (2eéd.). Routledge.
- Jaworska, A. (1999). Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs, 28, 105-138.
- Kafer, A. (2013). Feminist, queer, crip. Indiana University Press.
- Kia, H. (2019). (In)visibilities that vary: The production of aging lesbian, gay, bisexual, transgender, and queer subjects in chronic care. Theory In Action, 12(3), 1-20.
- King, A. (2016). Queer(y)ing dementia – Bringing queer theory and studies of dementia into dialogue. Dans S. Westwood et E. Price (dir.), Lesbian, gay, bisexual, and trans individuals living with dementia. Concepts, practice and rights (p. 51-64). Routledge.
- Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press.
- Kontos, P. (2006). Embodied selfhood. An ethnographic exploration of Alzheimer’s disease. Dans A. Leibing et L. Cohen (dir.), Thinking about dementia: Culture, loss, and the anthropology of senility (p. 195-217). Rutgers University Press.
- Kontos, P. C. (2005). Embodied selfhood in Alzheimer’s disease: Rethinking person-centered Care. Dementia, 4(4), 553-570.
- Kontos, P. C. (2004). Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing & Society, 24, 829-849.
- Kontos, P. C. et Naglie, G. (2007). Expressions of personhood in Alzheimer’s disease: An evaluation of research-based theatre as a pedagogical tool. Qualitative Health Research, 17(6), 799-811.
- Koyama, E. (2002). Cissexual/Cisgender. Decentralizing the Dominant Group. https://www.feminism.org/interchange/2002/20020607-wmstl.html
- McRuer, R. (2003). As good as it gets: Queer theory and critical disability. GLQ: A Journal of Lesbian and Gay Studies, 9(1-2), 79-105.
- Noble, B. (2012). Trans. Panic. Some thoughts towards a theory of feminist fundamentalism. Dans A. F. Enke (dir.), Transfeminist perspectives in and beyond transgender and gender studies (p. 45-59). Temple University Press.
- Nordmarken, S. (2019). Queering gendering: Trans epistemologies and the disruption and production of gender accomplishment practices. Feminist Studies, 45(1), 36-66.
- O’Connor, D. (2019). Practising social citizenship in a context of compromised decision-making capacity: Realizing and protecting human rights. Elder Law Review, 12(1), [lvi]-[lxv].
- Overall, C. (2009). Sex/gender transitions and life-changing aspirations. Dans L.J. Shrage (dir.), “You’ve changed”: Sex reassignment and personal identity (p. 11-27). Oxford University Press.
- Parfit, D. (1984). Reasons and persons. Oxford University Press.
- Pyne, J. (2011). Unsuitable bodies: Trans people and cisnormativity in shelter services. Canadian Social Work Review, 28(1), 129-137.
- Radi, B. (2019). On trans* epistemology. Critiques, contributions, and challenges. TSQ: Transgender Studies Quarterly, 6(1), 43-63.
- Riggs, D. W., Pearce, R., Pfeffer, C. A., Hines, S., White, F. et Ruspini, E. (2019). Transnormativity in the psy disciplines: Constructing pathology in the Diagnostic and Statistical Manual of Mental Disorders and Standards of Care. American Psychologist, 74(8), 912-924.
- Sabat, S. R. et Harré, R. (1992). The construction and deconstruction of self in Alzheimer’s disease. Ageing & Society, 12, 443-461.
- Sandberg, L. J. et King, A. (2019). Queering gerontology. Dans D. Gu et M. E. Dupre (dir.), Encyclopedia of Gerontology and Population Aging (p. 1-7). Springer.
- Sandberg, L. (2018). Dementia and the gender trouble?: Theorising dementia, gendered subjectivity and embodiment. Journal of Aging Studies, 45, 25-31.
- Sandberg, L. et Marshall, B. (2017). Queering aging futures. Societies, 7(21), 1-11.
- Sandberg, L. (2013). Affirmative old age: The ageing body and feminist theories on difference. International Journal of Ageing and Later Life, 8(1), 11-30.
- Sandahl, C. (2003). Queering the crip or cripping the queer? Intersections of queer and crip identities in solo autobiographical performance. GLQ: A Journal of Lesbian and Gay Studies, 9(1-2), 25-56.
- Serano, J. (2007). Whipping girl. A transsexual woman on sexism and the scapegoating of femininity. Seal Press.
- Shakespeare, T., Zeilig, H. et Mittler, P. (2019). Rights in mind: Thinking differently about dementia and disability. Dementia, 18(3), 1075-1088.
- Shrage, L. J. (2009). Introduction. Dans L. J. Shrage (dir.), “You’ve changed”: Sex reassignment and personal identity (p. 3-10). Oxford University Press.
- Stryker, S., Currah, P. et Moore, L. J. (2008). Introduction: Trans-, Trans, or Transgender? WSQ: Women’s Studies Quarterly, 36(3-4), 11-22.
- Thomas, C. et Milligan, C. (2018). Dementia, disability rights and disablism: Understanding the social position of people living with dementia. Disability & Society, 33(1), 115-131.
- Tompkins, A. (2014). Asterisk. TSQ: Transgender Studies Quarterly, 1(1/2), 26-27.
- Toze, M. (2019). Developing a critical trans gerontology. British Journal of Sociology, (70)4, 1490-1509.
- Twigg, J. et Buse, C. E. (2013). Dress, dementia and the embodiment of identity. Dementia, 12(3), 326-336.
- Ward, R. et Price, E. (2016). Reconceptualising dementia: Toward a politics of senility. Dans S. Westwood et E. Price (dir.), Lesbian, gay, bisexual, and trans individuals living with dementia. Concepts, practice and rights (p. 65-77). Routledge.
- Ward, R., Campbell, S. et Keady, J. (2014). ‘Once I had money in my pocket, I was every colour under the sun’: Using ‘appearance biographies’ to explore the meanings of appearance for people with dementia. Journal of Aging Studies, 30, 64-72.
- Ward, R. et Campbell, S. (2013). Mixing methods to explore appearance in dementia care. Dementia. 12(3), 337-347.
- Witten, T. M. (2017). Health and well-being of transgender elders. Annual Review of Gerontology and Geriatrics, 37(1), 27-42.