Romance, Relationships, and Rights: Ethical Considerations and Dilemmas in a Research-Based Theater Project With Self-Advocate Co-Creators and Actors

Abstract

Individuals with intellectual and developmental disabilities (IDD) are often excluded from conversations about sexual health; when included, well-meaning researchers and support workers often speak for individuals instead of creating opportunities for their voices to be heard. To support the sexual agency of people with intellectual disabilities, who refer to themselves as self-advocates (SAs), we embarked on a Research-based Theater (RbT) project, Romance, Relationships, and Rights, with the goal to address misconceptions of individuals with IDD and sexuality. Throughout the project, ethical tensions percolated from ableist assumptions about “legal capacity,” consent both on and off stage, and conflicting perspectives on aesthetics. Throughout this article, we discuss these ethical dilemmas and offer recommendations for future work with SAs in co-creating RbT through the lens of disability justice and critical disability studies.

“You have the right to love and be loved”: participatory theatre for disability justice with self-advocates

“…In this paper, we focus on the experiences and insights of the SA co-creators, theatre artists, inclusion facilitators, and steering committee members and only include minimal audience perspectives. While the tensions of aesthetics are explored here, we more fully articulate the art form and its integrity in another publication, as well as highlight audience impact (Schnellert et al, in review).…”

“…Processes must be responsive to community needs and align with CDS values in constantly re-evaluating accessibility and equity at each step. We sought “to shift our focus from the central stories we constantly recycle and, instead, hold space for diverse stories, ways of being, and seeing the world” (Schnellert et al, in review). Therefore, our (emergent) theatre form approach in RRR incorporated practices from previous innovations and recognized the need for SAs to co-develop theatre interventions/research.…”

Disability Theatre as Critical Participatory Action Research: Lessons for Inclusive Research

“…Disability aesthetics change art disrupting normalized concepts of identity and non-disabled privilege and offer access for those with diverse modes of knowing, being, and doing (Decottignies 2016). In a similar way to which disability aesthetics changes art, disability theater challenges and can expand theatre and research processes (Schnellert et al 2022).…”

“…In 2017, we undertook a participatory theatre research project regarding the sexual agency of individuals with intellectual disabilities (Schnellert et al 2022(Schnellert et al , 2023. The development of the disability theatre project, "Romance, Relationships, and Rights (RRR)", was initiated when the executive director of a community living agency approached researchers at the University of British Columbia's Canadian Institute for Inclusion and Citizenship (CIIC) to learn about how their agency can better support self-advocates' sexual citizenship.…”

“…In this article, we offer our experience with disability and devised theatre as critical participatory action research (CPAR) to describe an example of enacting inclusive research where self-advocates, theatre artists, researchers, and a community living society collaborated to create a social justice disability theatre project titled, "We Deserve to Work!" Taking up a disability justice lens, we use the term self-advocates to refer to individuals with intellectual disabilities, "a term that positions individuals with [intellectual disabilities] as self-determining and acting with agency" (Schnellert et al 2022). The purpose of this reflexive narrative is to demonstrate how disability theatre CPAR can contribute to and advance inclusive research practice.…”