‘It is like being put through a blender’: inclusive research in practice in an Australian university

Abstract

How can university-based researchers committed to a position of solidarity with, and activism alongside, people with disabilities maintain such a stance in the metric-driven environment of the modern university? How can the academy ensure there is the opportunity for people with disabilities to contribute to production of the knowledge in which they have most at stake, in a wider environment where access to basic services for people with disabilities is precarious? In this paper we draw on our experience as a team of university-and community-based researchers with and without disabilities to reflect on these questions, using a framework of reflexive solidarity to consider practical strategies for strengthening the relationship between disability activism and the academy.

Enabling Action: Reflections upon Inclusive Participatory Research on Health with Women with Disabilities in the Philippines

“…The benefits of disability-inclusive CBPR can be realized even in settings of poverty, prejudice, and challenging political circumstances. However, there are costs and challenges inherent in such an approach, disproportionately born by co-researchers when exploring sensitive topics with peers (Evans, 2016;Vaughan et al, 2019). Co-researchers can work with members of their communities to generate rich, impactful data about difficult issues, but this can also lead to co-researchers experiencing vicarious trauma and distress (Burke, le May, K eb e, Flink, & van Reeuwijk, 2018).…”

“…However, community-based participatory approaches also have the potential to benefit some community members while excluding others; to reinforce inequalities, discrimination, and prejudice within communities; and to lead to unanticipated burdens for some. A framework of reflexive solidarity supports critical reflection upon the distribution of costs, benefits, and responsibilities for action among the diverse actors involved in CBPR projects (Vaughan et al, 2019).…”

“…Many of our team, both women with disabilities and team members without disabilities, reported emotional and psychological “costs” associated with W‐DARE. Recognizing and addressing these is important within an ethical and analytical framework of reflexive solidarity (Davis & Vaughan, 2018; Vaughan et al, 2019).…”

Participatory Research in Disability in Low- and Middle-Income Countries: What have we Learnt and what Should we Do?

“…An additional issue in research in LMICs is that not only does the power dynamic have to be overcome between the academic and the non-professional disabled researcher, but also between people from LMIC and high-income settings if researchers from both contexts are included in the study. Different actors may also experience different motivations and pressures (Vaughan et al 2019). For instance, academics are under pressure to publish and gain recognition in the university and from other academics.…”

“…Of course, non-disabled researchers should be encouraged to reflect on their position, power and attitudes towards disabled researchers, making sure that they neither over-or under-estimate the abilities and skills of a disabled co-researcher (Callus 2019). Perhaps what is important is a commitment to solidarity and mutual support and cooperation towards a common goal (Vaughan et al 2019) or co-produced research, rather than necessarily on the achievement of emancipatory research. This solidarity is to respect that '…working in partnership meant doing things together (reading, writing, talking) and doing things separately in tasks allocated according to people's strengths, knowledge or interests' (Nind 2017).…”