(DIS4b) Sociology of Disability II

This session broadly explores the sociology of disability. Tags: Égalité et Inégalité, Handicaps, Santé et soin

Organizers: Chris Churchill, University of Lethbridge, Yiyan Li, University of Toronto; Chair: Karen Foster, Dalhousie University

Presentations

Margaret Oldfield, Independent

Promoting non-institutional living options for Canadians with dementia: A paradigm shift

Most Canadians do not want to live in nursing homes when they age (NIA, 2021); yet many end up there because of Canadian politicians’ reluctance to fund alternatives, in contrast to most OECD countries (Drummond, 2020). Non-institutional alternatives are cheaper, safer, and have higher rates of satisfaction (Estabrooks et al., 2020). We explore these alternatives in light of the ongoing paradigm shift in dementia care. Our work draws on tenets of critical disability studies and gerontological social work. We also draw on the concept of supported decision-making (Alzheimer Europe, 2017). This approach empowers people with cognitive impairments to preserve their agency, in contrast to the substitute decision-making that currently dominates in Canada. Although nearly all Canadians over 65 polled in 2021 (97%) reported not wanting to reside in nursing homes (NIA, 2021), little has been done to challenge the institutional model of dementia care: locked wards in facilities segregated by age and disability. The model is not only rife with problems but unanimously repudiated as a last resort and unimaginable end of life (Lévesque, 2022). Segregating disabled people, including those with dementia (Shakespeare et al., 2017), contravenes the United Nations Convention on Rights of Persons with Disabilities, a treaty that Canada signed. Yet institutional dementia care remains clouded by systemic ageism and ableism. Beginning in the 1950s, Canada’s deinstitutionalization movement (Panitch, 2008) created non-institutional alternatives that enabled younger people with cognitive impairments to live in the community with supports. Do elders with dementia not deserve the same? We provide evidence that the institutional model of dementia care harms Canadians with dementia. This harm is not only based on epidemiological evidence, but on the psychological and moral distress experienced by residents, staff, and family members. To remedy this harm and distress, we describe more humane alternatives for supporting Canadians with dementia, in three categories: (a) minimal in-home supports, (b) extensive domestic and medical in-home supports, and (c) out-of-home supports. This presentation fits the themes of Congress 2024 and CSA 2024. Despite disabled people being Canada’s largest minority group, at 27% (Statistics Canada, 2023), disability issues beyond basic accessibility are often ignored. The disability-rights movement began over 50 years ago. A newer social movement, opposing dementia stigma and led by people with the condition, began over 20 years ago. These anti-ableism and anti-ageism movements push the paradigm shift in how Canada serves its citizens with dementia. Together we can change our shared future—not just for the current elder generation but for generations to come, including ourselves.

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Non-presenting authors: Maude Lévesque, Université du Québec à Montréal

Michelle Owen, University of Winnipeg; Jeremy Wildeman, Canadian Centre for Housing Rights

