Ethical Inclusion and Participation of People with Disability in Research: Problematising Vulnerability

Abstract

Ethical principles and practices frequently support the position that people with disability are vulnerable. Vulnerability in research traditionally infers a need for protection from harm and raises questions over the person’s capacity to consent and engage. In addition, vulnerability in ethics infers a state of permanency and one that is all-encompassing for everyone within the vulnerable groups. This construction of vulnerability in effect legitimises the exclusion of people with disability from research or monitors and restricts how people with disability can engage in research. This results in an implicitly ableist environment for research. In this chapter, which has been led by researchers with disability, we argue that there is a critical need to move beyond a popularised social construction of vulnerability which serves to perpetuate barriers to including people with disability in research. Like all terms, the traditional and popular construction of vulnerability is open to reclaiming and reframing. Under this reconstruction, what is traditionally viewed as a limiting vulnerability can be owned, openly disclosed and accommodated. Following a pandemic-inspired ‘new normal’ that supports flexible workplace practices, and in accordance with UNCRPD goals of inclusive employment and reducing disability inequity, we argue that the pathway for people with disability as career researchers needs an ethical review and overhaul. We provide readers with a practical roadmap to advance a more inclusive academy for researchers with disability.

Citation

Mellifont, D., Watharow, A., Daniels-Mayes, S., Smith-Merry, J. and O'Donovan, M.-A. (2024), "Ethical Inclusion and Participation of People with Disability in Research: Problematising Vulnerability", Good, A., Elliott, I. and Mallon, S. (Ed.) Advances in Disability Research Ethics (Advances in Research Ethics and Integrity, Vol. 11), Emerald Publishing Limited, Leeds, pp. 71-90. https://doi.org/10.1108/S2398-601820240000011005