Intersectionality in the lives of people with intellectual disability and their caregivers: insights from a study on respite care in the South African context
Résumé
Background: This article advocates for an explicit intersectional lens when conducting research with people with intellectual disability (ID) in South Africa (SA). An intersectional lens spotlights how identity categories, power relations and structures, structural inequities, and disability converge to heighten disadvantage and marginalisation. Methods: This paper engages in a secondary analysis of a doctoral thesis on respite care for persons with ID in SA, a mixed-method, inclusive study entailing interviews, a policy analysis, and a national survey where the integrated data informed service considerations for this disability support service. For this paper, the thesis itself was re-analysed using framework analysis informed by intersectional theory. In doing so, the outputs were reconfigured to expose the intersections of privilege and marginalisation hiding within the broader narrative. Findings: Intersectionality reveals how people with ID and their caregivers in SA experience barriers to accessing quality respite care, affecting health and wellbeing. The lived experience of poor, black people with ID and, especially, their female caregivers is shaped by persisting racial disadvantage arising from interconnected structural inequities, including socio-economic inequality, geographic disparities, gendered care responsibilities, ableism, disablism, disability hierarchies, and cultural concerns, producing layered disadvantage in accessing responsive services. Intersectionality highlights the importance of focussing on the experience of people with ID who encounter particular marginalisations and disadvantage related to their disability. These insights inform recommendations to improve respite care for people with ID and their families. Implications: The paper illustrates the value of this lens, for which intersectional methodologies are needed and can be harnessed in future ID research in SA.
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