Rupturing Role-Play: Ethnographic Theater and Disability

From the Series: Disability as Rupture

Close-up photograph of a piece of knitting. The photograph focuses on unraveling red loops of yarn poking out of black fabric. Different patterns of red, green, and black knitting appear in the foreground and background of the photograph.
Detail from an untitled ethnographic knitting project, 2021. Image and knitting by Rebecca-Eli Long.

Nicole: Okay. I’m going to get into character...

I’ve asked Nicole to take on the role of Barb, a fellow member of the virtual rehearsal group I’ve organized for an ethnographic project on Turner Syndrome (TS). Barb, in her neighboring Zoom screen, is preparing to play her own mother. With my casting complete, the scene now rests in the improvisatory potential of Nicole and Barb. I’m in a position familiar to the ethnographer: I’m not sure what will happen next.

A few weeks later, Barb is a doctor. She shares information with Karen, convincing in the role of an expectant mother:

Barb: I have some news for you: your baby does have Turner Syndrome.
Karen: What’s, what’s that?
Barb: It’s where instead of having two X chromosomes, there’s only one X chromosome or maybe a partial X chromosome.

Like the imagined fetus, Barb, Karen, Nicole, and the three others who have joined me in this pursuit all have TS. Barb-as-doctor goes on to share with pregnant-Karen that the condition results in short stature and infertility, and is associated with heart problems, early vision and hearing loss, and nonverbal learning disability (NVLD). During nearly five months of exploratory rehearsals, our intimate group has been employing theatrical approaches to explore experiences of TS. I’ve spent weeks preparing scenes for my interlocutors to improvise and still find myself unprepared when called on to participate in exercises, like pitching an accessible use for a randomly selected object:

Barb: Alright. And how about you, AJ?
AJ: Okay, wait. I need to pick something without thinking too much.

Improvisation, I’m reminded in these moments, can leave us feeling foundationless. It may therefore seem an unlikely foundation for our interactions with the world. But it is essential: improvisation not only enables individuals to perform against ideological scripts but is fundamentally a relational process through which we excavate cultural histories and imagine collective futures (Hallam and Ingold 2007). In our ethnographic research and writing, the necessity of embracing improvisation is twofold: we must improvise alongside our interlocutors as they make sense of their lives, and in turn our plans and understandings inevitably shift. And for pursuits with inherently improvisatory approaches like ethnographic theater, the possibilities of improvisation only multiply.

Across our theatrical explorations, my interlocutors improvise beyond the confines of the scenes and exercises I create for them. They infuse the entire space—whether physical or virtual—with improvisatory energy, crafting new scripts for comfort and accessibility. In recognition of the social and spatial impacts of NVLD, my interlocutors make clear their preference for and strengths in verbal communication. Even in exercises that call for movement and abstraction, they create verbal and literal translations, challenging the supposed rules of theater, and therefore whom it is for. Take Nicole, whom I tasked with personifying her period:

Nicole:, hello there. I am your period, and I will be visiting you every month. Um...

With some trepidation, Nicole completes the exercise. Then, with renewed confidence, she begins the riveting tale of her first period:

Nicole: Okay, and then, the real story...

Nicole ruptures my plans for this exercise and reveals the incomplete accessibility of my project: I’ve created a space for a certain body and mind, one for which abstraction is imagined as sufficient to capture the contours of embodied experience. I’ve approached improvisation as a tool to access lived experience when it is, in fact, the process through which these experiences emerge. Nicole improvises accessibility during the exercise, just as she and others in the group improvise in their lives. With nearly everyone under five feet tall, they share a knowing laugh about climbing shelves in the grocery store to reach the Diet Coke bottles up top.

Passing and masquerading are familiar performances for many disabled individuals (Siebers 2008). Although they can become routine, the various and sometimes unexpected places in which inaccessibility emerges calls for the flexibility of improvising within these roles. Whether in the context of everyday life or in an ethnographic theater exercise, disability and difference reveal that many cultural scripts and the improvisational processes that maintain them are ableist, dictating “normal” bodies and their interactions. As Nicole and Barb demonstrate during and immediately after their role play as Barb and her mother, improvisation enables experimenting with pasts, presents, and futures that may be more inclusive and accessible:

Barb: You don’t have to worry about trying to be anybody else or be liked by anybody else. You just be you and enjoy being you.
Nicole: Will you still be proud of me, Mom?
Barb: Of course. I’m always here for you Barbie. I love you.
Karen: I wish I got to meet your mom.
Barb: I wish my mom would’ve talked to me like that.

As Barb reimagines her relationship with her mother, Karen acknowledges the realities that undergird Barb’s improvisation, while Nicole helps create space to enact these possibilities. The trio demonstrate ritual vulnerability—a means of being open with others—that ethnography, theater, and disability advocacy share (Hartblay 2020b). Improvisation is central to this process, as it is in practices of care (Kleinman 2015). However, this improvisational quality stretches beyond medical and therapeutic contexts, rife with ableist assumptions about “sick” disabled bodies. Instead, improvisation and the care it fosters hold potential for a disability anthropology that moves beyond medicalized models toward a robust integration of disability theories and methodologies (Hartblay 2020a).

Improvisation is everywhere, and it is inevitable. It shapes our social lives and structures the messiness of care. It ruptures our assumptions about bodies and provides tools to help build a more accessible anthropology in a more accessible world. Planning to improvise may seem paradoxical, especially when it exists in the minutia of all ethnographic projects as we adjust our approaches in real-time response to our interlocutors. But when we explicitly make space for improvisation in our work, including embracing the assumptions it uncovers, we critically engage with it as a social force that can reveal, unravel, and rebuild.

Nicole: ...and scene.


Hallam, Elizabeth, and Tim Ingold. 2007. Creativity and Cultural Improvisation. Oxford: Berg Publishers.

Hartblay, Cassandra. 2020a. “Disability Expertise: Claiming Disability Anthropology.” Current Anthropology 61, no. 21: S26-36.

Hartblay, Cassandra. 2020b. I Was Never Alone or Oporniki: An Ethnographic Play on Disability in Russia. Toronto: University of Toronto Press.

Kleinman, Arthur. 2015. “Care: In Search of a Health Agenda.The Lancet 386: 240–1.

Siebers, Tobin. 2008. Disability Theory. Ann Arbor: University of Michigan Press.