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.

From Boal’s (1993) emancipatory Theatre of the Oppressed to more recent post-structural work, participatory theater approaches attend to recognizing and deconstructing social issues (Delgado & Humm-Delgado, 2017; Massa et al., 2020). Yet much of this work, while intersectional, reinforces an ableist fissure where participation and potential contributions of disability communities, especially those labeled with intellectual and developmental disabilities (IDD), who refer to themselves as self-advocates (SAs), are not fully integrated into Research-based Theater (RbT) processes. Romance, Relationships, and Rights (RRR), a collaboration between the University of British Columbia’s Canadian Institute for Inclusion and Citizenship (CIIC), the Community Living Society (CLS), and the City of New Westminster, sought to de-center ableist assumptions about disability and sexuality through RbT.

This article is a story of learning from ethical challenges within an RbT project. Issues related to consent and accessibility caused us to rethink our envisioned approach. We encountered ethical questions and barriers early in the study which required us to advocate for research participants with IDD to be recognized as capable of consent and sexual agency. But it was ethical dilemmas that arose as we moved into the knowledge-mobilization-through-theater phase of the work where we were confronted by our own biases/assumptions and how these were limiting SAs’ contributions. The more we engaged in devised theater processes, the more we recognized that centrally positioning SAs within the research required an interrogation of power aligned with critical disability studies (CDS) and disability justice. Through sometimes clumsy reflexivity, ethical challenges served as generative openings to examine unrealized privilege, underlying assumptions, and unequal power dynamics in the RbT process. In this article, we first interrogate enduring ableist structures within research and theater processes through our theoretical underpinning in CDS and critical theory traditions. Then, we unpack what we have learned from and through ethical questions and dilemmas encountered within our research-based disability theater project.

Theoretical Context: Critical Disability Studies and Disability Justice

Our work is centrally informed by CDS. Such a stance questions and problematizes normative assumptions and privileged discourses, particularly medical practices/discourses, that produce disability as a pathological condition residing within individuals’ bodies and minds (Goodley, 2017; Linton, 2006; Schnellert et al., 2019). In fact, CDS rejects individual and deficit-based understandings of disability, and rather affirms disability as a social/political category that serves and functions as a basis for political activism (Linton, 2006, p. 163). In this way, CDS centers the experiences and perspectives of people with disabilities, “maintaining that disability is a political and cultural identity, not simply a medical condition” (Dolmage, 2017, p. 10). Constituted as such, disability is understood as a positive, shared identity that is a valued part of human diversity. Instead of focusing on bodily or cognitive impairments, CDS shifts the gaze and scrutinizes “the social norms that define particular attributes as impairments, as well as the social conditions that concentrate stigmatized attributes in particular populations” (Minich, 2016, para. 6). CDS aims to expose and interrogate “the ways in which disability has been ‘imbued with meaning(s)’ and [re-assign] meanings that are ‘consistent with a sociopolitical analysis’” (Linton, 1998, p. 10) (as cited in Schnellert et al., 2019, para. 9) and social action.

