Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Dr. Debbie Laliberte Rudman

Abstract

Women with multiple sclerosis (MS) face a number of challenges negotiating and maintaining work, and are at risk for involuntary retirement and associated consequences. Few studies have positioned involuntary retirement and such consequences in socio-political contexts or examined their implications in women’s lives. This study critically examines the socio-political production and lived consequences of involuntary retirement for women with MS within the contemporary context of Southwestern Ontario. Employing critical narrative inquiry, informed by critical life course theory and disability studies perspectives with an intersectional lens, narratives of work and retirement were co-constructed with five women with MS who self-identified as retired. Four main themes evolved from critical narrative analysis, including: negotiating the disconnect between retirement as imagined, and retirement as lived; the production of consequences in navigating ableist environments requiring certainty and the intersection of bodily and financial uncertainty; the failure of practices, systems and policies to understand the complex, intersectional reality of women with MS, and the navigation of identity tensions; and filling the gap. These themes reveal various dimensions of the socio-political shaping of involuntary retirement, generating insights regarding how stigma and marginalization shape if and how women navigate workplace accommodations; problematics related to the conceptualization of disability embedded in provincial and federal disability policies and benefit programs; and implications of the absence of an intersectional lens within policies. In relation to the lived consequences of involuntary retirement, these thematic findings are drawn upon to point to the utility of precarity as a lens to examine experiences of instability, unpredictability and uncertainty amongst women with MS. The discussion also highlights how existing social policies and systemic discrimination create the necessity of re-imagining idealized retirements, as well as how the lives of the participants became increasingly more precarious after involuntary retirement given the downloading of responsibilities to manage gaps in existing systems and structures. This thesis responds to a number of important gaps by critically and qualitatively exploring involuntary retirement for women with MS in Ontario, Canada to provide rich accounts of shaping forces and lived consequences produced.

Summary for Lay Audience

Canada has the highest prevalence of multiple sclerosis (MS) in the world. Women with MS experience difficulties managing and keeping employment which can lead them to retire involuntarily. There has been little research that has addressed what leads women with MS to retire involuntarily or the resulting consequences. This work is especially important given that women face higher rates of MS than men in Canada. This study looks critically at how social and political forces contribute to involuntary retirement and produce consequences for women with MS in Southwestern, Ontario. Five narratives, or storied accounts, were created together with women with MS who identified themselves as retired. Four main themes emerged including: negotiating the disconnect between retirement as imagined, and retirement as lived; the production of consequences in navigating ableist environments requiring certainty and the intersection of bodily and financial uncertainty; the failure of practices, systems and policies to understand the complex, intersectional reality of women with MS, and the navigation of identity tensions; and filling the gap. These themes demonstrate how social and political factors shape involuntary retirement and provide insight around how stigma and discrimination impact if and how women access necessary accommodations in the workplace; problems with how disability is thought about in provincial and federal policies and benefit programs; and the consequences if policies only focus on disability and ignore other aspects of individuals lives. Additionally, in relation to the consequences of involuntary retirement, precarity can be a useful lens to understand experiences of unmet needs and uncertainty in participant’s lives over time. The discussion also points to how discrimination within existing policies and systems led participants to have to re-imagine what their retirement would be like, how that is different from what they imagined it would be, and how they are often left to find solutions to problems created by systems and structure that do not meet their needs. This thesis responds to a number of important gaps identified in the literature.

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