Spontaneous Mutation Podcast
Spontaneous Mutation Podcast
Podcast Description
The Spontaneous Mutation podcast aims to reclaim the narratives around facial difference. In science, a spontaneous mutation is a genetic change with no known cause. This was the explanation songwriter and host Halley Elwell was given by doctors when she was diagnosed with Neurofibromatosis at age 11. No one else in her family has the condition, which causes tumors to grow on nerves and has affected the appearance of her jaw, chin, and neck.
For this project, Elwell decided to use the term as an artistic lens. She knew what happened when a gene mutated and how it made her appearance change, but what happens when a spontaneous mutation occurs in art, conversation, or your life?
Over the course of 7 episodes, Elwell and 5 guests explore the complex and profound insights that come from exploring the lived experiences of disability and facial difference.
Podcast Insights
Content Themes
The podcast tackles themes of disability, societal perceptions of facial difference, and personal storytelling. Episode examples include discussions on civil inattention during the pandemic, the emotional impact of living with neurofibromatosis, and the transformative experiences of guests like Amanda Leduc and Rasheera Dopson, who share their unique narratives of change and empowerment.
The Spontaneous Mutation podcast aims to reclaim the narratives around facial difference. In science, a spontaneous mutation is a genetic change with no known cause. This was the explanation songwriter and host Halley Elwell was given by doctors when she was diagnosed with Neurofibromatosis at age 11. No one else in her family has the condition, which causes tumors to grow on nerves and has affected the appearance of her jaw, chin, and neck.
For this project, Elwell decided to use the term as an artistic lens. She knew what happened when a gene mutated and how it made her appearance change, but what happens when a spontaneous mutation occurs in art, conversation, or your life?
Over the course of 7 episodes, Elwell and 5 guests explore the complex and profound insights that come from exploring the lived experiences of disability and facial difference.
In this episode, titled “Dear Lucy,” Halley invites activist and Faceout Project founder Sora Kasuga to the Spontaneous Mutation podcast to discuss the legacy of Lucy Grealy’s memoir, Autobiography of a Face, published in 1994.
Sora discusses her many spontaneous mutations in life and posits that we have not yet realized the social aspects of what it means to fully accept yourself as different and that might be the evolutionary key to advancing our society forward. She discusses her own ‘coming out’ story and honors the “disability doulas” who have helped her along the way, mentioning Alice Wong’s Disability Visibility anthology as a starting point.
The Music for this episode is “Dear Lucy.”
Bio: Sora Kasuga is the founder of the FaceOut Project, an activism hub and home for the global Facial Difference community to come together and collectively face out toward the world. Sora is a writer, a speaker, a model, circus artist, and face equality activist.
Sora’s experiences as a Japanese American, neurodivergent, queer person with a facial difference have informed and inspired their work in what Sora calls the “beautiful and challenging intersection of race, gender, sexual orientation, and disability.”
Links:
Faceout Monday Night Activism Cohort
Adult Facial Difference Community facebook group
Autobiography of a Face by Lucy Grealy
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