Increasingly, disabled scholars and activists are calling for critical disability scholars to reflexively interrogate their work and consider how disability scholarship aligns with disability justice (Mingus, 2011; Minich, 2016). A move toward disability justice forces an examination of how our work forges connections and community that moves beyond an equality-based model and human rights approach, to one that “embraces difference, confronts privilege and challenges what is considered ‘normal’ on every front” (Mingus, 2011, para. 5). Disability justice embraces an intersectional approach understanding that disabled people are “people of color; women, genderqueer, transgender; poor and working class; youth; immigrants; lesbian, gay, bisexual and queer; and more” (Mingus, 2011, para. 11). In this way, “[d]isability justice activists are engaged in building an understanding of disability that is more complex, whole and interconnected than what we have previously found” (Mingus, 2011, para. 11) and disability justice is “working towards collective justice and liberation, towards transforming society as a whole” (Mingus, 2013, para. 2). Thus, as Erevelles (2014) urges, “. . . the time has come for disability studies scholarship to locate itself uneasily and yet hopefully at the apprehensive boundaries between academia and activism” (para. 25). Informed by critical disability scholarship and a commitment to disability justice, with Minich (2016) we ask, “How might we foment ethical relationships between disability scholarship, disability activism, and communities of disabled people? In other words, what do we want our work to do” (para. 4)? RbT is uniquely positioned to examine the effects of ableism and disrupt the binaries of ability/disability, as well as amateur/artist, and academic rigor/aesthetic value. In particular, “research-based theatre can provide opportunities for a critical perspective through which to view research as well as opening for cathartic responses for audience members” (Belliveau & Lea, 2011, p. 334) that engages co-creators, performers, and audiences into a dialogic relationship to investigate research in action together and construct meaning that is rich, ambiguous, and alive. By working through emergent ethical issues in our project, our research iteratively moved to more fully embrace a CDS and disability justice approach that centered SAs as co-inquirers and produced a “transformative accountable praxis” (Erevelles, 2014, para. 26) in our RbT process.

Literature Review

RbT falls under a large umbrella that marries qualitative inquiry and the performing arts as a form of scientific inquiry and dissemination. Whether the work uses verbatim dialogue from participants or allows more creative freedom in crystallizing the research findings into themes that inform the theatrical performance, RbT embodies an iterative process of meaning-making and knowledge sharing the can “expand understandings, engage audiences, and provoke new learning experiences” (Beck et al., 2011, p. 698). Also known as ethnodrama, enthnotheatre, theatrical research-based performance, or seventy-eight other alternative terms (Saldaña, 2011, pp. 13–14), RbT extends beyond traditional research findings and academic articles and instead engages audiences, academic or otherwise, in understanding research through an embodied and accessible experience (Belliveau & Lea, 2011). Indeed, “[t]he translation of qualitative research into dramatic form fosters the emotional engagement of audiences through the audience’s awareness that the staged re-presentations they are witnessing are based on actual events” (Kontos & Naglie, 2007, pp. 807–808) and in our work, devised and performed by SAs themselves. Furthermore, the use of dramatic production is an effective method of education, making research

more vital, tangible, and relevant. Not only does research-based theatre hold both academic credibility and validity, but it also has a uniquely compelling emotional quality that engages audiences on both affective and cognitive levels, a process that is central to the success of educational interventions. (Colantonio et al., 2008, p. 181)

This emotional quality may be responsible for increased knowledge retention, raised awareness, and “unsettl[ing] stereotypes” (Leavy, 2018, p. 10).

Within this broad scope of practice, the RbT spectrum proposed by Beck et al. (2011) aims to locate individual research projects and place them in conversation with each other. The RbT spectrum depicts a research continuum between systematic and informal and a performance continuum from a closed/conference performance to an aesthetic performance (p. 694). Within this spectrum, our project could have initially be best located as “systematic research” (p. 694). However, it evolved to become “stakeholder/aesthetic performance based on more informal, first-hand research” (p. 694). While the initial intention of the RbT form was to foster SAs ownership over the work, we only recognized our need to deconstruct our allyship as researchers and theater practitioners once we embarked on the devising process. The evolution of our RbT form held space for SA actors to become co-creators in the development of RRR, as described in our discussion. What sets our work apart from previous RbT projects is the intersection between RbT and disability theater.

Despite and perhaps in response to disability inequity in Canadian society, Canada has a rich history of disability theater (Decottignies, 2016). This history is connected to disabled feminist artists leading the movement to create more equitable, diverse, and innovative theatrical work that is rooted in political commentary. Moreover, disability theater is

intrinsically political, but also aesthetically challenging. Aesthetics is founded upon the assumption that we all experience the world through the senses—and the body acts as conceptual glue here—in broadly the same way. [However] Disability aesthetics . . . changes the role of art and the artist. (Conroy, 2009, p. 11)

