Season One

Erica 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.

 

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Atypical Truth Podcast

Episode Transcription Provided
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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 rare diseases, disabilities, and complex medical conditions.

If you would like to join me to share your story and conversations, please don't hesitate to contact me!

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Meet the Creator & Host

Erica Jolene

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