Shaming, blaming, and reframing disability: depictions of Tourette syndrome and family dynamics within youth literature

Purpose This study aims to present a complex analysis of the ways family dynamics are represented in six books for youth that depict characters with Tourette Syndrome (TS). In particular, this study highlights how characters with TS navigate layers of shame for being misunderstood in school and society, and how family dynamics either reinforce or support characters from internalizing ableism and the attendant pain and shame associated with being perceived as “abnormal.” Design/methodology/approach The process for selecting YA books began with a wide search of recommended book lists available online and curated by the disability community, such as disabilityinkidlit.org and the Tourette Association of America. The authors sought books with at least one main or secondary character with TS. Using questions informed by critical content analysis (Short, 2016), the authors reads each book and generated notes and data charts on themes and patterns, which included how interactions between characters with TS and their parents and siblings were depicted. After the authors read each book, they met for 90 min to discuss their notes, expanded their data charts and generated themes to address their research question: How do characters with TS navigate pain within family dynamics? Findings Findings support that all six books reveal progressive and problematic portrayals and messages about disability and human differences. Characters with TS in the books the authors studied experience family dynamics that are fraught with pain. Findings also demonstrate that characters with TS act with agency and resilience to resist shame within family dynamics, educating their parents and/or siblings in ways that are healing and restorative within the family dynamic. Originality/value The analysis of the six books provides support for educators to build knowledge about how disability is constructed within children’s and youth literature to pose critical questions about problematic portrayals and to build a future for families that is inclusive of disability and values progressive notions about human differences.