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Erica Stearns is a disabled adult, researcher, advocate, and proud mother of two young children who share the same rare disease. This genetic mutation on the LSS gene has resulted in microcephaly, drug-resistant epilepsy, cortical visual impairment, cerebral palsy, global developmental delays, and several other complex medical conditions.

Through intimate conversations with individuals and professionals who make up their “tribe,” Erica reflects on how her medically complex childhood prepared her for the many roles she would fulfill as a parent and advocate for her two medically fragile children.

Meet the Founder & Host

Erica Stearns
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Welcome to Atypical Truth

Growing up with disabilities and now as a mom of two children with disabilities, I created this podcast to amplify the stories of those within my community - the community of people living with rare diseases, disabilities, and complex medical conditions.

It is a true passion to collaborate with others to build their storytelling skills in an effort to help them use their storied life experiences as a tool for advocacy and change.

Contact me if you would like to join me for a supported storytelling collaboration.

Get updates on new episodes!

Carefully designed and articulated project.

 

Relevant and brave topic. Pushing against the 'tyranny of cheerfulness' is a noble cause.

I commend this project for providing a vulnerable space for people who often aren't allowed vulnerability. Using a podcast and autoethnography as a means of the digital humanities/social sciences is an ambitious prospect and a way to bridge the public, the personal, and the academic.

Margaret Messer Research Grant

a noble cause

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