By co-writing plays with a collaborator who has Turner syndrome, Jones is redefining what her research looks like — and who it serves.
AJ Jones wanted her research to go further. A medical anthropologist and assistant professor of anthropology, she had spent years studying Turner syndrome, a genetic condition in which a female is missing all or part of one X chromosome. Jones, introduced to the syndrome through her research in reproduction and gender identity, found that traditional research methods like observation and interviews did not engage her participants as deeply as she’d hoped.
Turner syndrome is often linked to short stature, infertility, and a range of physical and social challenges. Jones interviewed 30 women, along with their families and caregivers, about these realities, but ultimately felt she wasn’t truly capturing their experiences.
That’s when she turned to theater, her undergraduate minor and a longtime hobby. She produced two plays, “Someone to Talk To” and “Hope Deferred,” with Joy, a writer and collaborator who has Turner syndrome. Their work also led to a paper in Visual Anthropology Review.
“I thought theater might be a helpful way to work through confusing questions around gender, sex, and disability identity,” Jones said. “Unlike some of the articles we write, performance can be more accessible.”
She and Joy wrote the plays over Zoom and shared Google Docs. Joy, who had already written nonfiction and a novel, focused on the dialogue. Jones helped shape the scenes and added stage directions.
“... It seems like we are all asking the question, ‘Am I normal? Is my daughter normal?’... The real question is, ‘Is anyone normal?’”
—excerpt from ‘Someone to Talk To’
What drew Jones to performance wasn’t just her own background; it was the medium itself. “Many people with Turner syndrome experience social anxiety and non-verbal learning disabilities that affect executive function and social awareness,” Jones said. “The therapeutic nature of theater aligns closely with those aspects of the condition.” She also sees public performance as a powerful way to foster community, something that can be difficult to find among the relatively small population of people with Turner syndrome.
More than that, it offered a way to build community, something that’s often missing for people with rare conditions. When they staged a reading of "Someone to Talk To" at a national Turner syndrome conference, the response was so strong they added a second showing. Now, they’re working to bring "Hope Deferred" to the stage.
For Jones, the plays are part of a bigger effort to rethink what anthropology can be — and who it’s for. “So much of our research is behind paywalls or written in ways that aren’t accessible,” she said. “We’re trying to change that. We want to collaborate, not just observe.”
To push that mission further, Jones launched the WashU Experiential Ethnography Studio, with support from her department and the university’s Center for the Humanities. The studio brings together students and faculty who want to use creative tools such as film, performance, or visual art to tell stories that matter, authentically and in collaboration with the people living them.
“I hope this work helps us find new ways to connect across differences,” Jones said. “That’s what anthropology needs now, more openness and more imagination.”
Header image credit: Cottonbro Studio/Pexels
