A popular Kiwi content creator documenting life with Tourette syndrome says he has been “permanently banned” from TikTok after he presented a vocal tic during a livestream.
Leighton Clarke garnered 4.7 million followers on his TikTok account @uncletics – one of the largest followings in New Zealand – before his account was banned seemingly indefinitely over the weekend.
Taking to Instagram and Facebook, where he still maintains a combined following of more than one million, Clarke said he’d spent seven years building a platform on TikTok and “showing the world what Tourette’s actually looks like” before his account was banned.
“Millions of you came along for the ride. We laughed, we educated people, and we proved that a bloke with Tourette’s could build a massive community just by being real,“ Clarke said.
“And now it’s gone. My account was permanently banned after a livestream because of a vocal tic. Something I physically cannot control.
“It wasn’t aimed at anyone. It wasn’t hate. It was Tourette’s.”
The 32-year-old, who lives in Hamilton with wife Olivia, said the sudden ban highlighted the “brutal reality of living” with Tourette’s.
“Sometimes the very thing you are trying to raise awareness about is the exact thing that gets you punished.
“Seven years of work, thousands of videos, a community of millions, my livelihood, all wiped out in a moment because of a neurological condition.”
Clarke, expressing gratitude to his fans for their support over the years, said he’d already created a second account but was seeking a “proper review” of TikTok’s decision to ensure his vocal tic wasn’t taken out of the context of his condition.
“This might be the end of the account. But it’s not the end of Uncle Tics,” Clarke said.
Olivia called the ban “truly heartbreaking”, telling her followers Clarke had worked “incredibly hard” to raise awareness and educate people on what life is like with Tourette’s.
“Hopefully @tiktok @tiktok_australia carefully reviews the appeal and understands that the content that led to this ban is directly related to his disability,” she said.
“These tics can be deeply upsetting and embarrassing for Leighton, and banning him permanently for something outside of his control is incredibly unfair.”
Last month, Clarke had his Local Hero nomination at the New Zealander of the Year Awards rescinded for producing content that “wasn’t consistent” with the values underpinning the awards, the organisers said in a statement.
Clarke told ex-boxer Dave Letele on his Unfiltered podcast the withdrawal came after backlash to two videos he’d posted following his nomination.
The ban from TikTok comes after last week’s Bafta Awards, where Tourette’s activist John Davidson inadvertently made headlines when he interrupted the ceremony’s live broadcast with a racial slur.
Davidson’s tics first presented at the ceremony with him yelling “shut the f*** up” during Bafta chairwoman Sara Putt’s opening remarks.
He later said the N-word while actors Delroy Lindo and Michael B. Jordan were presenting the evening’s first prize.
University student Oliver Dawson, who was diagnosed with Tourette’s at 13, told the Herald he believed Davidson’s interruptions were likely anxiety-induced tics, given nervousness and stress can significantly increase the frequency, intensity and chance of tics presenting.
“It is devastating, to say the least,” Dawson said.
“It was really brave of John to be at the Baftas, and I’m really glad he was there because that biopic may have been one of the best things that has come of his kind of career.”
Despite tics – muscular or vocal – being involuntary, knowing that it would be inappropriate for them to present in a certain environment can be distressing in itself, Dawson said.
“The anxiety is only going to make me tic worse and potentially is going to make me tic in ways that are worse for that situation,” Dawson said.
“I don’t have control over that.”
A 2023 petition was put forward to the Parliament’s Health Select Committee to recognise Tourette’s as a disability and advocates are continuing to press the Ministry of Health for official recognition to enable access to more support and services for people living with Tourette’s.
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