We posit that in a similar way to which disability aesthetics changes art, disability theater challenges and can expand theater and research processes. Disability theater requires us to change as artists and researchers who are engaged in ethical theater-making and knowledge-sharing processes. An RbT project that engages with disability aesthetics “interrogates society’s—and theater’s—overwhelming preference for whole, independently functioning, rational-minded persons. . .[that] challenge both the form theatre takes and the normative concepts that underpin its enduring structures” (Hargrave, 2015, pp. 9–10). Furthermore, RbT and disability theatre can reveal the rigid and normative concepts underpinning academia wherein “resorting to academic prose would have muted the physical, emotional, and sensory dimensions of communication so aptly depicted in the [theatre] production” (Kontos & Naglie, 2007, p. 807).

In a final layer, exploring sexuality through RbT and disability theater offers a nuanced perspective on normative conceptions in Canadian society that deny the sexual agency and expression of individuals with IDD (Bernert & Ogletree, 2013; Gill, 2015; McClelland et al., 2012). As Lipkin and Haddad (2018) argue, “It is interesting and troubling that sexuality is often erased when disability is in the room” (p. 232). The erasure of sexual identity for individuals with IDD is far too common (Gill, 2015). Contending with the complex intersections of RbT, disability, and sexuality led to a number of “ethically important moments” (Guillemin & Gillam, 2004, p. 262) in both the research and theater process—as inseparable as they are from each other—to reveal tensions of power, representation, and whose voices are valued. Furthermore, the underpinnings of CDS and disability justice connect to RbT and disability theater through commitments to “transformative accountable praxis” (Erevelles, 2014, para. 26). Thus, in this article, we explain how normative and/or institutional conceptions of ethics and consent, and research and theater, were disrupted to recognize the contributions of disabled persons and communities (i.e., praxis).

Inquiry Method

We received a 3-year grant from the Vancouver Foundation to engage in a participatory action research (Kemmis et al., 2014) project with three phases. Phase 1 encompassed a qualitative study interviewing SAs and sexual health educators about sexual health and focused on developing cross-organization collaborations with CLS, CIIC, and the City of New Westminster and its Theater. Phase 2 involved planning a theater production. A steering committee with representatives from all of the partner organizations was established and met to plan for SA, undergraduate and graduate theater student, and theater artist recruitment, and negotiate logistics. The steering committee considered support needed for SAs during theater development, rehearsals, and production.

To begin Phase 3, theater facilitators (including Schnellert) offered drop-in workshops introducing devised theater techniques to SA non-actors. The workshops occurred from September to November and featured theater activities regarding communication and consent. In December, participants had 1 month to decide and consent to participate as co-creators in an RbT production about SA sexual health. From January to March, a production team of theater artists (TAs) joined the project to assist with mounting scenes created by the SAs for a traditional theater setting. TAs were introduced to the devised theater process, and yet had to design a traditional, technical production that had to be ready for predetermined performance dates as part of the Theater’s annual public program. Once the Company was formed, the devising process occurred over 3 months where three scenes were created based on the desires and vision of the SA co-creators. RRR comprised scenes with video interludes from Real Talk, a collection of interviews with individuals with IDD about their sexuality. Below we include plain language descriptions as found in the playbill:

• Part 1. Starting the conversation. Video where people talk about what it was like to meet people online.

• Part 2. Navigating relationships online. Scenes about dating online.

• Part 3. Expressing what we want. Video where people talk about how they decide if they feel safe to be alone with someone.

• Part 4. Making relationships work. Scenes about different stages of relationships.

• Part 5. Claiming my rights. Video where James talks about the support he gets around his sex life.

• Part 6. Realizing romance. How two people received the support they needed to be together.

• Question and Answer Session.

