For Black people living with Tourette syndrome, the British Academy Film and Television Arts Awards incident earlier this week where a vocal tic manifested as a racial slur while two Black stars of the movie "Sinners" were onstage has left them with complicated feelings.
"It's been pretty difficult because I feel like there's such a clash between both sides," said Chloe Winston, 24, who experiences coprolalia, the same verbal tic as John Davidson, the BAFTA nominee and Tourette syndrome advocate who yelled the slur. "A tic is not intentional, but it still causes harm. And I think that does require accountability."
Davidson's utterance just as Michael B. Jordan and Delroy Lindo were presenting the first award of that night's ceremony ignited a firestorm that overshadowed Sunday's BAFTAs. There was immediate outrage that the actors and other Black attendees were subjected to the slur. Then there was frustration from the disability community at a lack of understanding about Tourette syndrome. But anger has been loud and widespread for broadcaster BBC because of its decision to allow the racial slur to air uncensored two hours after the live event. Most live awards shows likethe Oscarsoperate on a seconds-long tape delay.
The BAFTA and BBCapologiesalso were criticized as insufficient. The BBC plans to edit it out of its iPlayer streaming service.
The ordeal has compelled Black people with Tourette syndrome, from politicians to content creators, to speak out. They assert that showing empathy for those dealing with the disorder doesn't minimize the pain felt by the Black community. There needs to be acknowledgment of the harm, some have said. Others also worry that misinformation or stereotypes about Tourette syndrome could exacerbate racial profiling or discrimination for Black people who live with it.
Now, advocacy groups are using the BAFTA moment to try to grow existing support networks focused on Black people who feel isolated by Tourette syndrome.
What is Tourette syndrome and coprolalia?
Tourette syndrome is a neurodevelopmental disorder characterized by sudden, involuntary movements and/or sounds called tics, according to the Tourette Association of America. These can be motor and vocal tics. Tics can range from mild and inconsequential to moderate and severe and can even be disabling in some cases.
"We know that there's this sort of sensory and motor loop happening. And again, similarly in the vocalizations, they typically start with things like coughing, sniffing, or other just non-specific sounds, said Dr. Jeremiah Scharf, a tic disorder specialist at Massachusetts General Hospital.
In a majority of people, the symptoms begin to emerge during elementary school age and peak between ages 10 and 14, according to Scharf. Roughly 1.4 million people in the U.S. live with Tourette syndrome or a persistent tic disorder, according to the Centers for Disease Control and Prevention.
Coprolalia is "the involuntary utterance of obscene and socially unacceptable words and phrases." The Tourette Association of America estimates between 10%-15% of people with Tourette syndrome live with it. The organization has cautioned against making assumptions about the person based on the content of the tic.
These vocal outbursts — typically vulgarities and insults — are a biological condition that can sometimes be triggered by stress such as not enough sleep or being upset, Scharf said. The tics are hard to stop and involuntary — almost like a sneeze.
"Unfortunately, for this subset of people, it is incredibly disabling because they don't want to say those things. It's very distressing to them," said Scharf, who was talking in general terms and not about the BAFTA awards incident specifically. "They feel significant remorse about it."
Treatment for severe tic disorders can range from medication to behavioral therapies. Retraining the brain to handle tics is "takes an enormous amount of practice in terms of recognizing when the tics are coming," Scharf said. But, there is no one-size-fits-all solution.
Incident stirs up struggles against racism and ableism
Jhónelle Bean, an American Sign Language interpreter who is Black and has Tourette syndrome, took to TikTok after seeing so much "all-or-nothing" discourse around the BAFTA awards. Her video about the "complexity and duality of the situation" has garnered over 3 million views.
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"Two things can be true at the same time," Bean said. "Just because he ticced that does not mean it was intentional. But then also that still caused hurt or harm for people that heard it, which again is why I'm mad at the BAFTAs and the BBC for keeping it in the broadcast in the first place because they had the power to take it out."
The incident also brought up "ableism" comments that were flat-out discriminatory. They included that Davidson, the man who shouted the racial slur, "should have been locked away, he should've had a muzzle, things like that," Bean said.
At the same time, Bean disagreed with some engaged in the social media discourse who said those who took offense over the N-word needed to "get over it."
Jumaane Williams, New York City's public advocate who is Black and has Tourette syndrome, said it can be "painful both physically and mentally" to hold in a tic. As someone who has coprolalia too, Williams gives Davidson some credit for removing himself from the situation though "maybe he could have moved a little sooner."
"For me, it was all about making sure we're practicing care. And I don't think that happened for the two actors that were there or the Black folks who were there or people who didn't want to hear the word," Williams said.
A demand for support groups for Black people with Tourette syndrome
There's always going to be inherent concern if you are Black with Tourette syndrome or any tic disorder, said Reice Griffin, 20, who is a Tourette Association of America rising leader and ambassador. She has had people witness her tics and assume she uses drugs or is typically belligerent. And interacting with police can be even more stressful.
"Law enforcement is not well equipped to deal with Tourette syndrome, but also historically, as a Black person, you never really want to be around law enforcement," Griffin said.
The association, which offers printable "I Have TS" cards, is actively trying to offer more support for people of color.
Griffin recently attended a virtual support group meeting for Black young adults, and she has been speaking at schools and to groups to become more comfortable with herself.
"I thought that because I had Tourette syndrome that, like, public speaking was out the window," Griffin said. "If I could help another young Black girl with Tourette syndrome not feel as alone or help people get diagnosed — that's the dream."
Williams, the New York City public advocate, agrees there is not enough support for Black people with Tourette syndrome. He tries to help by speaking about his own life. That has led to him hearing directly from New Yorkers.
"Sometimes in the street or an event people will bring their family member up which is always a pretty emotional space for me because when I see the kid, I know what they're going through," Williams said.
Tang reported from Phoenix.
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