Tokenism, Tics, Trauma: I Have Tourettes & Here’s What I Want You To Know

When Monica Nguyen was a child, her GP diagnosed her with a cough. But it wasn’t a cough — since she was seven, she’d been living with Tourettes Syndrome. Her diagnosis was in fact a misdiagnosis, something that’s common in her community. 

Even medical professionals can fall into believing the misconceptions about Tourettes — that it’s all about swearing, that it’s a type of seizure, that it’s controllable… these myths are what we typically see in television and movies, perhaps because it’s easier to brush off Tourettes as a peculiar punchline condition, rather than the chronic nervous system disorder that it actually is. 

“It's a neurological condition which means it starts from the brain and nervous system. It's often mistaken [for] bad mental health, like someone's crazy," Nguyen tells Refinery29 over the phone. “Tourettes causes me to have vocal and physical tics, [and I'm] also [part of] the 10% with Copralalia, known as the swearing tics which [is what] Tourettes is mostly known by."

The young Vietnamese Sydneysider started sharing her experiences online at the end of 2021. On TikTok (@meowmons), she began by sharing her recorded interactions with strangers discriminating against her on public transport. 

“If you had Tourettes, you wouldn’t be able to argue and say you have Tourettes,” one woman fires at her at a train station. “Stand up and let all your swearing out like a brave one,” says another on a bus.

“[These incidents have left me] really upset and traumatised. All my like experiences put together have really grown my anxiety,” she shares.

Nguyen doesn’t want to be known as ‘Sydney Tourettes girl’ — a label that was thrown her way by a follower she bumped into in public who started filming her. “People are like, ‘oh, that Tourettes's girl’. [I have an] issue with how people put disability and people together. There's more to me. We're multifaceted. I’m not my disability,” she says.

With over 55,000 followers, Nguyen’s page isn’t just a place for documenting accounts of ableism, it’s a safe space for education and joy. Here, she shares what it’s like getting her hair cut, going rollerskating, getting her face painted and her photo taken. 

It’s these everyday moments that give viewers a peek into her life as a content creator, instead of the often limiting label of a disability advocate. She tells me that before she decided to make content around her Tourettes, she ran a food blog — and she loves pole dancing too.

While she’s keenly leaning into this digital space after a ‘fuck it’ moment with her therapist, it hasn’t been an easy ride in an ableist world, especially in her Asian community. Conversations around gender and disability are growing, but the intersection between gender, disability and race are fewer and far between in Australia. 

“I've definitely faced [racial] stigma and taboo, and still do today. I feel like disability pride is really new to a lot of cultures; I feel the talk surrounding it in Asian cultures is still very slow,” Nguyen shares. “It's really hard for me to explain it to Vietnamese people, as a lot of people don't know what it is. I've had it tough; I’ve had people always trying to cure me or call[ing] me possessed.”

Working in the disability field as a support worker has only solidified the lack of understanding afforded to Tourettes. “I feel like there’s understanding if someone says ‘my son's autistic’, people get it straight away. But if people say, ‘oh, it's Tourettes’s', it's not taken seriously,” she says, sharing that she’s always been one of the few people of colour in the room in disability support spaces.

Nguyen hopes that these conversations and TikTok coverage will transition to IRL allyship. “She has Tourettes, she has outbursts and it’s completely normal,” says one bus passenger that jumped to Nguyen’s defence, captured in a video. 

“Just don’t be a bystander… if you see something that's off, stand up, and if you can’t, at least ask the person after the situation deescalates if they're ok,” Nguyen urges, saying that the filmed incident above was the only time a stranger has ever stood up for her.

“People think ableism and discrimination [don’t] happen. [It] happens every day, whether it be through the language you use, or the casual attitude you hold. Attitudes to people with disability tend to be more disabling than the actual disability itself.”

In her own way — one that’s sprinkled with joyful GRWMs and mukbangs — Nguyen is destigmatising living with Tourettes. And she's determined to do it with cheek and a wolf cut.