Method

From the beginning, we framed this study as critical participatory action research (CPAR) (Kemmis et al., 2014) as proposed to the Vancouver Foundation, our funding body, and approved by our university Institutional Ethics Board (IEB). Yet retrospectively, we see Phase 1 as traditional qualitative research (Hole et al., in press). Phase 2 demonstrates CPAR where SA co-creators’ shared ownership for the development of the content of the production drawing from their lived experience, identifying the messages, and perspectives they wanted their peers, families, caregivers, and society to receive and shaping the form of the theater production. In Phase 3, we conducted focus groups to understand SA, TA, and steering committee member experiences of the RbT process (see Schnellert et al., 2021). In this article, we offer reflections on the ethical tensions encountered throughout our RbT process. Participant quotes are used to support the interpretive validity of these reflections using abbreviations based on their roles in the project: self-advocate co-creators (SA), theater artists (TA), inclusion facilitators (IF), and steering committee (SC). Our offerings reflect how we encountered issues regarding consent, and how the collective creation process revealed multiple points of ethical tension, requiring us to become bricoleurs (see Denzin & Lincoln, 2005; Kincheloe, 2003) drawing from disability theater, devised theater, and RbT. In particular, we take up the notion of voice and the practice of creating RbT ethically that centers SAs’ perspectives and contributions. While we have separated our offerings into two themes, they are not distinctive but rather interlocking and informing each other to deepen understanding of each.

Offerings

Assumptions and Processes Regarding Consent in Research and Devised Theater With Self-Advocates

In the process of obtaining IEB approval, ableist assumptions about the capacity of participants with IDD to consent on their own behalf surfaced. The issue of consent also became a key focus within the theater development process as related to practices of consent and professional touch, particularly in creating a performance about sexuality. As noted earlier, while constituting different notions of consent, we argue that the institutional assumptions about SA capacity to consent is echoed in the ableist notions regarding the boundaries of SA’s consent in sexual activity—the purpose of this RbT project.

Beginning with the IEB requirements through the University of British Columbia, definitions around the capacity to consent were in conflict with our CDS positioning and within RbT and disability/devised theater. While issues of consent emerged early in Phase 1 of the project, our response to the IEB set the stage to mitigate ongoing gatekeeping based on epistemic privilege based on deficit/medical models of disability. These early learnings sensitized us to ongoing ethical issues surrounding consent.

Upon submitting our ethics application for review, concerns were raised by the first and second reviewers around SAs’ capacity to consent. This assumptive ableist stance, with inherent bias around the individuals’ with IDD ability to consent, became an opportunity to educate and raise institutional reviewers’ awareness and understanding about the rights of individuals with IDD to participate in research and be self-determined. In response, we proposed an argument in line with international and national disability and IDD positions on ability to consent.

With respect to ability to provide consent, we agree that “adult persons with intellectual disability should be assumed capable of providing informed consent, unless it has been established otherwise; for example, by formal assessment and/or legal determination” (Dalton & McVilly, 2004, p. 62). This position is in line with Article 12 of the UN Convention of the Rights of Persons with Disabilities (2006), the R. v. D.A.I. judgment of the Supreme Court of Canada, and the International Association for the Scientific Study of Intellectual Disability’s position on informed consent and legal capacity (Dalton & McVilly, 2004).

While this reliance on international and national statements and legal arguments about SAs’ ability to and rights to consent persuaded the IEB, we came to understand that taking up such a stance was problematic in Phase 2 and the beginning of the RbT process. Retroactively, we realize that in Phase 1, we were re-creating the power inequities within the institutional ethics approval process by positioning SAs as “research participants” that denied their roles as co-creators. We strove to address these power inequities in Phase 2 by engaging SAs as artists and researchers whose lived experiences and collective creation modalities led the RbT process, discussed further below. The initial barrier of IEB reflected the ableist assumption that individuals with IDD are not capable to participate in research, much less be co-researchers, and impacted our RbT approach by highlighting our own biases as neurotypical researchers. This project surfaces a need to disrupt notions of who creates knowledge and who conducts research and how, to directly challenge ableist institutional practices that further marginalize individuals with IDD. Indeed, framing individuals with IDD as lacking capacity to give consent disables them.

