Infusing disability equity within rehabilitation education and practice: A qualitative study of lived experiences of ableism, allyship, and healthcare partnership

Abstract

BackgroundAddressing issues of diversity, equity, and inclusion (DEI) has become central in implementing inclusive and socially responsible rehabilitation education and clinical practice. Yet, the constructs of disability and d/Deaf identity and culture, as well as ableism and allyship are often overlooked. Or, these concepts are approached using outdated philosophical perspectives that pathologize disability and fail to prioritize the lived experiences, expertise, intersectionality, and self-identified needs of people with disabilities. A Critical Disability Studies (CDS) framework may provide a background for better understanding and responding to these issues through allyship.PurposeThis study employed a CDS framework to understand the lived experiences of ableism and allyship from faculty, staff, and students on University of Washington (UW) campuses who identify as d/Deaf, disabled/with a disability, or as having a chronic health condition.MethodsDuring 2020–2021, we conducted in-depth, semi-structured interviews and focus groups with 22 diverse undergraduate and graduate students, faculty, and staff with disabilities, one third who also identified as people of color. Encounters were audio-recorded, transcribed verbatim, and coded using constant comparison until themes emerged.ResultsFour major themes that emerged from the data are: (1) Ever-present ableism in healthcare, (2) Ableism at the intersections, (3) COVID: Surfacing ableism and expanding access, and (4) Disability allyship and healthcare partnership building. Experiences of ableism and allyship were identified at individual, group/unit, and institutional/systemic levels, though participants reported significantly fewer instances of allyship compared to experiences of ableism. Participants identified intersections between disability and other marginalized identities and juxtaposed the benefits of widespread adoption of many access-increasing practices and technologies due to the COVID-19 pandemic, while also highlighting ways in which the pandemic created new obstacles to inclusion.ConclusionsThis analysis provides insights into ways of implementing inclusive practices in rehabilitation education, practice, and beyond. Rehabilitation students, faculty, and staff may not be aware of how ableism affects their disabled peers or underpins their professional education. It is important to cultivate opportunities within professional education and clinical training to explicitly address our collective role in creating inclusive and accessible academic and healthcare experiences for our diverse community post COVID-19. Drawing on a CDS framework, the research team devised the mnemonic TRAC, which includes Training, Recognition and Representation, Attendance and Action, and Calling to account as strategic guidelines for operationalizing such opportunities.

Structural ableism in public health and healthcare: a definition and conceptual framework

“…The under-representation of disabled people within these fields relates in part to experiences of educational and workplace discrimination and inaccessibility that affect retention and advancement. 29 , 30 , 31 , 32 Additionally, disabled people are largely prohibited from participating in clinical research due to the inaccessibility of study designs and unjustified eligibility criteria that restrict their engagement. 33 Such exclusions may lead to misrepresentations about the needs of disabled people and contribute to the erasure of disability in health policy and resource allocation.…”

“… 7 , 12 Thus, before public health and healthcare institutions can effectively contribute to dismantling structural ableism in their fields, it is critical that members of these institutions commit to interrogating the ways that they continue to uphold ableism in their own communities. 29 , 30 , 31 , 32 This includes listening to the experiences of disabled people within their workforces and responding to their needs and leadership.…”

“…Finally, it is well-documented that academic and institutional ableism has contributed to significant under-representation of disabled researchers throughout academia, science, and health research. 15 , 29 , 31 Since disabled researchers receive only a small fraction of grant funding and have a lower success rate for funding conditional on applying, 28 it is plausible that research on structural ableism in public health and healthcare could be dominated by non-disabled researchers. For this reason, it is critical that researchers studying structural ableism acknowledge their positionality, partner with disabled scholars and community members in ways that meaningfully distribute resources and power, read and cite disability studies and disability justice scholarship, and work to disseminate research in ways that are accessible to disabled and deaf communities.…”

“…For this reason, it is critical that researchers studying structural ableism acknowledge their positionality, partner with disabled scholars and community members in ways that meaningfully distribute resources and power, read and cite disability studies and disability justice scholarship, and work to disseminate research in ways that are accessible to disabled and deaf communities. 15 , 31 , 32 …”

‘We only come from one perspective’: Exploring experiences of allies supporting expert by experience leadership in mental health education

“…Authentic allyship is considered a social and ethical responsibility (Hickey et al, 2022; Spanierman & Smith, 2017). Some authors believe it should be part of professional development in health services and academia (Arif et al, 2022; Bayard et al, 2022; Feldner et al, 2022). It is essential that allies support the activities of EBE rather than directing their content or focus (Happell & Scholz, 2018).…”