Part Two of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Atypical Motherhood” and “Rare Reality” - Erica shares the unexpected reaction to sharing her daughter’s birth story. Using current research and scholarly work, she describes common and contradicting societal expectations of parenting that impact caregivers to children with a rare or undiagnosed disease. Early episodes are referenced in this Part Two episode.

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Music by amiina 

Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research and References can be found HERE. A list of researchers, scholarly work, and authors referenced in this episode is provided below.

Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10. https://doi.org/10.1080/17482631.2020.1725362

Lin, E., Durbin, J., Guerriere, D., Volpe, T., Selick, A., Kennedy, J., Ungar, W. J., & Lero, D. S. (2018). Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review. Health & Social Care in the Community, 26(5), 613–634. https://doi.org/10.1111/hsc.12546

Germeni, E., Vallini, I., Bianchetti, M. G., & Schulz, P. J. (2018). Reconstructing normality following the diagnosis of a childhood chronic disease: Does “rare” make a difference? European Journal of Pediatrics, 177(4), 489–495. https://doi.org/10.1007/s00431-017-3085-7