Disability Epistemology: Bridging the Gap Between Clinicians' Lived Experiences of Disability and Client-Centered Care

• In Event: 47.039 - Promoting Disability Equity Across Health Professions Education: Considering U.S. and Canadian Students' Lived Experiences

Abstract

Disability experiences are traditionally placed within a realm of medicalized categories of illness, health, and pathology. Disability studies scholars counter this approach by exploring “the social implications for bodies deemed excessively aberrant” (Snyder and Mitchell, 2001). Disability experience brings in valuable perspectives different from the positivist tradition that tend to discount experiential knowledge. Given the continuing underrepresentation of clinicians with disabilities in the healthcare workforce (DeLisa & Thomas, 2005; Meeks et al., 2018), the experiences of students and clinicians with disabilities can bring diverse perspectives (Iezzoni, 2016; Wong, 2016) and, ultimately, improve the quality of clinician–client interaction and healthcare outcomes.

Based on a larger grounded theory study of the experiences of students and clinicians with disabilities, this paper examines the role that clinicians’ disability plays in their interaction with clients/patients. Disability studies and the concepts of disability cultural competence (Garland-Thomson, 2017) and disability epistemology foreground the unique ways of knowing and being that clinicians with disabilities can offer. Wendell writes, people with disabilities “have access to realms of experience that our culture has not tapped…” (2006, p. 253). Living with non-typical conditions provokes unique learning, which would not have occurred without the disability (Gilson & DePoy, 2015).

The paper is based on a larger study that included semi-structured interviews with 55 students and clinicians with disabilities recruited from the health and human service programs (medicine, nursing, occupation therapy, physical therapy, social work) at three Canadian universities. The interviews focused on learning about the barriers and facilitators that the participants experience in their university and/or workplace setting. The interviews were analyzed using constant comparative methods to generate initial codes followed by focused coding to specify the properties and dimensions of a category (Charmaz, 2006).

The relevant themes identified during the analysis include Building Rapport Through Understanding, Advice Based on Experience, and Between Professionalism and Disability. Participants drew connection between their experiences of living with a disability and their ability to build understanding and rapport with their clients/patients. However, along with recognizing the positive aspects of disability for the interaction with clients/patients (in the first two themes), participants also provided a nuanced understanding of their ambivalent position as a clinician or a health student with a disability, especially as it relates to the notions of professionalism and person-centered care. Participants either feel that any reference to their personal experience makes them seem vulnerable or that it shifts the focus from the client/patient.

The lived experiences of students and clinicians with disabilities can inform policies toward creating a more inclusive environment for both students and clinicians with disabilities and their clients/patients. Specifically, the paper brings in disability studies scholarship built around the values of social justice and genuine inclusion of people with disabilities in higher education and the workforce. The findings show clinicians with disabilities often do not see their perspectives compatible with the healthcare culture. These findings emphasize the need for a deeper conversation to reconcile the value of experiential knowledge in the clinical practice with the principles of clinical care.

Authors

• Alfiya Battalova, The University of British Columbia

• Laura Yvonne Bulk, The University of British Columbia

• Laura E. Nimmon, The University of British Columbia

• Tal Jarus, University of British Columbia

• Rachelle Hole, University of British Columbia

• Terry Krupa

• Michael Lee

• Yael Mayer