A Misfits Perspective: The Lived Experiences of Mothers of Disabled Children
Loading...
Date
2021-04-27
Authors
Warden, Kathryn
Journal Title
Journal ISSN
Volume Title
Publisher
University of Oregon
Abstract
This dissertation explores the lived experiences of mothers of disabled children. Through qualitative methods, including 39 in-depth interviews and two years of participant observation, this project examines Latinx and white mothers’ perspectives on disability and lived experiences navigating spaces on behalf of and alongside their disabled children. The project employs a misfits framework, based on the theorizing of Rosemarie Garland-Thomson. Within a misfits perspective, disability arises when the environment does not support or sustain an individual’s embodiment. A social relational model of disability, misfits locates disability in the interaction between atypical bodies and inaccessible environments. The primary research questions developed through thematic analysis of the interview data, field notes, as well as the existing literature. This manuscript analyzes themes in mothers’ disability definitions and influences on the development of those definitions. Mothers understand disability as a natural manifestation of human biodiversity. Mothers perceive their disabled children as capable, valuable, and inherently the same as other, non-disabled children. According to these mothers, the problems of disability primarily arise because the world does not accept or support their children. Mothers develop these critical perspectives on disability through experiences of misfitting and fitting. A second research aim examines mothers’ advocacy experiences in the special education system. Mothers’ advocacy results from their children’s experiences of educational misfit. Mothers’ advocacy focuses on creating fit for their children. When mothers’ challenge educational norms, they experience misfit, themselves. This project also explores unique aspects of the misfit experienced by Latinx-immigrant mothers who advocate on behalf of their children in education, medical, and public disability systems. Characteristics of Latinx-immigrant mothers’ own non-majority embodiment may lead to misfit when environments are inaccessible or unsupportive.
By applying a misfits analysis, this dissertation seeks to contextualize mothers’ lived experiences and disability perspectives within a largely, inaccessible world. Mothers feel their children’s disability-based misfit and sometimes misfit themselves as they navigate hostile spaces. Findings demonstrate that mothers experience types of disablement, like misfit, similar to their disabled children. The manuscript concludes with scholarly and policy-based recommendations.