Part Four of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Free of Judgment,” “Layered Lives,” and “Humans First, Labels Later.”  Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she shares about feelings amongst caregivers and the importance of physicians not only validating the experiences of caregivers, but also encouraging them to seeks out resources as a valuable member of the team. Early episodes from Season One are referenced in this 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.

References:

Green, S. E. (2003). They are beautiful and they are ours: Swapping tales of mothering children with disabilities through interactive interviews. Journal of Loss and Trauma, 8(1), 1–13. https://doi.org/10.1080/15325020305875

Currie, G., & Szabo, J. (2018). “It is like a jungle gym, and everything is under construction”: The parent’s perspective of caring for a child with a rare disease. Child: Care, Health and Development, 45(1), 96–103. https://doi.org/10.1111/cch.12628

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

Rupert, D. J., Moultrie, R. R., Read, J. G., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W. (2014). Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Education and Counseling, 96(3), 320–326. https://doi.org/10.1016/j.pec.2014.05.015