Living in the Nexus of Disability and Caregiving: An African American Parental Caregiver's Critical Observations as a Folklorist

Author:

May-Machunda Phyllis M.1

Affiliation:

1. phyllis m. may-machunda is an independent folklorist/ethnomusicologist and Professor Emerita of American Multicultural Studies at Mesota State University Moorhead

Abstract

Abstract In this essay, I advance and elaborate upon three points and their relevance to folklore studies based on my experiences and fieldwork as a parent of a child with disabilities. First, I note the absence of narratives of many families of children with disabilities and foreground a concept of possible shared identity and embodied communication between parents and non- or partially verbal children. Second, I highlight autoethnographic and ethnographic stories that are created at the nexus of disability and caregiving that offer insight into narratives of caregivers of children with disabilities. Caregivers’ stories are mostly missing in folklore studies. These narratives can stand by themselves or be intertwined with the narratives of the children whom caregivers care for. Finally, I suggest ways that a theoretical frame of intersectionality can illuminate and provide nuance for better understanding the systemic complexities of the narratives of children's and their caregivers’ experiences of disability.

Publisher

University of Illinois Press

Reference45 articles.

1. The Compounding Effect of Race/Ethnicity and Disability Status on Children’s Health and Health Care by Geography in the United States

2. American Psychological Association. 2011. What Do Family Caregivers Do?https://www.apa.org/pi/about/publications/caregivers/faq/family.

3. Dis/ability Critical Race Studies (DisCrit): Theorizing at the Intersections of Race and Dis/ability;Annamma;Race Ethnicity and Education,2013

4. An Introduction to Race, Gender, and Disability: Intersectionality, Disability Studies, and Families of Color;Ben-Moshe;Women, Gender, and Families of Color,2014

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