Open Access Dissertation
Doctor of Philosophy (PhD)
Valerie Polakow, Ph.D., Co-Chair
Alane Starko, Ph.D., Co-Chair
Derrick Fries, Ph.D.
Sylvia Jones, Ph.D.
Individuals who are ascribed the label of disability must face the stigma and assumptions of inability that it carries, and those with intellectual and developmental disabilities (IDD) are subjected to speculation that calls into question their capacity for reason, reflection, and morality. The purpose of this research was to explore the perspectives and experiences of adults with IDD and their family members. This study primarily focused on the ways in which participants create meaning around community and relationships in addition to examining the factors that inhibit or encourage inclusion and accessibility.
This phenomenological study examined the perspectives of five individuals—three adults with IDD and two of their mothers. Audio-recorded interviews consisted of semi-structured questions that focused on experiences of social relationships, community, and inclusion. Interview guides and visual supports were made available to participants with IDD. Participants shared their stories of the ways in which interpretations of disability have framed their lives and their endeavors to find a place to belong. Thematic analysis identified the key findings that emerged from the narratives. Primary themes that emerged from the parents’ perspectives were (a) shifting expectations, (b) navigating supports and services, and (c) managing vigilance and fear. The primary themes from the narratives of the adults with IDD were (a) social isolation, (b) bullying, (c) opportunity for meaningful choice, and (d) defiance of expectations.
The narratives shared by the participants of this study illuminate our understanding of the ways in which individuals with IDD and their families experience disability, community, and exclusion. Recommendations include U.S. ratification of the United Nations Convention on the Rights of Persons with Disabilities, improved supports and services for adults with IDD with a focus on fostering rights awareness and self-advocacy skills, better coordination and communication among adult service providers, and improved access to information and resources for the families of adults with IDD. There is a great need for transformative actions and practices that foster inclusive community and create opportunities for challenging the stigma and ignorance around disability while promoting affirmation of the qualities and skills that individuals with disabilities display.
Wilson, Chloe, "Inclusion, community, and social relationships: A phenomenological study of the experiences of adults with intellectual and developmental disabilities" (2017). Master's Theses and Doctoral Dissertations. 910.