A partnership between the School of Performing Arts, the School of Communication Sciences and Disorders, and the Department of Psychology at UCF is helping improve the lives of people living with aphasia.
Aphasia is a condition that stems from a brain injury, most commonly the result of an accident or stroke. People with aphasia may struggle with oral and written language, such as finding the words to express themselves. While all people forget the word they are trying to think of occasionally, this may be a daily struggle for people with aphasia.
The National Aphasia Association (NAA) estimates there are 2 million. Only 15% of the population know about the condition, according to a 2020 poll the NAA conducted. To the untrained eye, the symptoms are often mistaken for intoxication or an intellectual disability. Aphasia is neither.
Seva Reilly, a student earning her bachelor’s in communications sciences and disorders, took a theater class in 2020 and quickly realized the potential the performing arts could have on some of the families she works with at UCF’s Aphasia House. The house is a clinic staffed by UCF communication sciences and disorders faculty. Graduate students work as student clinicians and undergraduates may volunteer to work with community clients. Reilly is the president of the Adaptive Community, also known as UCF Aphasia Family. This is a free community group for individuals and their families living with aphasia.
“I took Professor (Sybil) St. Claire’s Theatre for Social Change honors course in 2020, where she introduced us to the Playback Theatre,” Reilly says. “I loved how Playback shared and honored the stories of the audience, and I invited them to perform for Aphasia Family. The collaboration has only grown since then, and I was thrilled to be part of (the production) Advocating for Aphasia and its mission to increase awareness of aphasia among first responders.”
St. Claire, a lecturer at UCF since 2002, was eager to collaborate. She introduced Playback UCF to the campus community and has worked with the group for years as the faculty mentor. The troupe performs improvisational theatre where actors listen to stories from the audience and play them back using theatre, music, and metaphor. Her class focuses on how the performing arts can be used to support positive social change.
“People underestimate the power of art to impact lives,” St. Claire says. “There is often a sense of isolation and loneliness with aphasia, and it was only exacerbated by the pandemic. Playback UCF empowered participants to share their stories and build community. That’s the power of art. It can bring people together and heal in a broad sense of the word.”
The troupe performs on campus and throughout the community during the school year. Throughout the pandemic they also found ways to perform remotely.
As St. Claire and Reilly began chatting, they added Sage Tokach, graduate student in the theatre for young audiences program and artistic director of Playback UCF, to the team. Soon they had a project they named Advocating for Aphasia: Using the Performing Arts to Raise a Conscious Community, which was funded by a Pabst-Steinmetz Arts and Wellness Innovation grant. The goal was to empower those with aphasia to self-advocate and to educate first responders about the condition.
That project culminated in a celebration called Aphasia Family Field Day held this past April at Lake Claire on UCF’s main campus. The day brought together UCF student volunteers, UCF faculty, stroke survivors and their caregivers, the UCF Police Department, and Playback UCF.
A key goal of the project was to create an educational video designed to increase awareness among first responders. The team, which also involved graduate students, including film major Sherry Dadgar and performance major Sterling Street, worked together to create an educational video to be shared with first responders and organizations devoted to advocating for aphasia. The video was completed in May and is actively being shared as part of Aphasia Awareness Month, which concludes on June 30.
Sharon Pierson, an Orlando resident who participated in the project, said she was happy to be part of it.
“It means that I can share my personal experiences and how Aphasia has impacted my life,” Pierson says. “Also, to let others know that Aphasia is not the end of the world. It does not mean we are not smart people. In fact, we are very smart. It’s just unfortunate that we can’t get our words out the way we want them to come out.”
St. Claire also is preparing journal articles with the faculty team from the School of Communication Sciences and Disorders (Amy Engelhoven and Lauren Bislick) and the Department of Psychology (Megan Sherrod) about the project and what was learned.
“Collaborations like these, are powerful,” St. Claire says. “I’m proud we could come together to showcase how art can make a difference.”
As for Playback UCF, they are taking a break this summer, but plan to continue to perform in the community, on campus and with UCF’s Aphasia House again.