Consent was also negotiated in terms of professional touch and having repeated discussions about what consent looks and feels like in a sexual encounter. According to Track et al. (2017), “Consent is when a person communicates clearly they agree to take part in a sexual activity. The law says you must get consent if you want to do anything sexual with another person” (p. 2). Our early work as a theater company focused on consent as SA co-creators had different understandings and comfort levels with personal contact. Some members had a life practice of hugging all those in their circles, others desired and sought physical touch but had trouble understanding others’ boundaries, and still others needed clarity on the lines between consensual touch within devising activities and actual courtship. Important to note is that each SA had different levels of comfort with touch, ways of communicating consent, and life experience. Setting boundaries about consensual practice in scene creation, such as how close to stand to each other, what kind of touch was needed to convey the story, and clear delineations between what was happening in our characters’ lives and our personal lives, became a routine in each rehearsal. The boundary setting process was necessary due to the topic of the project, the needs of SAs, and our commitment to an ethical RbT process that honored co-creators’ contributions as both researchers and actors. In one focus group discussion, an IF reflected, “Yes, there’s the handshake-high-five-hug piece which is great, talking about yes and no. That stuff is great . . . this is a job, and when we’re at work, these are the boundaries.” Establishing boundaries and repeating what those boundaries were both on and off stage offered a dialogue that we hoped would translate into the personal lives of SAs. Negotiation and communication around consent is a skill that many individuals—regardless of ability—require practice with; engaging in theater-based consent practices offers this learning in a safe and supportive environment (Selman & Heather, 2015, p. 314).

Creating opportunities for SAs, their families, and caregivers to engage in sexual health education and discussions was an important outcome for this project. CLS approached Hole with this need and a desire to be proactive in supporting SAs in their rights to sexuality. There was uncertainty in how families and caregivers would respond to the topic of sexuality, but the benefits of discussing SAs’ rights to and barriers to relationships were deemed greater than the risks by the leadership of CLS and reinforced in the literature (e.g., Garbutt, 2009). This was particularly salient in negotiating consent considering that many individuals with IDD desire to develop as sexually expressive, fulfilled persons (Gill, 2015), yet they are often denied the sexual health education to support their sexual agency. RRR not only addressed these issues with audiences but required us to co-construct understandings and practices as a Company. Referring to the devising process and SAs work with each other and IFs, one SC member reflected,

[Consent] wouldn’t necessarily have arisen with other topics but it did arise out of this topic because it opens up people’s feelings about sexuality and their desires and you don’t necessarily know how that’s going to play out when they’re interacting with each other.

Moreover, RRR helped family members and caregivers recognize ableist assumptions and practices related to consent. For instance, one audience member who worked in a group home shared that they did not realize that they were making assumptions about the sexuality of a SA they worked with and that they needed to ask the individual what they wanted/needed (personal communication). Another shared,

we always looked at everything from a safety perspective, keeping people safe, but we forgot about the fact that there’s the right to some risk, that element of risk and you know that education piece. Again, it’s a topic that people don’t want to talk about so [RRR helped] people really think about their jobs differently (IF).

Success of these efforts was apparent when we traveled the show to the 2019 Inclusion BC conference in Victoria. As we ran through the scenes just prior to performing the production in a new venue, we discovered that the smaller stage limited mobility and, as several co-creators were in wheelchairs, new blocking was required. Suddenly, we were out of time with our final scene left to re-block. With only 10 minutes left before the doors opened, and a final scene where every co-creator engaged in touch, new scene partners were assigned. One TA noted, “Having to work out consent between each of the pairs because they had new scene partners [required SAs to quickly negotiate] ‘What are you comfortable with and what’s appropriate?’” This moment leveraged our previous explorations of consent and was integral to rapid sense-making between scene partners. Schnellert spoke directly to the SAs about why the change in scene partners was necessary and then IFs checked in with each pair to establish parameters regarding touch.

These instances of negotiating consent between SAs offer “‘ethically important moments’ in doing research—the difficult, often subtle, and usually unpredictable situations that arise in the practice of doing research” (Guillemin & Gillam, 2004, p. 262). From establishing the capacity to consent with the IEB to the exploration of consent within theater processes and the topic of sexual expression, the tensions that arose helped us to interrogate when and how SA agency is impacted by institutional and artistic assumptions and practices.

