Disability and Family Care Work over the Life Course

As rates of disability have risen over the last decade for all age groups, families have taken on more care responsibilities. Current theoretical frameworks of disability and care work are largely unconnected, limiting the ability of researchers to account for experiences of care work and receipt. How can sociologists blend these disparate theoretical and empirical literatures to develop a more comprehensive understanding of care work in the context of disability? This chapter proposes the Life Course Disability Care Work Integrated Model (LCDCW) as a potential theoretical framework informed by life course theory, a sociopolitical model of disability, and theories of care work that could unite the literatures. The model enables researchers to identify overlapping and unique structural and interpersonal barriers to care for care workers and care recipients in the context of disability. The chapter then reviews the empirical literature on people’s experiences with disability receiving and providing family care to highlight the framework’s usefulness, emphasizing the unique and shared contexts that shape care relationships and the problems that arise therein. The empirical literature review identifies that people with disability are providers and recipients of care, an essential link between disability and care work literatures. The conclusion summarizes the main contributions of the review, highlights existing gaps in the literature and opportunities for future research, and illustrates how disability and family care work scholarship can influence disability-related policy and programs.