The Superstars of Tourette’s TikTok
How disability influencers are using TikTok to fight stigma
Halfway through our conversation, Glen Cooney calls me a four-letter word often cited as the most offensive in the English language. But that’s okay. He doesn’t mean it.
Cooney has Tourette’s syndrome, which causes tics, twitches, and—in some people—a symptom called coprolalia, which the Tourette Association of America characterizes as “the involuntary outburst of obscene words or socially inappropriate and derogatory remarks.” Living with the disorder is tiring, because of both the tics themselves and the effort of trying to repress them. Coprolalia adds to the burden. Cooney, a 42-year-old who runs a window-cleaning business on the British island of Guernsey, tells me that he recently approached a woman on a mobility scooter and shouted in her face that she was lazy. Soon after that, when he saw nuns in the grocery store where his wife works, he shouted “Nuns on the run!” before observing out loud that “all priests are pedophiles.” He also tells me that he has just come back from a store, where he reflexively made praying hands at a Chinese woman and said “Konichiwa.” He sighs. “I know that’s Japanese, but my brain doesn’t know that.”
On Twitter, such behavior would get Cooney canceled a dozen times a day, but on TikTok, it has made him a star. He has 3.4 million followers on the video app, as well as a solid income from merchandise festooned with the remarks that have sprung, irrepressibly, from his subconscious and onto his TikTok feed. (When we talk over Zoom, he is wearing a sweatshirt that reads All my victims are in the freezer, next to the pizza.) The money he makes from product sales, and from live-streaming, is not enough to give up his day job. But he says that it could be, if he spent more time pursuing sponsorship deals. Welcome to the world of disability influencers.
Cooney is one of a surprising number of popular TikTok creators who use the platform to talk about their physical anomalies, cognitive impairments, or medical conditions. Now that I follow a few of these accounts, my algorithmically generated For You feed—the closest thing TikTok has to a homepage—offers me a new face and a new story almost every time I check the app. I see Chloe Bean, an American woman who lost all her hair to alopecia; Struan Kerr-Liddell, a Scottish man paralyzed in a sporting accident, who shares an account with his wife, Nicole; the Australian Stephanie Browitt, who suffered burns on 70 percent of her body after being caught in a volcano eruption, and is slowly rebuilding her skin through a series of grafts; and a woman who goes by @princxssglitterhead, who shares with 1.5 million people the experience of having all your teeth fall out as a rare complication of pregnancy.
Their videos, and others like them, illuminate the everyday lives of people with disabilities and provide insights often missing from journalism and popular culture: how to navigate medical bureaucracy when you have a rare or chronic condition, how to adapt your home or work environment to offset an impairment, how to deal with the intrusive questions of strangers. One in four Americans has a disability, but without culture-war topspin—without easy villains or social-media talking points—the day-to-day problems they face typically get little attention. TikTok lends itself to an intimate, confessional tone. And unlike Twitter, which has become dominated by journalists, politicians, and other elite tone-policers, TikTok is a space where videos can go viral without provoking righteous anger or hyper-partisan outrage. It’s where normie can speak truth unto normie.
The general vibe on disability TikTok is: I don’t have any teeth, so let me explain how dentures work. Or: Here’s how you pick up your baby when you’re paralyzed from the waist down. In one of Browitt’s videos, she shows her scarred left flank, joking in the caption about her response when surgeons told her they had to remove a significant amount of tissue: UHHH sick looks like I have abs.
Compared with other online spaces, TikTok often feels like a paradise of judgment-free positivity. On most of the internet, just asking questions has become shorthand for trolling. But who is born knowing what it’s like to swear uncontrollably in a grocery store? The prevailing ethos on TikTok is that wondering about other people’s lives is only natural, and that pretending not to notice someone else’s condition isn’t necessarily polite. “Most people can tell when people are being ‘gawked at’ and when people approach from well-intentioned curiosity,” Anna Morell, the communications manager of the advocacy group Disability Rights UK, told me by email. Warren Kirwan, the media manager at the disability-equality charity Scope, added: “Familiarity is one of the best ways to break down barriers. The more people know about disabled people, they lose that awkwardness.”
Glen Cooney’s story suggests that greater visibility can be powerful for people with disabilities. His tics started around age 10, but no one recognized that he had Tourette’s syndrome or attention deficit disorder (which for many people accompanies the condition) during his childhood. His father, Cooney recounts, told him to shut up and stop rolling his eyes. His school thought he was merely naughty. “This was the 1980s and … penis in the face—” Hearing himself say that, Cooney grins. “I lost my train of thought there. Oh yeah, they just told me I was disruptive.” He was given antidepressants, which did nothing for him, and gradually developed strategies to hide the tics. When he worked in a warehouse and would throw cases of food around, “people just used to think I was a bit mad, you know.” The coprolalia became more noticeable after his father died in 2013, which sent Cooney into a “spiral.” Then he and his wife watched a reality show called The Undateables, which had a participant with Tourette’s syndrome. “And my wife said, ‘That’s a bit like you.’ The penny dropped.” He received a formal diagnosis two years ago, and the British charity Tourettes Action now features his story on its website.
