Research
Learning Access: an investigation into female students' experiences of Attention Defiit Hyperactivity Disorder (ADHD)-related accommodations in Ontario universities
How have the care and work lives of Canadian parents with disabilities been affected by the COVID-19 pandemic? Little literature is available examining how disabled parents navigate their care/work lives within systems, and much of the research that does exist approaches disability through a deficit lens. Fewer studies still consider the context of the pandemic, despite it fundamentally altering the ways that many families and systems operate. Many of our institutions and their new policies failed to account for the lived reality of disabled bodyminds (Clare, 2017).
This paper presents findings from the SSHRC-funded Reimagining Care/Work Policies study (P.I. Andrea Doucet). Between January and March of 2023 we interviewed 4 individuals and 6 couples living in Canada about how they approached care/work, and what role disability played in these practices. We used narrative questions and an online Family Portrait (Doucet & Klostermann, 2023) as a visual aide. Participants were selected through the Familydemic survey (2021; 2022) where they indicated that a parent in the household experienced disability or serious mental or physical health condition. The interviews were transcribed and analyzed using narrative thematic analysis (Riessman, 2005) and collective reflexive analysis sessions (Doucet, 2018). Analysis centred on when and how parental disability might shape household care/work activities and the meanings that people gave to them, particularly how they experienced supports, stressors, and absences in their interactions with systems. We will highlight the implications of these findings for social workers, policy advocates, and educators.
Why do we talk about the work that caregivers do as a "burden" and how does this framework limit our responses? This paper critically reviews current literature on informal care and analyzes interview data from the Reimagining Care/Work Policies study (P.I. Andrea Doucet, funded by a SSHRC Partnership grant) from a disability justice lens. As Canadian social workers navigate a healthcare crisis and straining social safety net, care needs are increasingly being met by family members. What care is, who provides it, and what impact it has become an urgent focus for researchers. We conducted a review of research literature on care work and compared our findings from interviews with families with disabilities. The existing literature relies heavily on the concept of “caregiver burden”, a term that reduces informal care to a unilateral, inherently negative, and highly individualized act. This characterization does not reflect the multidimensionality, multidirectionality, and systemic nature of care that was reported by interview participants. The people we interviewed often varied in their descriptions of what care meant in their families and how it affected them, and highlighted the ways in which their care was shaped by their social context. Workplace policies and systemic gaps emerged as opportunities for potential change. We argue that collective care frameworks developed by disability activists, along with theories of relational interdependence from Indigenous scholars, provide a useful resource when thinking about who engages in care, what caregivers do, and how we can respond.
Other Conference Publications
Gibson, M.F., Monroe, H.E., Urquhart, B. (2024). Listening to neurodivergent women: Research findings to improve practice. [Conference Presentation]. Women In Mind. Ottawa, ON,
Canada.
Doucet, A., Klostermann, J., de Laat, K., Fisher, L., Foster, K., Gibson, M., livingstone, b., Cooper, J., Urquhart, B., & Kader, U. (2023). Care is Not a Tally Sheet: Reflections on the Care/Work Portrait as a Method for Rethinking and Remaking the Field of Gender Division of Domestic Labour. [Conference Presentation]. Canadian Sociological Association (CSA). Toronto, ON, Canada.
Gibson, M., livingstone, b., Cooper, J., & Urquhart, B. (2023). Absences and (re)articulations: 2SLGBTQ families and care/work. [Conference Presentation]. Canadian
Sociological Association (CSA). Toronto, ON, Canada.
Gibson, M., Urquhart, B., livingstone, B., Monroe, H.E., Sakamoto, I. (2023). An ethnographic investigation into discourse, practice, and identity. [Conference Presentation].
Canadian Association of Social Work Educators (CASWE). Toronto, ON, Canada.