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Touretteshero’s Jess Thom: ‘Disabled people need to be written in, not written out’

Jess Thom. Photo: James Lyndsay

Jess Thom’s Backstage in Biscuit Land, a witty celebration of her experience of living with Tourette’s, was an Edinburgh Fringe hit in 2014. Since then, she’s become a figurehead of inclusive theatre and is now taking on Beckett. She tells Natasha Tripney why theatre used to scare her and how that experience has driven her on

Mouth in Samuel Beckett’s Not I is one of the most distinctive – and to many performers – daunting characters in theatre. A mouth, illuminated by a spotlight, sits 8ft above the stage, spewing forth words at a ferocious pace.

When Jess Thom first read Beckett’s text she found it incredibly resonant. “I recognised that this character was a neurodiverse character, a disabled character, and should absolutely be played by someone with that shared lived experience.”

Thom has Tourette’s, a neurological condition that causes verbal and motor tics. Her most frequent verbal tic is the word “biscuit” – she can tic “biscuit” hundreds of times an hour – but other common tics include “hedgehog” and “cats” along with the occasional “fuck” (Thom is one of the small minority of people with Tourette’s who tic obscenities).

Thom performs as Touretteshero at the Southbank Centre in 2014.. Photo: Rachel Cherry
Thom performs as Touretteshero at the Southbank Centre in 2014. Photo: Rachel Cherry

Her motor tics include repeatedly hitting her hand against her chest. She uses a wheelchair to make getting around easier. For the purposes of the interview, the numerous “biscuits” and “hedgehogs” that punctuate her speech aren’t included, but they are part of the texture of our conversation – like “ums” or “likes” – only infinitely richer.

In 2010, Thom co-founded Touretteshero with her friend Matthew Pountney. It is an organisation with a mission to educate and inform people about Tourette’s. They set out to challenge some of the commonly held assumptions about the condition and campaign for inclusivity, while also celebrating the inherent creativity of Tourette’s – Pountney once described it as a “crazy language-generating machine”.

It was Pountney who first introduced Thom to Not I, “at a time when my tics were changing and I was finding it hard to recognise my own voice”, she says. But it was only later, during one of many conversations Thom was having with venues about ways of improving access, that she started to consider the idea of performing the piece herself.

One of the things venues often told her was of their interest in programming more relaxed performances but that they hadn’t found “the right type of show”. Thom says: “There is this view that serious work, quiet work, isn’t suitable for a relaxed performance and I became interested in challenging that.”

It was during one of these meetings that the subject of Not I came up, but someone said the Beckett estate would never give her permission to perform the piece. “Matthew and I immediately said: ‘So what about Not I, then?’ ”

Performer unbound

As it turned out, the Beckett estate did grant permission. But there remained many practical things to consider when it came to performing the play. The piece is often considered something of an ordeal for an actor. Past performers, including Jessica Tandy and Billie Whitelaw, have been strapped to platforms and placed in wheeled boxes to keep them still and fix their mouths in position to be caught by the light.

“I wanted to give a vigorous presentation of that play in a way that works for my body,” says Thom. “Strapping me in and holding me down wasn’t going to work.”

Restriction is the antithesis of Thom’s work as an artist. Everything she does is permeated with ideas about access, comfort and care. She and Pountney went back to Beckett’s stage directions and found solutions that worked for them, including a specially constructed platform that allowed Thom and her wheelchair to be elevated to the specified height above the stage. She is neurologically incapable of keeping still, so a bespoke, wearable light was made for her.

“Disabled people and non-disabled people can achieve the same things but it doesn’t always look the same,” she says. “For me, inclusivity is about understanding that people do things differently. That had to be present in the making of the piece. It needed to be accessible to people who might not otherwise have felt able to access it.”

Not I review at Pleasance Courtyard, Edinburgh – ‘cathartic, inclusive and political’

She first performed it at last year’s Edinburgh Fringe, where one of the larger spaces at the Pleasance Courtyard was repurposed for the show. The audience had the option to sit on cushions on the floor, lie down or move around. At Battersea Arts Centre, where Not I is being performed in London, a whole floor will be filled with foam.

“We wanted the audience to be in control of where they sat and how they watched it,” says Thom. “We wanted to show our audience care. We wanted to create an intense theatrical experience. We didn’t want to reduce that intensity but we also didn’t want to put people’s physical comfort at risk.” People who tic, shout or move about can do so without anxiety about disrupting the show. British Sign Language interpretation is also an integral part of the piece. Thom is also thinking about making it baby-friendly.

