The School and Social Experiences of Tourette Syndrome through the First-Person Perspective of Youth: A Theatre-Based Approach to Community-Based Research

Abstract

Tourette Syndrome Plus (TS+) is a “neuropsychiatric or brain-based condition that causes people who have it to make involuntary sounds or movements called tics” (Tourette Canada, n. d., para. 1). Individuals with TS+ may also have a number of associated disorders such as OCD, ADHD, and Anxiety Disorder. Community-based research and popular theatre activities were used in this research to explore social and educational issues that may arise for youth with TS+ aged 14-15. The topic of TS+ is viewed through social models of disability and utilizes a transformative worldview. This research explores the role of theatre in building self-advocacy skills, increasing self-confidence, and/or improving upon socialization skills for youth with TS+. Youth with TS+ participated in weekly theatre sessions to create a script that demonstrated their experiences with TS+. This script was performed to an audience of TS+ community members, as well as members of the University of Alberta community. The collaboratively created script, titled “Ditched,” follows the character of Thomas as he engages with the notions of bullying, popularity, and exclusion. This research found that youth with TS+ may carry with them internalized loneliness, guilt, and/or shame for having TS+. These internalized feelings may manifest in youths’ withdrawal from social situations, and may also impact youths’ self-confidence and their ability to self-advocate. This research concludes that popular theatre provides a powerful space for youth with TS+ to express internalized feelings, and build self-advocacy, self-confidence, and socialization skills. Being that the researcher is also an adult with TS+, the study conflates the youth participants’ present experiences of TS+ with the researcher’s past and present experiences of TS+.