Interrogating Ableism in Institutional Review Boards With Disability Studies and Critical Qualitative Inquiry Practices

• In Event: Addressing Intersecting Oppressions in Institutional Review Board Processes: Constraints, Strategies, and Future Directions

Abstract

Objectives
This paper considers the researcher’s experiences with IRBs and research that included disabled people as co-researchers. Using duoethnography the author engaged in dialogue about these experiences (Author et al., 2016). Critical, qualitative inquiry practices that center disability and disabled researchers (Author et al., 2018) are positioned as a valuable framework to reimagine the work of IRBs related to disability and research.

Theoretical Framework
Critical, qualitative inquiry that centers disabled bodyminds (Price & Kerschbaum, 2016) articulate the “…legitimization and privileging of certain methodologies, but also (and perhaps more so), the ableism that is built into procedures created to ‘protect’ those that they discriminate against” (Author et al., 2016). Using Author et al. (2018, 2019) as a guiding framework, this paper turns inside-out taken for granted ableism within the IRB process and provides questions that can guide the radical reconsideration of IRBs.

Method
An interrogation of ableist norms associated with disability and IRB processes is provided through a brief examination of relevant, interdisciplinary literature. This gives context to my argument about the status quo related to IRBs, disability, and ableist practices are cloaked in benevolence. Reclaiming (Linton, 1998) and centering disability (Kerschbaum & Price, 2017) are positioned as viable and necessary to recast the place of disability with institutional review practices.

Data Sources
This paper utilizes the author’s previous experiences with IRBs and disabled co-researchers to consider the reliance on ableist “ways of knowing” (Ware, 2001) about disability embedded within IRB processes and the so-called “protective” mechanisms of the IRB. This paper uses descriptions of the reification of “intellectual disability as a self-fulfilling way of being…as if this is an unquestioned “truth” about her being in the world, versus a constructed phenomenon” (Author et al., 2016) with a brief, critical literature review (using search terms “disability” and “institutional review board”) to characterize the interdisciplinary critique of any critical understanding of disability within IRBs.

Results
Milligan et al. (2019) argued for the legal and ethical responsibility of IRBs to address equitable and accessible research practices for researchers with and without disabilities. Their search of 55 universities IRB policies and documents demonstrated no consideration of access practices, thus reflecting the lack of consideration of disabled researchers within “who counts” as part of the research community. The argument made here aligns with these conclusions, asserting the “protective practices” of IRBs actually serve to refuse participation of many disabled researchers and participants.

Scholarly Significance
Emerging bodies of work have articulated varied forms of rampant ableism and intersecting forms of oppression within the academy (Dolmage, 2017; Kerschbaum et al., 2017; Kim & Acquino, 2017). This paper extends these interdisciplinary literatures by deconstructing the place of intellectual disability and researchers labeled as such within the IRB process (Author et al., 2016). This paper uses a framework that centers disabled bodyminds to provide some potential (and potentially radical) reconsiderations of IRB practices related to individuals historically deemed “vulnerable” and whose participation remains absent or on the margins and proposes questions that guide this process (Author et al., 2019).

Author

• Emily A. Nusbaum, Mills College