Tensions Around Aesthetics, Representation, and Voice

Arguably, balancing aesthetics, disability representation, and co-creators’ voices is a constant struggle in any RbT project and was even more so in addressing SAs’ sexual rights. Our devised theater approach meant that we were negotiating our roles as researchers, theater facilitators, co-creators, stage managers, inclusion facilitators, and theater designers during the development phases of the project. This was reflected in the evolving roles of SAs from participants in research knowledge mobilization to co-creators through devised theater processes, as noted in our first theme in the transition from Phase 1 to Phase 2.

We had to shift our overall RbT approach from knowledge mobilization of findings from qualitative interviews with SAs to the co-creation of messages through iterative cycles of devising informed by topics and issues generated by the SAs. Our process evolved along the spectrum of RbT proposed by Beck et al. (2011) from “systematic research” to “stakeholder/aesthetic performance based on more informal, first-hand research” (p. 694). Therefore, we could not ethically share back SAs’ quotes from the qualitative interviews since there was overlap between interview participants and SAs who became co-creators. In hindsight, while both lead researchers had experience in disability theater, they had not fully unpacked their experiences with and conceptualizations of what was being created in this RbT project. Hole, who was approached by CLS, wrote the proposal, and led Phase 1, had previous success with RbT as systematic research knowledge mobilization, while Schnellert, who was consulted on the proposal and led Phase 2, had extensive experience in devised theater. As we planned Phase 2 with the steering committee, which had membership from all organizations, a theater professional, a SA, and researchers, it appeared that tensions between these two approaches had been resolved. However, we can see echoes of miscommunication throughout Phases 2 and 3. Our intention was to center SAs’ voices through Phase 1 qualitative interviews but SAs were not part of the decision-making in how that data were going to be used within the RbT process. As some of the actors were participants in the qualitative interviews, sharing the data created an ethical dilemma putting some SA actors in a precarious position. Thus, the interviews were put aside and we moved to cycles of co-creation with all SAs identifying tensions, issues, and messages they wanted to communicate regarding romance, relationships, and their related rights.

This change in form aligns well with inclusive theater and research practice. However, while the emergent processes of devised theater offered the SAs increased agency, this became a point of tension between professional TAs, the research team, and theater students on the production team. The iterative approach caused confusion and frustration for TAs who were under time pressure to complete tasks before our first public performances. Despite reminders throughout Phase 2 that our RbT process was responsive to SAs’ ideas and needs, one TA reflected, “There were too many goddamned cooks in the kitchen in terms of creative decisions.” Belliveau and Lea (2011) depict this tension as “[a] balance [that] should be maintained between the ethical responsibilities of the researcher to his or her data and the artistic responsibilities of the playwright to the art form” (p. 334). In this work, the entire theater company was the playwright, and this shift in practice from professional theater creation with distinct roles and strict deadlines to an iterative RbT process revealed tensions in TAs’ expectations and roles. Indeed, to ensure the integrity of our practice, SAs’ voices needed to guide the process and inform the performance aesthetics—a point of tension amplified with the introduction of traditional TAs.

The TAs brought into the project had no experience working with SAs previously and most had minimal experience working in devised theater. In part, their participation was based on availability and eagerness to gain valuable theater experience as they were about to or had just finished their degrees. Therefore, most TAs were trained in traditional theater aesthetics and struggled with the evolving nature of their responsibilities in ethically and artistically creating with SAs. As Hargrave (2015) indicates, “[D]isability is an aesthetic value in itself; one that, at the level of form as much as content, encourages insight into, and appreciation of, human variation” (p. 9), which requires adaptability. To illustrate the struggles with adaptability, one TA reflected on the process as being vastly different than a traditional theater production:

if the outcome that’s wanted is like a fully realized production, then it needs to be someone who has the previous experience of producing and being a production manager in like a theatre building and like okay, there’s a deadline like we have rehearsals and then sets start getting built . . . Versus devising or site-specific, or social theatre or da-da-da-da-da, you know?

