The challenge of social experience for children with disabilities

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Proceedings of the Herman Ostrow School of Dentistry Research Day 2014, Los Angeles, CA.

Abstract

Background: As children with disabilities approach participation, they encounter many challenges. Little has been done to understand the facilitators and barriers to social engagements in the daily lives of children and their families. Purpose: This investigation examines ethnographic data to understand the role of stigma in the development and social participation of African Americanchildren with disabilities and their families. Methods: For the present analysis, a subset of data has been drawn from a 15-year, three-phase, longitudinal ethnographic study collectively titled Boundary Crossings, a study of African American children with special health care needs, their families, and the practitioners who provided services.Results: In the observation of daily life experiences for children with special needs and their families, themes of marginalization based on unique qualities and abilities of the child and family emerged across families stories. While both individual and societal influences are apparent in this data, this analysis focuses on the joint actions and interactions between mothers and their children. Many families in this study narrated experiences of anticipating and/or encountering harsh criticisms and marginalization in social contexts. In some families, stigma was co-managed between the parents and the children. In others, children more autonomously attempted to manage constraints on participation. Implications related to identity, sense of self, stigma, and social engagements are discussed. Conclusion: Though stigma was not a term used by the families themselves, data analysis revealed ways the families understood and managed stigma. Profound examples emerged of how stigma affects family roles and how family roles affect stigma.

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presentation_location: Los Angeles, California, United States

Other

original_citation: Haywood, C.E., & Lawlor, M.C. (2014). Challenge of social experience for children with disabilities. Explorer, 6, 64.

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