\n\tWhen the advocate Jess Thom heard about a person with Tourette\u2019s \u201cticcing\u201d the BAFTAs, she had a familiar feeling: dread.<\/p>\n
Thom has Tourette Syndrome<\/a>. And the incident involving John Davidson<\/a> brought to the surface many of the misunderstandings and confused reactions she has spent her life trying to fight.<\/p>\n \u201cThere are a lot of myths and oversimplifications about Tourette Syndrome, and a global frenzy is not the best place to have a conversation about them,\u201d the U.K.-based Thom, 45, said by Zoom from her home Monday evening as she reflected on the events. \u201cAnd it\u2019s all happening in a climate with increased\u00a0hostility to disabled people, with threats to Medicaid and the ADA.\u201d<\/p>\n \n\tDavidson at the ceremony engaged in \u201cticcing,\u201d\u00a0the term for when people who have Tourette Syndrome, or TS, involuntarily say or do something that can have the effect of making others uncomfortable. In this case, the executive producer and inspiration for the Tourette\u2019s-focused winner\u00a0I Swear called out<\/a> a series of curses and insults, as well as a racial slur when Black presenters Delroy Lindo<\/a> and Michael B. Jordan took the stage. The moment blew up after the BBC kept the slur in the tape-delayed broadcast two hours later and even for a time on a streaming replay. (It has since been edited out of the latter; the BBC apologized<\/a> for \u201cstrong and offensive language.\u201d)<\/p>\n Thom and others in the TS community say the award-show incident highlights the lack of understanding that has beset the Tourette\u2019s community for years. Among the biggest misconceptions is over \u201coppositional ticcing,\u201d which essentially involves saying the worst possible thing one can say in the room (the involuntary urge to yell \u201cbomb\u201d in an airport, for instance).<\/p>\n \u201cPeople don\u2019t understand that it\u2019s contextual, and that part of the ticcing is saying that exact damaging thing,\u201d Thom said. Instead, she noted, people assume this thing is being said because someone \u201csecretly\u201d believes it or is mindfully trying to hurt somebody. Thom founded the advocacy group Tourettes Hero, which, among other goals, seeks to help people understand TS and also fights for disability benefits on behalf of people who live with it.<\/p>\n \n\tThe U.K. TS charity Tourette\u2019s Action also sought to clarify this point with a statement<\/a> on Monday while expressing disappointment with how the story was playing out. \u201c[I]t is vital that the public understands a fundamental truth about Tourette syndrome: tics are involuntary. They are not a reflection of a person\u2019s beliefs, intentions, or character,\u201d the organization said. \u201cPeople with Tourette\u2019s can say words or phrases they do not mean, do not endorse and feel great distress about afterwards. These symptoms are neurological, not intentional.\u201d<\/p>\n The group continued, \u201cThe backlash from certain parts of the media has been extremely saddening, particularly given how hard John works to raise awareness and understanding. What should have been a night of celebration for him became overwhelming, and he made the difficult decision to leave the ceremony halfway through. This moment reflects exactly what I Swear shows so openly: the isolation, misunderstanding and emotional weight\u2026The price of being misunderstood is increased isolation, risk of anxiety and depression and death by suicide.\u201d<\/p>\n Another misconception lies with what the medical community terms \u201ccoprolalia,\u201d\u00a0 which involves the use of obscenities or other inappropriate words and gestures, which Davidson also engaged in. Though there is a firm neurobiological basis for these actions, people can react to them, advocates say, in a way that does not fully take that into account and instead believe they have an intent to shock.<\/p>\n The New York City public advocate Jumaane Williams posted <\/a>on social media Monday that his own experience with TS compelled him to correct misperceptions.\u00a0\u201cAs the first known person to be elected with\u00a0#Tourettes<\/a>. As a person who has\u00a0#coprolalia<\/a>\u00a0and also tics the \u2018N-word.\u2019 As a Black man I have some lived views and thoughts to share tomorrow.\u00a0#StayTuned<\/a>\u00a0#bafta<\/a>\u00a0 (Feel free to google coprolalia before then),\u201d he wrote.<\/p>\n TS is a condition that involves both motor and vocal tics. A very high number \u2014 composing about 1 percent \u2014 of all young people worldwide are believed to have it, with about 10-15 percent of those also having\u00a0coprolalia<\/a>. For many, the severity dramatically decreases as they reach adulthood, but the CDC still estimates that an estimated 1.4 million people, children and adults, have TS in the United States.<\/p>\n The entertainment industry has sought to spotlight many neurological conditions in the past decade, such as with the autism-centric ABC series\u00a0The Good Doctor. Historically, though, Tourette\u2019s has often more been seen on-screen as a one-off novelty, as with an infamous vintage L.A. Law episode<\/a>.<\/p>\n A breakthrough of sorts occurred in 2006 with a\u00a0Big Brother U.K. contestant, Pete Bennett; he has TS and brought visibility to it. And pop-culturally, the syndrome has become especially known in the last few years thanks to Baylen Dupree, a Gen Z woman with TS who gained a TikTok following and, last year, a TLC reality show about her experience, along with Billie Eilish, who has said she has it too.<\/p>\n \n\tA spokeswoman for Eilish said she was not available Monday to comment on the BAFTAs but pointed a reporter to previous videos, which included an interview with David Letterman <\/a>on his Netflix show in 2022 in which she began ticcing and then told a concerned Letterman that some people\u2019s responses get under her skin.<\/p>\n \u201cThe most common way that people react [to a tic] is they laugh, because they think I\u2019m trying to be funny,\u201d she said. \u201cAnd I\u2019m always left incredibly offended by that.\u201d She said she hoped talking more about it could lead to wider acceptance and a realization of how common it was. \u201cSo many people have it that you would never know,\u201d she told Letterman.<\/p>\n Part of the challenge socially is that the ticced words can do real harm even as the person causing the harm deeply wishes not to be doing so. In a culture simultaneously concerned with accountability and taking into account the marginal, that can make for a narrow line.<\/p>\n