The “da-da-da-da-da” is precisely the ambiguous and iterative nature of devising that unwittingly reveals a well-documented tension in applied theater literature between process and product (Prendergast, 2017; Snyder-Young, 2013). The disconnect in theater practice brought about repeated aesthetic and representational tensions where the desire to create a “fully realized production” clashed with centering SAs’ voices, the values of disability theater, and our emerging RbT form of “stakeholder/aesthetic performance” (Beck et al., 2011, p. 694). Another TA articulated, “We’re working at two different levels essentially.” These two levels struggled to define and explain themselves to each other and underpins White and Belliveau’s (2010) distinction that “unlike a nonacademic playwright, an academic researcher has more binding ethical obligations to protect and fairly represent participants” (as cited in Beck et al., 2011, p. 688). This reflects the complex nature of RbT itself where the balance between research and theater is constantly re-negotiated and is even more crucial while working within a CDS paradigm. While seemingly small, it is the difference between creating work that “give[s] a voice” (Garbutt, 2009, p. 19) to SAs as opposed to holding space in which SAs’ voices can be heard. Indeed, the final ethical consideration was voice where tensions of aesthetics and representation emerged as rooted in power and whose voices were empowered through our RbT process.

The reflexivity embedded in ethical devising demanded attention to when needs were not being met and offered a space for co-creators to feel ownership over the theater-making and research process. In post-production focus groups (Phase 3) with SAs, being heard and understood by audience members, support workers, and family members arose as feelings of power and recognition of their messages. The self-identified feelings of strength and power are highlighted in the following reflections from two SAs: “Being able to express myself in a way that makes sense to everyone else, was a cool thing I learned,” and “I have never been on a microphone on a stage before, it made me feel good and strong.” In addition, the experience of being on stage and sharing one’s own words became a moment of celebration and affirmation for SAs: “I wrote my own lines! I was a writer and an actor,” and “Everyone clapped for me when I said ‘Damn HandyDART!’ I was finally in the spotlight. I could finally be me. It was, aaaa. I felt creative. I wrote my own lines.” These comments illustrate the importance and contributions of inclusive design. The significant tensions that the production team experienced were generative in that aspects of lighting, sound, and set design shed light on the people and voices that are too often overshadowed. As one SA reflected,

The lights were helpful, they shined on the stage and I was in the lights. It helped me know what to do on the stage. I had never been on stage before in my life; it makes me feel good and I want to keep doing it.

In some instances, SAs identified concerns about technical aspects of the production that needed to be incorporated. For the actors in Scene 1, SAs, IFs, and TAs were able to discuss and generate solutions quickly and easily. In Scene 2, the “voices” of some actors with diverse communication methods were not fully understood or translated even up to technical rehearsal. Solutions had to be generated—projections, physical prompting of lines, lighting, entrances/exits—with little time to spare. This created high stress for TAs and IFs who each had different priorities based on their roles: TAs were focused on technical aspects of the production whereas IFs were navigating the intricacies of support when creating theater with SAs. The tensions identified and navigated in this project reveal the complexities of a commitment to disability justice and highlight the contributions of disability and devised theater to forms of RbT.

There was learning for all collaborators. One of the TAs remarked that witnessing the devising workshops

changed my perspective on the project and just to know why are we doing this, usually when we do theatre it’s just like “Here’s the script and this is the show. This is what I want you to do.” And this was very different for me and I appreciate being there, like I really enjoyed it. I’ve done devised theatre before, [but] I haven’t worked with self-advocates before, and I think once I met the actors it just changed something.

This marked change highlights our theoretical underpinnings as practitioner-researchers who recognize “the importance of doing in developing knowledge—the stance that there are certain things which can only be known through their enactment” (Ladkin, 2005, p. 112). Furthermore, creating theater with SAs revealed previously unexamined ableist theater practices. Several TAs reflected on adapting their understanding of staging, lighting, and sound through their experience of working “with this incredibly diverse and beautiful group of people that you don’t work often with in theatre, but you really should.” Much of the literature related to disability theater focuses on communicating social messages and creating disability aesthetics that disrupt and defy normative assumptions through and within theatre. This RbT project additionally illustrates the potential of negotiating and embracing the complexities of aesthetics, representation, and voice.

