ArticleFrontiers in sociology2025
Struggling for epistemic and emotional justice-a collaborative autoethnography of personal assistance.
Article in Frontiers in sociology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
The present article explores the intersection between disability and the emotions evoked by the experience of living with Personal Assistance (PA) in everyday life. The aim is to explore the emotion work around navigating the emotional and epistemic injustice faced by disabled people and their family members. As family members, mother and daughter, we are bound by our mutual experiences of being recipients of disability support. Research tends to focus on the professional gaze. Hence, the emotion management of disabled people living with disability support and their family members needs to be better understood. Life with PA provides a context that illustrates what epistemic and emotional injustice in various forms feels like. Our narratives may help to increase the understanding of the complex interplay between assistance coordinators, external personal assistants, young adults in need of PA, and family members involved in providing PA in everyday life. Focusing on our experiences of having linked lives underlines the entanglement of having different roles vis-a vis each other. Utilizing a collaborative autoethnographic approach we have identified three themes,
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