---
title: "The truth about Tourette’s"
date: "2026-06-11T06:22:00+01:00"
modified: "2026-06-11T11:30:08+01:00"
url: "https://newhumanist.org.uk/articles/the-truth-about-tourettes/"
post_id: 10530
---

# The truth about Tourette’s

![](https://newhumanist.org.uk/wp-content/uploads/sites/2/2026/05/Jess-Thom-Publicity-Shots-2025-006-Ro-Murphy-cropped-1024x819.avif)Jess Thom, activist, performer and co-founder of multidisciplinary arts organisation Touretteshero. Credit: Ro MurphyTourette syndrome hit the headlines this year following the success of *I Swear*, a film following the life story of activist John Davidson. The film picked up two trophies at the Baftas in February, but there was controversy after Davidson’s tics caused him to shout out a racial slur during the awards ceremony, which was then broadcast by the BBC. It sparked debate over how the situation should have been handled and highlighted widespread misunderstanding of Tourette’s and those affected by it.

We spoke to activist, performer and theatre-maker Jess Thom, to hear about her perspective on the Baftas fallout and her experiences with Tourette’s.

**What is Tourette’s syndrome?**

Tourette’s is a neurological condition. It usually first presents in early childhood. If you look up definitions, they often say it’s characterised by involuntary movements and noises called “tics”. But those descriptions are quite dry and don’t necessarily convey the complexity and surrealness of the condition, the layers on which it works.

A few years ago, my sister found a description in the *Oxford Handbook of Clinical Medicine*: “Irrepressible, explosive, occasionally obscene verbal ejaculations and gestures. There may be a witty, innovatory, phantasmagoric picture, with mimicry, antics, playfulness, extravagance, impudence, audacity, dramatisations, surreal associations and uninhibited effect.”

When I read that it felt like such a relief, because it was like, “Oh, this is the sort of Tourette’s I recognise.” It’s totally involuntary, but its expression also has the imprint of where I was born and grew up … it has the imprint of me in it.

**You’re co-artistic director of Touretteshero (also your superhero name!), which was set up to explore and celebrate that creativity and humour.**

That’s right. As someone living with Tourette’s, there was formal support through charitable organisations, and medical support, but there wasn’t really anything that reflected my day-to-day experiences – the complexity, the emotional impact, the physical impact, the funniness and creativity. So I co-founded Touretteshero in 2010 with my friend and colleague Matthew Pountney.

We’d worked together for a long time, and as my tics started having a bigger impact on my life, I was finding it really hard to adjust. We had one conversation where Matthew described Tourette’s as a sort of “language generating machine” and told me not doing something creative with it would be wasteful. That sort of took root – understanding that while tics were involuntary, and there were lots of difficult things about them, it’s also interesting to recognise them as creative springboards and take that as a starting point for how we use creativity and humour to create change and a more accessible and socially just world.

**What does Touretteshero do?**

There’s the artwork that we make and support; there’s our solidarity work, our work with other disabled, neurodivergent and chronically ill people; and then there’s our research work, around disabled-led knowledge and the creation of knowledge, and who gets to contribute to that.

Our most recent \[big event\] was *Return of the Rebels* at Whitechapel Gallery in London, which was \[a free, multi-sensory event\] celebrating disabled-led play and turning that into an archive of how we play, and then commissioning disabled artists to respond and make new activities and experiences, and celebrating that through a day of play together.

We also make stage shows and immersive performances. Last year we created a piece of work called *Valley of the Shadows*, that brought different disabled creatives together to make a site-specific piece of work in Germany that thought about light and shade. And it wasn’t just saying light was good and shadow was bad, it was understanding that shadows can be our teachers.

![](https://newhumanist.org.uk/wp-content/uploads/sites/2/2026/05/3E52E3Y-1024x683.avif)Robert Aramayo and Maxine Peake in *I Swear*. Credit: BFA/StudioCanal/Alamy Stock Photo**There’s a lot of light and shade in *I Swear*. It shows Davidson’s difficulties with family life, at school, with the police, but it has a lot of hope and warmth, too.**

John’s work and advocacy is amazing. His documentaries \[the first about his experiences, *John’s Not Mad*, came out in 1989\] and the openness with which he shared his life, from being a teenager – I have directly benefited from it, and I’ve seen the benefit to other people in our community. *I Swear* is a very authentic telling of John’s story, and it’s helping people connect with the reality of living with Tourette’s. There are many, many challenges, often created by systems and environments and attitudes that aren’t built \[to accommodate\] our bodies and minds.

Personally, as a disabled performer and creative, I would have loved to have seen the lead role in *I Swear* taken by a performer with lived experience – there are incredible performers with Tourette’s who don’t get the opportunities that they deserve. The performance \[Robert Aramayo won a Bafta for best lead actor\] was very strong, but it still felt like a missed opportunity to me. That said, the messaging of the film was really positive. What came through really strongly was the difference that understanding and support and community make, and the role John has had in facilitating that for other people.