Synthesis

Engagement in this project provided us with ongoing opportunities for reflection as we wrestled with multiple and overlapping ethical tensions. The iterative nature of both devised and disability theater can inform RbT in important ways that disrupt ableist practices in research and theater, centering the importance of disability justice. This is crucial to the community living sector committed to promoting the inclusion of individuals living with the label of IDD. Individuals with 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. The intent of the project was to disseminate knowledge gained from qualitative interviews with SAs through an original production, Romance, Relationships, and Rights. While the goal was to address misconceptions of individuals with IDD and sexuality, attending to “everyday ethics” became a central focus as we moved from Phase 1 to developing and engaging with a company of SA co-creators. Through considering questions of consent, aesthetics, representation, and voice, the development of the project identified and countered ableist practices to realize more equitable opportunities. As the voices and perspectives of the company of co-creators grew stronger, their ownership of the creative process increased. In tandem, the devised RbT became more grounded in disability justice.

This inquiry helped us to realize how RbT and disability theater can become “transformative accountable praxis” (Erevelles, 2014, para. 26) from a disability justice perspective. Throughout the project, ethical tensions percolated. In the process of obtaining IEB approval, ableist assumptions about “legal capacity,” the capacity of participants with IDD to consent on their own behalf, surfaced. If we only attend to RbT methods and our audiences, we risk insularity. RbT holds potential for theater and research to inform and enrich each other as well as center the voices of research collaborators, yet this project reveals issues related to equitable opportunity and participation for disability communities. Gatekeeping structures such as defining legal capacity to consent via ableist, medically based, deficit-oriented assumptions need to be challenged. These same assumptions underpin misinformed beliefs around SAs’ sexuality wherein our discussions and theater-based practice of consent—both sexually and as actors—became integral in working from a CDS lens.

Our analyses also illuminated an ethical tension regarding aesthetics. Competing values and practices between traditional theater production and devised, disability theater clashed. This became particularly manifest in the transition from devising scenes to technical and artistic production; disability theater requires ongoing iterative inclusion enactments whereas traditional theater values the implementation of artistic vision in production. Indeed, Mitchell et al. (2011) write that “the arts often express what can sometimes only be felt or glimpsed” (p. 388) and allow us to see each other as humans in all our messiness, complexities, and joys. As our Company of SAs and TAs worked together, we discovered how easy it is to smooth over and even miss the diversity of perspectives and voices within the disability community. Our embedded IFs worked iteratively between the SAs and TAs to advocate for interventions that would support and hold space for SAs’ voices with memory diversities, non-standard (e.g., non-verbal) communication, and nuanced intersectional messages that were discovered well into the final stages of production. It was through encountering and working through ethical issues, such as SA full participation throughout the creation process, that we centered SAs voices and messages and reconstituted technical aspects of the production for these to be heard.

What have we learned? What does this look like in action? This project suggests that RbT meets disability justice when SAs are part of every aspect of inquiry. This includes knowledge generation, knowledge translation, and artistic/aesthetic processes and decisions. We entered the project as researchers with backgrounds in CDS and devised theater. As we worked through ethical tensions, we developed new understandings both practically and theoretically that have helped us better articulate a commitment to disability justice (Mingus, 2011). Working from Schnellert’s background in devised RbT, we made assumptions about how easily all stakeholders would invest in the approach. While we negotiated the tensions between devised, disability, and traditional theater forms throughout, it was when the ethics of representation and voice had to be addressed that the development and production processes exposed the need to integrate disability justice. In our ongoing work, we now recursively re-center SAs as co-creators and co-researchers. As theater artists/designers join the project, we are explicit about our ethical commitment to disability justice and the centrality of navigating artistic support as part of their role.