Tics respond to environmental triggers so the act of learning the text presented challenges in itself. She started learning the play while touring an earlier show and had to stop for a while because Beckett’s text was emerging from her in tic form. “Some of that language – like ‘sudden flash’ – is so much like tics that it was instantly being absorbed by my brain and coming out again. Putting that monologue through my body is like putting a stone into water,” she explains. The text displaces her verbal tics, while her motor tics increase.

Performance of Not I at Battersea Arts Centre, London. Photo: James Lyndsay
Performance of Not I at Battersea Arts Centre, London. Photo: James Lyndsay

There are periods in Not I when Mouth is silent, and Thom discovered on the first run-through that during these pauses her tics would suddenly erupt. “Every ‘biscuit’ pistoned out with such force. I hadn’t expected that, but it’s not a problem – it’s my version of silence.”

The road to Biscuit Land

Thom always considered herself a creative person. She studied visual art at Camberwell College of Arts. She speaks eloquently about the importance and power of play, having worked for some years at an adventure playground in south London. She says the capital “is unique as a city in having these amazing outdoor play environments that are child-led and have a history in junk play and free play.”

It was while working at the playground that Thom met Pountney. They became friends and started working together to put on events for disabled children. “We didn’t necessarily understand them in the context of performance, but now I can see the similarities. If you can hold a circle time for 60 disabled children… there is a strong performative element to that.”

In the past, Thom has had experiences at the theatre that she’d found “very upsetting”. On one occasion she attended a performance and, despite informing the venue of her access needs in advance, had been asked to sit in isolation in the sound booth to avoid disturbing other audience members. She found this distressing and humiliating and came to feel the theatre was not a space for her.

But then she began to perform at festivals as Touretteshero, alongside bipolar songwriter Captain Hotknives, who takes ideas from Thom’s tics and “weaves them into stories”. She began to see other shows, including Francesca Martinez’s What the Fuck Is Normal? and Kate Tempest’s Brand New Ancients, and slowly she started to “feel excited by theatre again instead of scared of it”.

In 2013, Pountney had taken a show to the Edinburgh Fringe. While he was there he saw several shows by disabled theatre-makers, including Robert Softley Gale’s If These Spasms Could Speak. He came back convinced they should take their own show up – and in 2014, this was exactly what they did.

Thom is clearly not someone to shy away from a challenge. “When we commit to doing something, we do it wholeheartedly,” she says, which seems like something of an understatement.

Backstage in Biscuit Land review at Barbican Pit – ‘a celebratory show’

This show was Backstage in Biscuit Land, which explored Thom’s experience of living with Tourette’s in a way that capitalised on the spontaneity and creativity that comes with having the condition.

With a small research and development grant from Unlimited, the arts commissioning programme designed to help enable new work by disabled artists, Thom and performer Jess Mabel Jones started to devise a show drawing on the material in Thom’s blog and from her book, Welcome to Biscuit Land.

“I had no idea what the norm was of making a show for Edinburgh, so we made it in a way that worked for us,” says Thom. “We knew no two shows would be the same and I would not be able to stick to the script. We played with that and the creative space that my tics give me access to.”

The response to Backstage in Biscuit Land was incredibly positive. The reviews were good and other theatremakers, energised by Thom’s plea for access and inclusion, started inviting her along to their shows. “I saw more theatre in my first time [at the Edinburgh Fringe] than I’d seen in my life.”

The show became a springboard for discussions about relaxed performance, a tour followed in 2015 and it was reworked as Broadcast from Biscuit Land and shown on BBC4 as part of Battersea Arts Centre’s Live from Television Centre project. The success of Biscuit Land was such that it changed the focus of Thom’s work. Until this point she had been working full-time at the playground and working on Touretteshero on the side. But after Biscuit Land she was able to devote herself to the project full-time.

Last year, Thom hosted Brewing in the Basement, a creative takeover of London’s Barbican Centre. There is something amusingly upside-down, she says, about playing Beckett at Battersea Arts Centre and hosting an arts party at the Barbican. “It felt deliciously naughty to be parading through the Barbican foyer with a brass band.”

We speak at her flat in Peckham, known to readers of her blog as “the Castle”, the day after she hosted Heroes of the Imagination at London’s Southbank Centre, a weekend of superhero-themed activities for children.

Jess Thom and Jess Mabel Jones in Backstage in Biscuit Land. Photo: James Lyndsay

Touretteshero still has “a shelf of ideas we haven’t had the opportunity to realise,” says Thom. Making work with a focus on children and young people is clearly a passion and she’s interested in creatively using different types of space. To this end, she’s performed a version of Backstage in Biscuit Land at Tate Modern, made for a younger audience. With its ditties about ursine fornication, the show was not initially intended for children, but after a group of 11 year-olds turned up unannounced at one performance, they decide to tweak the show for a younger audience.

