Rights to Accommodation in Healthcare: Self-Advocacy Experiences of People with Disabilities

Background – One in 5 people living in the United States have a disability. Even with the existence of civil rights legislation, this large minority group experiences socially constructed barriers to participating in every aspect of life – including accessing basic health services. To achieve full and equal access to healthcare, disabled persons must self-advocate for accommodations. There is limited understanding of how people ascribe meaning to their experiences of healthcare access barriers or how these experiences inform people’s decisions to self-advocate. Therefore, the purpose of this study was to explore the meaning that barriers to healthcare have for people with mobility impairments as well as the personal and contextual factors that influence decisions to self-advocate for accommodation. Methods – Interpretive Phenomenological Analysis (IPA) was used to explore the meanings people construct about their experiences of barriers to healthcare and self-advocacy. Participants included a purposive sample of 6 self-advocates who use wheelchairs for home and community mobility. Data were collected using IPA approaches via a series of 2 semi-structured individual interviews. Analysis was inductive and iterative using critical disability theories and the social model of disability to highlight the essence of participants’ experiences in decisions to request healthcare accommodation. To ensure trustworthiness of study findings, numerous strategies, including member checking, peer examination, and reflexivity, were integrated into the study design. Findings: While individual approaches to self-advocacy varied, participants all identified a process of ‘recognizing 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 as disabled people. Findings have implications to support individual consumer advocacy efforts as well as the need to address the normalization of disability discrimination within healthcare at system levels.