A House Divided: Disabilities, Inequalities, and Shared Futures

Systemic inequality in housing remains a significant and neglected problem across Canada. The Government of Canada’s historic 2019 National Housing Strategy Act (NHSA) legislates the right to housing. As one of only a handful of countries with such legislation for housing, the NHSA sets Canada apart as a global normative leader. However, there is one significant barrier to achieving the right to housing in this country, namely the discrimination faced by disabled people when accessing and remaining in appropriate housing. Ensuring the right to housing implicates issues such as the availability of affordable and accessible housing, the supports required by people with disabilities to remain housed, the availability and appropriateness of income supports to sustain tenancy arrangements, as well as fair adjudicative processes surrounding evictions. To date, the barriers to the right to housing for disabled people have been largely unexplored, despite 27% of Canadians being disabled and the significant intersection between housing insecurity and disability. Through original research, including interviews with people with lived experience and service providers, and an expansive grey literature review, this presentation elucidates those barriers nationally, and provincially in Nova Scotia, Ontario, Manitoba, and British Columbia. The lack of attention given to this issue makes it difficult to ascertain why a significant proportion of people experiencing homelessness have disabilities. Our Social Sciences and Humanities Research Council (SSHRC) funded project ‘The Right to Housing for Tenants with Disabilities in Canada’ seeks to fill this empirical gap through an examination of the varying experiences of discrimination encountered by disabled Canadians and the strategies used to deal with these barriers. We aim to contribute to a research agenda concerning the right to housing for disabled people in Canada and how the ongoing experiences of discrimination and basic affordability are preventing people with disabilities from realizing their right to housing. We will do this by identifying the ways in which discrimination and the denial of appropriate housing can be changed through additional supports for people living with disabilities, as well as policy and legislative changes. Our project, and this presentation, focuses on the right to housing for disabled people and asks three broad research questions centered on the experience of discrimination by people with disabilities in the context of securing and maintaining appropriate housing. First, how do disabled people experience the right to housing across Canada? Second, what discriminatory barriers do people with disabilities face across Canada? Third, what supports, procedural or process changes, and revisions to laws, policies, and programs, will help disabled people overcome these barriers to the right to housing? These questions are being explored through emancipatory research, and purposeful partnerships between academic researchers in multiple disciplines and community organizations. The theoretical approaches taken by this research cross sectors and are deeply intersectional and interdisciplinary. This research promotes an understanding of the right to housing as described in Canadian and international law. It also adopts the social and human rights models of disability and explores the mechanisms of law and policy related to housing, disability, social justice, and the lived experience of marginalized and disadvantaged groups who experience discrimination. As such, our theoretical approaches are rooted in the ‘right to housing’ concept. This research also adopts a mixed methodology, and project activities form four overlapping strands to explore the right to housing for disabled people. We do not have any firm conclusions yet as we are in the preliminary stages of data collection and analysis. Thus far we have been focusing on network development, direction setting, knowledge exchange, and capacity-building. However, our literature reviews support our argument that Canadians with disabilities are discriminated against in terms of attaining and maintaining adequate housing. The narratives we gather through semi-structured interviews with people with lived experience of disability will enrich the literature. This presentation is highly relevant to both the theme of Sustaining Shared Futures, and the focus of the open session of the CSA Sociology of Disability Research Cluster on Disabilities, Equality, and Inequality. In this presentation we consider the sustainability of our shared futures in the context of disabilities and housing. The current situation is inequitable and must be challenged and changed. Canadians with disabilities have the right to housing.

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Non-presenting author: Jewelles Smith, Canadian Centre for Housing Rights; Kristen Hardy, University of Winnipeg and Brandon University; Ugonna Chigbo, University of Winnipeg

Karen Foster, Dalhousie University; Laura Fisher, Dalhousie University

Time and Agency in the Care/Work Narratives of Families with Disabilities

There is a large and well-established field of social scientific research that seeks to measure and make sense of how families balance the many and sometimes conflicting claims on their time, and how these claims, and their attendant responses, feelings, negotiations and strategies are gendered. Over time, the field has grown more sensitive to the diversity of families we can try to understand, and the complexity of how households divide up the work that keeps them running. Researchers have showed, for instance, that “time is not time is not time” (Doucet, 2022)--problematizing simplistic time-use calculations–and that gender differences in household and care work are not always the same as gender inequalities (Doucet, 1995). In this paper, we seek to add to this still-expanding field by contemplating how to make space for the positive and negative implications of disability–children’s and parents’--in our analysis of parents’ care/work narratives, with additional attention to how their care/work relations, and the control they have over them, may change and vary over time at multiple scales -- within a day, but also the life course (Elder, 1994). Like a growing number of researchers (Hanisch, 2013; Thomas, 2022), we seek to carve a space between the ‘deficit narrative’ approach that focuses attention on all the ways in which disability limits parents’ and children’s agency and flourishing, and a naive approach that ignores their challenges. Our more specific objectives are to explore the relationships between temporality (at multiple scales) and agency in disabled families’ stories, to help us understand care/work experiences in families with disabilities, and to point to helpful interventions or supports. To that end, we draw on 17 interviews from a larger Canadian cross-national project that includes a national survey (with almost 5000 participants) and a follow-up qualitative research project with selected participants from the survey (with 88 households and 155 participants) on gender divisions and relations between unpaid work and paid work in diverse families. Data collection utilized the Care/Work Portrait (Doucet and Klostermann, 2023), a visual participatory method for exploring how individuals and couples navigate and negotiate all the work that goes into running a household. Data analysis Team-based data analysis work used an adapted version of the Listening Guide approach to narrative analysis.

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Non-presenting authors: Andrea Doucet, Brock University