Consent as a relational engagement with children with intellectual disabilities—ethical conundrums and possibilities

Abstract

This paper aims to foreground the persistent ethical conundrums within the process of engaging children labeled with intellectual disabilities in the research process. I consider what happens when researchers are embedded within and committed to sustaining relationships with disabled children? I explore the possibilities of the enactment of consent as an ongoing negotiation between researcher and research participants. I contend that resisting and transforming unbalanced relations of power within research take seriously the importance of remaining mired in the ethical conundrums of the constant negotiation of research relationships that include making space for participant refusals throughout the research process.

Keywords:

• Consent
• participant refusals
• children with disabilities
• ethical research relationships

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 While person-first language is the widely accepted and taken for granted practice within education, throughout this paper, identity-first language (Liebowitz, 2015) will be used. Identity-first language is offered as an invitation to provoke a consideration of how disability is integral rather than separate from our humanities.

2 During the time of my doctoral studies, I was also a practicing elementary school teacher. I completed my doctoral studies on a part-time basis. As a result, I did not receive any funding, grants, bursaries or scholarships in support of my doctoral research (see Karmiris, 2019).

3 In addition to receiving ethics approval from the REB in the University of Toronto, I also received ethics approval from the REB in the Toronto District School Board as my research occurred during the school day on school property (see Karmiris, 2019).

4 My period of contact with participants for the purposes of my formal research inquiry occurred for 15 weeks (September–December, 2017) for a period of 20–30 min per class visit of descriptive field notes and audio recording. However, I volunteered in both of my classroom research sites for the entire afternoon I visited. I also continued to volunteer on a weekly basis in both classrooms for the remainder of the school year after my formal research inquiry was complete (see Karmiris, 2019).

Additional information

Notes on contributors

Maria Karmiris

Maria Karmiris currently teaches as a sessional lecturer in the Master of Teaching Program at OISE/UT. She also teaches as an elementary school teacher for the Toronto District School Board.