"Wounds of Regret": Critical Reflections on Competence, "Professional Intuition," and Informed Consent in Research with Intellectually Disabled People

Chelsea Temple Jones

Abstract


There is an increased interest in including people with intellectual disability labels in social science research. The ethical conundrums involved in doing so are far-reaching, and labelled people remain chronically excluded from knowledge production on the basis of medicalized conceptions of competence commonly espoused by research ethics boards (REB). Here, I critically reflect on my experience making strategic decisions about accessing a writing group made up of labelled adults for my doctoral research. I respond to Kate Holland's 2007 question: "whose interests are served by current ethics review standards and what do they exclude?" (p. 904) by juxtaposing current ethical standards of critical disability studies with my REB's concerns about three issues: prospective participants' competence; their cognitive abilities; and a lengthy recruitment timeline. My reflections on these issues speak to feelings of regret and resilience, and what it can mean to take lessons from engaging in institutional ethics in an unsatisfactory way. This account offers snapshots of decisions leading up to a research project, and the ways in which ethics review frameworks remain rooted in biomedical epistemological biases that serve outsider researchers and exclude labelled people from research about themselves.



Keywords


competence; relational ethics; institutional ethics; intellectual disability; informed consent

Full Text:

HTML


DOI: http://dx.doi.org/10.18061/dsq.v41i2.6869

Copyright (c) 2021 Chelsea Temple Jones

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact libkbhelp@lists.osu.edu.

ISSN: 2159-8371 (Online); 1041-5718 (Print)