**The film ends on a positive note, with John getting the MBE from the Queen (and shouting the tic “Fuck the Queen!”). And also it showed him testing the Neupulse technology.**

I had some concerns about the inclusion of Neupulse \[a wearable device that delivers electrical pulses, designed to reduce the frequency of tics\], because that could be misunderstood by people as a cure. For me, the messaging around community and understanding was powerful enough on its own. I totally get that \[mental relief and diminishing tics\] was John’s experience of the technology. But what I wouldn’t want is for anyone to think that the only way to lead a happy and full life is if your tics diminish, because that isn’t going to be possible for many of us.

**Davidson was at the Baftas and shouted a tic, which was the N-word. You’ve criticised how this was handled.**

I think it showed a huge lack of care in all directions – for Michael B. Jordan and Delroy Lindo \[who were on stage at the time\] and for John and for the other people who were impacted. The BBC and the Baftas had a duty of care that was not upheld. With an international event like the Baftas, \[it’s about\] thinking about how you prepare and share information in a really busy schedule … and \[the tics\] absolutely shouldn’t have been broadcast.

Many people with Tourette’s will deeply understand that the pain and harm \[caused by tics\] is 100 per cent real, even if we didn’t choose to say it or it wasn’t intended. I really hope that, rather than think about restricting who gets to go to those awards in future, people will think about making inclusion a reality through practical actions.

**The “Saturday Night Live” show afterwards was also criticised as harmful, as it riffed off the idea that “I have Tourette’s” could be used as an excuse to say whatever you want. As if tics were repressed thoughts, spoken out loud.**

It’s a really simplistic understanding of Tourette’s to say that you’re automatically saying what’s on your mind. The language that I choose to use is “oppositional tics”, which involve doing the exact opposite of what you would want to or should do in any situation. Lots of people with Tourette’s have those oppositional impulses, and it’s so quick and automatic.

Often people think something can only be involuntary if it’s random, and they feel targeted \[when it’s not\]. Some tics are random, but when I tell someone involuntarily what I’ve got for their birthday, or when I told an audience of 200 people in Australia that my sister was pregnant before she told my mum, that was oppositional tics.

And that’s not just vocal tics. That’s not just racial slurs or shouting “bomb” in airports. It can also affect motor tics. That’s the reason that, as a young teenager, I would run at closed doors. It’s the same reason that, if something is sharp or hard or hot, then I will reach out and touch it involuntarily.

It’s physically dangerous and it’s emotionally dangerous and harmful – not just for people with the tic, but also for people around us. And understanding how we acknowledge and manage that harm is a constant part of life with those oppositional impulses. It’s a part of Tourette’s that is really hard for people to articulate.

I’m concerned that the media cycle \[following the Baftas\] reinforced ideas that a lot of work has been done to try and undo, and it can feel exhausting. I doubt there is a person with Tourette’s who hasn’t weighed up – whether they are seven or 70 – that balance of your right to contribute to the world and leave your home, with other people’s rights. That idea that you should somehow hide yourself for other people’s benefit. We need to have conversations with nuance and care, so that marginalised communities are not pitted against each other.

**How does this relate to disability support?**

At the moment in the UK, support for disabled people is being eroded across the board in really deep and insidious ways. Politicians are talking about supporting disabled people to work, but Access to Work has existed as a scheme since 1996. It’s vital, but it has been neglected, under-invested in and misunderstood. And it’s not transparent. I’ve had the same support, really, for 15 years. When that was reviewed last year, nothing about my impairments, my body, my job had changed, and the Department for Work and Pensions said nothing about Access to Work had changed. But it had. I had to stop work for three months because my support was cut by 60 per cent. \[It was subsequently reinstated after a campaign\].

We risk losing something that’s really progressive and precious, and we will all be poorer as a result. We live in a world that is shaped for a normative body and mind – that doesn’t exist – and we have a collective responsibility to try and reshape society so that it better reflects all of our humanity and lived realities. There’s this idea that disability is somehow a niche issue, but disability is something that will touch many people’s lives.

**I’ve edited out your tics, at your request, and some of the most frequent have been “biscuit”, “hedgehog” and “fuck”. Can I finish by asking you what are your favourite tics?**

My tics often surprise or intrigue me. At the moment, I’m saying “I fucked a cow in a hopeless place” to the tune of Rihanna’s “I found love in a hopeless place.” Which is very, very frequent, and I’m finding that both a mixture of, like, funny and frustrating.

*“I Swear” is available to stream on Netflix. Go to touretteshero.com for upcoming shows and events.*