For the Tourette Syndrome Community, the BAFTAs Brought on a Familiar Dread-Like Feeling

When the advocate Jess Thom heard about a person with Tourette’s “ticcing” the BAFTAs, she had a familiar feeling: dread.

Thom has Tourette Syndrome. And the incident involving John Davidson brought to the surface many of the misunderstandings and confused reactions she has spent her life trying to fight.

“There 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,” the U.K.-based Thom, 45, said by Zoom from her home Monday evening as she reflected on the events. “And it’s all happening in a climate with increasedhostility to disabled people, with threats to Medicaid and the ADA.”

Davidson at the ceremony engaged in “ticcing,”the 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’s-focused winnerI Swear called out a series of curses and insults, as well as a racial slur when Black presenters Delroy Lindo 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 for “strong and offensive language.”)

Thom and others in the TS community say the award-show incident highlights the lack of understanding that has beset the Tourette’s community for years. Among the biggest misconceptions is over “oppositional ticcing,” which essentially involves saying the worst possible thing one can say in the room (the involuntary urge to yell “bomb” in an airport, for instance).

“People don’t understand that it’s contextual, and that part of the ticcing is saying that exact damaging thing,” Thom said. Instead, she noted, people assume this thing is being said because someone “secretly” 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.

The U.K. TS charity Tourette’s Action also sought to clarify this point with a statement on Monday while expressing disappointment with how the story was playing out. “[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’s beliefs, intentions, or character,” the organization said. “People with Tourette’s can say words or phrases they do not mean, do not endorse and feel great distress about afterwards. These symptoms are neurological, not intentional.”

The group continued, “The 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…The price of being misunderstood is increased isolation, risk of anxiety and depression and death by suicide.”

Another misconception lies with what the medical community terms “coprolalia,” 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.

The New York City public advocate Jumaane Williams posted on social media Monday that his own experience with TS compelled him to correct misperceptions.“As the first known person to be elected with#Tourettes. As a person who has#coprolaliaand also tics the ‘N-word.’ As a Black man I have some lived views and thoughts to share tomorrow.#StayTuned#bafta (Feel free to google coprolalia before then),” he wrote.

TS is a condition that involves both motor and vocal tics. A very high number — composing about 1 percent — of all young people worldwide are believed to have it, with about 10-15 percent of those also havingcoprolalia. 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.

The entertainment industry has sought to spotlight many neurological conditions in the past decade, such as with the autism-centric ABC seriesThe Good Doctor. Historically, though, Tourette’s has often more been seen on-screen as a one-off novelty, as with an infamous vintage L.A. Law episode.

A breakthrough of sorts occurred in 2006 with aBig 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.

A 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 on his Netflix show in 2022 in which she began ticcing and then told a concerned Letterman that some people’s responses get under her skin.

“The most common way that people react [to a tic] is they laugh, because they think I’m trying to be funny,” she said. “And I’m always left incredibly offended by that.” She said she hoped talking more about it could lead to wider acceptance and a realization of how common it was. “So many people have it that you would never know,” she told Letterman.

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.

On Monday, the BAFTAs attempted such a tiptoe. The organization released a statement that “one of our guests, John Davidson MBE, has Tourette syndrome and has devoted his life to educating and campaigning for better understanding of this condition. Tourette syndrome causes involuntary verbal tics, that the individual has no control over. Such tics are in no way a reflection of an individual’s beliefs and are not intentional.”

But it also said that “our guests heard very offensive language that carries incomparable trauma and pain for so many. We want to acknowledge the harm this has caused, address what happened and apologize to all,” adding that it wasapologizing “unreservedly” for the slur.

From the stage, the man who plays Davidson,Robert Aramayo (he won lead actor Sunday), tried to simply urge sympathy for the man who inspired his character. “John Davidson is the most remarkable man I’ve ever met,”he said upon receiving a different honor. “For people living with Tourette’s, it’s us around them who help them define what their experience is. So, to quote the film, they need support and understanding.”

Davidson himself released a statement that said, “I am and always have been deeply mortified if anyone considers my involuntary tics to be intentional or to carry any meaning,” adding “I chose to leave the auditorium early into the ceremony as I was aware of the distress my tics were causing.”

Thom said that the best way to handle a situation in which a person with Tourette’s will be present is for organizers to prepare everyone in the room so that there are as few shocks as possible. She attended the BAFTAs several years ago herself due to a TV show she was working on about TS and felt organizers did a good job in ensuring a smooth night for all; she is less sure, she said, if all attendees and presenters were sufficiently prepped Sunday night.

Speaking generally of TS, Thom described the “emotional complexity of living with a body and a mind that behaves in ways that are shocking and unexpected and that does not reflect who you are.”

She hopes that, for all the ways the incident has been misunderstood, it ultimately helps people realize that those living with TS are not just experiencing an occasional incident but grapple in a state of ongoing challenge.

“It can be sensational and surreal and strange [to encounter someone with TS],” she said. “But you have to realize that John would have been ticcing before the ceremony and ticcing at the ceremony and ticcingon the subway home. People with Tourette’s are constantly managing it.”