Confronting Barriers to Equitable Care: A Qualitative Analysis of Factors That Inform People with Mobility Disabilities’ Decisions to Self-Advocate in the Context of Healthcare

Abstract

Background. One in 5 people in the United States live with disability; however, the public health needs of this community have been largely overlooked. Although U.S. law mandates the availability of accessible medical exam equipment, people with mobility disabilities (PWMD) frequently encounter barriers that require self-advocacy to receive basic primary care. Objective. The purpose of this study was to qualitatively explore the impact of healthcare access barriers—specifically, the experiences of the need to self-advocate and factors that inform decisions to make accommodation requests—for PWMD. Methods. Qualitative semistructured interviews were performed across two phases of data collection with each of the 6 participants. Interpretative phenomenological analysis was used to highlight the essence of participants’ experiences in making decisions to request healthcare accommodation. Results. Participants included a purposive sample of self-advocates with physical disabilities (3 men and 3 women). While individual approaches to self-advocacy varied, participants identified a process of “recognizing the normalization of disability discrimination and disability stigma” which necessitates the development of “agency in self-advocacy.” This process has a lasting impact on people that includes a shared embodied experience of disability, as well as a sense of empowerment based on their collective and individual identities. Conclusions. Findings have implications for supporting individual disability consumer advocacy efforts as well as the need to address the normalization of disability discrimination within healthcare systems levels.