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Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review

Author

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  • Juan Andrés Pino-Morán

    (Instituto de Ciencias de la Salud, Universidad de O’Higgins, Rancagua 2820000, Chile
    Millennium Nucleus Studies on Disability and Citizenship (DISCA), Rancagua 2820000, Chile
    Grupo de estudios críticos de la discapacidad (CLACSO), Buenos Aires C1101AAX, Argentina)

  • Pía Rodríguez-Garrido

    (Instituto de Ciencias de la Salud, Universidad de O’Higgins, Rancagua 2820000, Chile
    Millennium Nucleus Studies on Disability and Citizenship (DISCA), Rancagua 2820000, Chile
    Women, Health and Ethics Study Group, University of Barcelona, 08907 Barcelona, Spain
    Laboratório de Estudos Sociais sobre o Nascimento, nascer.pt, Instituto Universitario de Lisboa, 1649-026 Lisboa, Portugal)

  • María Soledad Burrone

    (Instituto de Ciencias de la Salud, Universidad de O’Higgins, Rancagua 2820000, Chile)

Abstract

Background: Since the 1960s, the Independent Life Movement has demanded personal assistance as a right for people with disabilities to access autonomy. In turn, feminist movements have shown a special concern for the care and profile of the providers. Both postures have created tensions around the provision of personal assistance and care for people with disabilities. Aim: To know and analyze the scientific evidence regarding approaches to personal assistance and care for people with disabilities. Methods: An Integrative Literature Review using five databases: Dialnet, Scielo, PubMed, Scopus, and Web of Science. The Boolean combinations were: “Personal assistance AND disability”; “Personal assistance AND care AND disability”; “Care AND disability” in English, and “Asistencia personal AND discapacidad”; “Asistencia personal AND cuidados AND discapacidad”; “Cuidados AND discapacidad” in Spanish. A total of 31 scientific articles were obtained. A content analysis was then, with five analysis dimensions emerging. Results: The articles approached the positive aspects of personal assistance. Others established the need for more resources in order to not be an exclusive reality for developed countries. Profiles were made of racialized, young, migrant women as the identity behind (informal) care. From the perspective of a feminist disability care ethic, new forms of providing care are proposed, by changing the focus from individual and family responsibility, towards a social and collective focus. Conclusion: The evidence analyzed considers various dimensions of the epistemo-political tension between personal assistance and care. The meeting point between both perspectives is interdependence and autonomy; on the one side, for people with disabilities, and on the other, for the women profiled as the main caregivers.

Suggested Citation

  • Juan Andrés Pino-Morán & Pía Rodríguez-Garrido & María Soledad Burrone, 2023. "Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review," IJERPH, MDPI, vol. 20(2), pages 1-21, January.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:2:p:1366-:d:1032992
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    References listed on IDEAS

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    1. Ulrika Järkestig Berggren & Ann-Sofie Bergman, 2022. "Whether Disabled Parents Receive Personal Assistance for Parenting and the Consequences for Children—An Interview Study," IJERPH, MDPI, vol. 19(6), pages 1-10, March.
    2. Christoph Tschanz, 2018. "Theorising Disability Care (Non-)Personalisation in European Countries: Comparing Personal Assistance Schemes in Switzerland, Germany, Sweden, and the United Kingdom," Social Inclusion, Cogitatio Press, vol. 6(2), pages 22-33.
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