“Children have imagination, courage, curiosity and openness in abundance,” she says. “I’ve worked with children for 20 years and their capacity to think inclusively is something lots of adults can learn from.”

Occupying space and removing barriers

“Theatres, museums and galleries,” she says, “are spaces where we can create different visions of our future and different ways of communicating with one another.” A word Thom uses a lot is “occupation”. The way in which people use space is political, she explains – by bringing children and adults, disabled and non-disabled artists and audiences together in certain spaces, you can begin to create bottom-up change.

“Occupying space has become part of the way that we work,” says Thom. “You shouldn’t have to make a show to be able to go inside a theatre. I want children and young people to feel at home in those creative spaces and to feel that they can become artists because that’s how we will have a more dynamic and rich society. Different kinds of bodies and minds need to be visible and given equal importance – that’s the sort of artistic community I want to be part of.”

Thom believes that true inclusivity is not something that can be achieved easily or quickly, but requires systemic change – and this requires care, compassion and a willingness to continue thinking and talking about the subject.

She’s a firm believer in the social model of disability – the idea that what makes someone disabled is not their medical condition, but the attitudes and structures of society. “It informs a lot of who I am and how I think about my body,” Thom explains. “Disabling barriers that we create as a society exclude a lot of people.”

Jess Thom: The fringe still has some way to go before it is truly open access

By thinking about difference and about people’s needs, not as an afterthought but by putting it at the heart of a process, it is possible to “create less disabling spaces for people and less disabling attitudes”, she says. Particularly in the arts sector, she adds, accessibility can be viewed as a box to tick, merely a matter of becoming compliant, but this is not good enough. “Thinking inclusively is a process that you have to engage with in everything you do, otherwise those systemic barriers will start repeating themselves.”

“Disabled people have been particularly hard hit by austerity,” she continues, “and there is a generation of young disabled people who are seeing barriers increase. How can we expect to have a new generation of disabled performers and musicians when lots of children aren’t able to leave their homes?”

“Being a disabled person is a political act,” Thom says firmly. “My life is precarious. It’s reliant on the decisions of people who’ve never met me.”

Though she is confident and articulate about her condition and her needs, “when someone talks to me about my ‘package of support’ I still have that feeling of burden. We need to protect people from the language of oppression and austerity, from having the spirit squeezed out of them. We have to create positive change. We have to resist.”


Jess Thom’s top tips for aspiring theatremakers

• If you’re disabled or neurodiverse, there can be a pressure to push down certain parts of who you are in order to conform. I used to think that going to the theatre involved trying to force myself to be as still and quiet as I can, and that was painful and had a huge impact on me emotionally and physically.

• Our lived experiences as disabled performers should be present in how we take on roles and make work. We shouldn’t be afraid of difference. We should be confident in how we lay claim to spaces. If we don’t make difference visible, it’s damaging to ourselves and the generations that follow us.

Not I, but us

Returning to the topic of access in the arts, she says it’s not just about making sure everyone can see work, but the work disabled artists are given space to perform and the roles in which they are cast. “We don’t need to wait for disabled characters to be written, they already exist within the canon,” she says. Mouth is just one example of this. “Disabled performers have a lot to give to existing work, and not just to new work that revolves around disabled characters.”

Tourette’s, she explains, is “a non-stop experience”. The character of Mouth in Not I is one of the best expressions Thom has come across of that experience. “Mouth is going at the beginning and she’s going at the end. That image appealed to me years ago when I knew nothing about theatre and it still appeals to me now.”

At the end of the show, she asks the audience to raise their voices, to relinquish control, to make noise. This gesture is central to the politics of the piece, though they initially spent a lot of time discussing ways of making the audience feel safe to do this. Eventually Thom realised that “I’m not asking an audience to do anything I don’t do every day whenever I’m in a public space because of the way my brain and body work. By asking an audience to shout, that’s significant: it’s an act of solidarity with Mouth and with me.”

She adds: “People often say Not I is about isolation and exclusion – and it is, particularly in the scene where Mouth goes shopping. But that moment shows me that someone is doing her shopping for her. It was a demonstration of support.”

This image of support is “really relevant to the moment we’re living in,” she says. “Mouth is only as isolated as the community she’s living in makes her and disabled people are only as isolated as their communities make them. Lots of hard-won equalities are being dismantled and the arts sector has a responsibility to make sure that people are being written in and not written out.”

CV: Jess Thom

Born: 1980, London
Training: No formal training – “Adventure playgrounds were where I trained.”
Landmark productions: Backstage in Biscuit Land (2014), Not I (2016)
Awards: Total Theatre award for Backstage in Biscuit Land (2014)
Agent: Lucy Fairney at PBJ Management

Not I is at Battersea Arts Centre, London, from February 28-March 17

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