When Jess Thom, an advocate for Tourette Syndrome (TS), heard about a person with TS “ticcing” at the BAFTAs, she felt a wave of dread. Thom, who lives with Tourette’s, recognized the event as a spotlight on the challenges and misunderstandings surrounding TS.
During the award ceremony, John Davidson, the inspiration for the Tourette’s-focused film I Swear, displayed involuntary tics. These included shouting curses and an offensive slur while presenters Delroy Lindo and Michael B. Jordan were on stage. This moment caused a stir, particularly after the BBC included it in their broadcast, prompting a swift apology and edits.
Thom expressed her concern about how the public often misunderstands Tourette’s. She pointed out that many people think tics reflect a person’s true beliefs or intentions. Instead, they are involuntary—part of living with TS. She founded the advocacy group Tourettes Hero, which aims to educate others while fighting for disability benefits for those affected by TS.
In a statement, the U.K. charity Tourette’s Action emphasized the involuntary nature of tics. They noted that individuals with TS can say distressing things they don’t truly believe. Davidson himself left the event early due to the distress his tics were causing, further highlighting the emotional burden many with TS face.
Interestingly, a significant number of young people—around 1 in 100—are affected by TS, with 10-15% experiencing coprolalia, or involuntary swearing. According to the CDC, approximately 1.4 million people in the U.S. are affected by TS.
While representations of neurological conditions have improved in recent years, such as in films and TV shows, Tourette’s often gets portrayed as a novelty. A pivotal moment for awareness came in 2006 with Big Brother U.K. contestant Pete Bennett, who brought visibility to the syndrome. Recently, social media influencers like Baylen Dupree have further raised awareness about living with TS.
Billie Eilish, another well-known figure with TS, has also shared her experiences, highlighting the challenges of being misinterpreted as trying to be funny when tics occur. “People laugh because they think I’m trying to be funny,” she said in an interview. “It’s frustrating because it’s not a joke.”
The BAFTAs released a statement recognizing Davidson’s TS, explaining that the offensive language should not be viewed as intentional. They acknowledged the pain it caused while also apologizing to those affected.
Thom urges that events with individuals who have TS should prepare others to foster understanding. Living with Tourette’s is not just about occasional incidents; it involves constant management of tics. Thom hopes that by raising awareness, society can foster a sense of empathy, recognizing that those with TS face ongoing challenges every day.
In summary, the incident at the BAFTAs serves as a reminder of the importance of understanding and compassion for those with Tourette’s. It’s not just about one moment; it’s about a lifelong journey of navigating tics while seeking acceptance and awareness.
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