Within disability TikTok, those with Tourette’s syndrome—and specifically coprolalia—occupy a prominent place. The disorder is visually and aurally distinctive, and lends itself to being documented on video. Zara Beth, a 16-year-old from northwest England who uses her first and middle names online, went viral last year with a clip of her body repeatedly recoiling from a COVID-19 swab. Though she has had tics since the age of 7, she told me she was not diagnosed until after the COVID-19 shutdowns began. (She believes that the stress of the pandemic plus exams made her condition worse.) On TikTok, she quickly found a network of others with the condition, and built up a fan base of 1.7 million followers. Soon, she realized that she wouldn’t have to tell her classmates about her condition when her school reopened. They had all seen her videos.
Cooney joined TikTok last year after he brought his young sons their evening meal and, just before he could give it to them, threw it over his head, shouting, “Fries to go!” His older son Daniel, with the digital shrewdness of a 9-year-old, said that this kind of thing would make great viral content. Daniel was right: The videos of Cooney cooking with his kids are regularly his most popular. The one where he bakes a trifle, an improbable British dessert featuring jelly, custard, and cream—you can already see the danger—features Cooney singing Beyoncé lyrics and hitting himself in the face with a spatula. It has 11.7 million views.
Disability has long been a cruel source of jokes for stand-up comedians and Hollywood films. But such jokes have become less and less acceptable in mainstream culture, and in August 2016, pollsters rated then-candidate Donald Trump’s mockery of a reporter with a joint condition as one of his most unappealing public statements. Still, Trump won the U.S. presidential election that year; for some voters, his casual hostility to people unlike himself only enhanced his appeal. Disability jokes still flourish on the kind of internet forums where making deliberately offensive statements is treated as proof of the continued existence of free speech. TikTok creators offer the best rebuttal to this group, because their videos are humanizing, rather than hectoring. They might help these edgelords—and high-school bullies who might not listen to lectures about being kind to others—realize that their punch lines have feelings.
Yet compassionate and well-meaning people are prone to another form of dehumanization—seeing people with impairments as either suffering angels or perpetual children, not as messy, complicated adults with a sex life and a sense of humor. India Atkinson, a 21-year-old college student from Northern Ireland, is one of the most successful TikTok stars fighting against this latter tendency. She has … well, I’ll let her describe it: “I call it my baby hand,” she says. The medical term is symbrachydactyly, a congenital disorder in which her right hand has four tiny boneless fingers and a stump of a thumb. Atkinson bills herself as “CEO of One Hand Humour.” A typical video shows her using her small hand to apply makeup—it’s the perfect size to use as a contouring sponge, as she demonstrates in one video—or negotiating with a manicurist to pay half price because she needs only five nails painted.
Atkinson’s first big hit showed her putting her hair into a ponytail in front of colleagues who were amazed at her virtuosity. Her videos emphasize that she is not suffering from symbrachydactyly, she is living with symbrachydactyly. “I am in charge, and I don’t sacrifice anything, such as my dignity, just for a laugh or to get one viral video,” she told me. She says she once flinched at seeing a TikTok user with a similar condition acting as the butt of the joke rather than the joker, but Atkinson doesn’t see her own videos as part of a viral freak show.
That F-word—freak—hangs over the conversation about disability on TikTok, because of the long, troubling history of asking people whose bodies looked different to display them to gawking crowds. In the late 19th and early 20th centuries, circusgoers could visit racist “human zoos” and see “pinheads” (people with microcephaly), conjoined twins, and people with rare skin disorders. Now as then, many people with disabilities find that their economic options are limited, which complicates the question of whether all those seeking the social-media limelight are doing so entirely of their own free will. Like other platforms, TikTok incubates its own forms of cruelty—such as the “New Teacher Challenge,” in which parents scare their children with photos of people with disabilities. These influencers are asking the public to trust that they aren’t being demeaned by viral exposure, even when some of that attention is inevitably negative.
That concern is less pressing in Atkinson’s case, because she is the sole author of her videos: She edits and uploads them herself. Cooney does the same. When the camera treats people with disabilities as objects rather than subjects, though, the line between joker and punch line is messier. How should viewers feel about the videos of the comedian Ross Smith, for example, who recently filmed a race between two other TikTok stars: the athlete Zion Clark, who has no lower body and walks on his hands, and John Ferguson, who has a form of dwarfism? On TikTok, the race felt like a friendly contest, settling a matter of genuine curiosity, but the video soon appeared elsewhere on the web, shorn of the comradely atmosphere.
