Narratives of Experience from Parents of Color of Youth with Disabilities

• In Event: Unsettling the Present: Multigenerational, Interdisciplinary Dialogues on the Past, Present, and Futures of Inclusive Education

Abstract

Objectives
Historically, studies of the parents of youth with disabilities followed the medical model of disability, centering biological deficits, burden, and grief. This emphasis belies the narrative of parents as resilient, agentic participants in their own experience, and has ignored the “socioculturally situated” nature of disability (Lalvani & Povere, 2013). Furthermore, the majority of parents studied have been white affluent parents, offering little insight about the experiences of families of color and a de-emphasis on racialized experience (Mulderink, 2020). Parents’ experiences can frame the landscape of policy and practice contextualizing implementation and impact.To draw future thinking wisdom from the voices of parents of color, we designed an inquiry exploring the following research questions: (1) How do the intersections of identity impact parents’ experiences raising children with a disability across the lifespan? (past and present) (2) What advice do parents of young people with disabilities representing racialized identities offer to other parents?
Theoretical Framework
Our asset-based, theoretical framework amplified family voice while challenging inequity. Yosso’s (2005) Community Cultural Wealth (CCW)Model examines the development and use of capital (familial, social, aspirational, linguistic, resistant and navigational) to foster preferred outcomes of schooling despite systemic inequities. Intersecting with CCW, a critical lens to interpret experience included the tenets of DisCrit theory (Annamma, et al., 2013). Interrogating intersectional experiences of racism and ableism as they intertwine and impact experience and action.
Methods and Data Sources
To gather narratives, we surveyed parents of youth with a range of disabilities and followed up with an interview using survey responses and a semi-structured interview protocol about experience with schooling, community, and support for their child across their lives to date. See Tables 1-3 for demographic information about parents and their children. We designed the study and interview protocol with a coalition, including parents of youth with disabilities of color (Author, 2025). We gathered 119 surveys followed by 28 interviews of parents. Interviews were completed by the authors and analyzed through multiple rounds of coding and discussion to identify themes.
Results
The history of parents’ experience with their child from birth to the time of the interview was captured through retrospective questions. Inviting parents to share advice, brought their experience into the future as wisdom to inform the next generation of parents. Themes included (1) valuing of family, (2) shifting cultural perspectives, (3) financial concerns as barriers (4) community and faith-based supports and (5) valuing of independent living and job opportunities (6) experiences of otherization and belonging.
Significance
Examining the ongoing and long-term impact of parent perspectives on the processes meant to prepare youth for entry to adult life are essential for understanding the best support for people of color with disabilities in their k-12 journey and beyond and transforming inclusive systems. Examining the experiences of parents of color and their approach to accessing services, information, and other sources of support are influenced by the mandates of education and disability law past, present, and future, impacting systems, individuals, and families.

Authors

• Tammy Ellis-Robinson, University at Albany - SUNY

• Elizabeth Slusarz, University at Albany - SUNY