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

• Published in: The Journal of American folklore Vol. 137; no. 545; pp. 354 - 366
• Main Author: May-Machunda, Phyllis M
• Format: Journal Article
• Language: English
• Published: Columbus American Folklore Society 22.03.2024; American Folklore Society, Inc
• Subjects: African Americans; Autoethnography; Caregivers; Children with disabilities; Disability; Disability discrimination; Disabled children; Employment; Families & family life; Family; Flexibility; Folklore; Narratives; Parent-child relations; Parenting; Parents & parenting; Pediatrics; People with disabilities; Restaurants; Training; New York
• ISSN: 0021-8715; 1535-1882
• DOI: 10.5406/15351882.137.545.08

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.