Clark has no qualms. He told me that he receives many positive messages as a result of his online presence—and that he doesn’t consider himself disabled. “I was born with this condition,” he said. “I do not look at it as a disability, as I have been able to do a lot of things that might astonish or surprise people but are relatively normal to me.” Activists talk about the “social model of disability,” which suggests that people are disabled not by their conditions but by the way society is structured: the bathroom stall that’s too narrow for a wheelchair, or the employer who refuses to consider anyone with a speech impediment for a customer-service job. Although Clark has no legs, his arms are ripped. He is now a freestyle wrestler, and could beat almost anyone reading this in a pull-up contest. So who’s really less able?
Being open about your difference offers a kind of relief, Atkinson says: If people are going to stare, why pretend otherwise? As a girl, she would frequently encounter children who asked questions—“which is what we want,” she told me—while their parents told them not to look, which made her feel alienated. Now when she meets a new colleague, Atkinson tends to offer them a high five, just to get the conversation out of the way. Likewise, Zara Beth says that talking openly about her Tourette’s syndrome has removed the sense of shame and stigma around it: “I’d rather get all the questions and be able to actually give them the right answers, than everyone be like, too touchy to ask anything.”
Inevitably, though, talking about your life online has an unpleasant side. Cooney is regularly called a “retard” and “spastic,” and while TikTok sometimes removes his videos because of his swearing, the moderation of insulting comments directed against him is patchy. How TikTok’s developers feel about the disability influencers flourishing on their platform is an open question. Internal documents that The Intercept obtained from the company’s Chinese developer, ByteDance, revealed that it has previously directed its moderators to limit the reach of videos made by users with “abnormal body shape” or “ugly facial looks,” alongside those with poor-quality housing and those who criticize the Chinese state. The guidance seemed to suggest that disability, like poverty, would repel potential users and advertisers. (A TikTok spokesperson told the reporters that the guidelines “represented an early blunt attempt at preventing bullying, but are no longer in place, and were already out of use when The Intercept obtained them.”)
And although many traditional disability-rights activists are glad that TikTok provides opportunities for greater understanding, they also have concerns. “The flip side is that as well as having a positive global reach,” Disability Rights UK’s Morell said, “social media can also bring out the gaslighters and trolls, who dismiss Disability activists and influencers as fake.”
In fact, some fakers do exist. Turning disability into something that attracts millions of followers has produced one unexpected consequence: the emergence of grifters soliciting money from their audience, or even just attention and sympathy. Earlier this year, I wrote about white academics who pretended to be Black or Hispanic—identities that bring discrimination in the wider world but, within some university departments, convey cachet and a presumption of authenticity. A similar dynamic exists on TikTok. Although you can’t pretend to have symbrachydactyly, Tourette’s syndrome is much more open to imitation by those who want the attention given to Cooney, Zara Beth, and others such as @witchwithtics (who has 1.4 million followers) and @uncletics (2.7 million followers). Cooney says that it is “easy for us that have got [Tourette’s] to tell” who is faking, and “those accounts aren’t around for long, because someone in their family, or their friends, will see it.”
What fakery means in the context of social media is not clear-cut, however, because tic disorders may also be susceptible to “social contagion.” In March, a letter to the British Medical Journal from doctors at Great Ormond Street Hospital in London warned of a spike in tic disorders among teenage girls at the end of 2020, and noted that many in this age group were keen consumers of Tourette’s content on TikTok. “Some teenage girls report increased consumption of such videos prior to symptom onset, while others have posted videos and information about their movements and sounds on social media sites,” the researchers wrote. “They report that they gain peer support, recognition and a sense of belonging from this exposure. This attention and support may be inadvertently reinforcing and maintaining symptoms.” A response to the Great Ormond Street doctors drew parallels with the “dancing mania” of medieval Europe.
Virality distorts everything, amplifying both the good and bad. TikTok’s disability influencers must negotiate having their videos remixed and stripped of context by outsiders with bad intentions, and fend off the drive-by cruelty of the internet. They have to draw their own boundary between exploitation and empowerment. And they must reckon with the unintended consequences of higher visibility. Nonetheless, all the influencers I spoke with see demystifying their condition as a big reason to be on TikTok. They want difference to be accepted as a part of life, rather than a reason for fear or revulsion. Cooney, Atkinson, and the rest have used social media to take control of their own stories. Instead of being the internet’s punch line, the disability influencers are now the ones making the jokes.