A new kind of Beckett

Photograph: James Lyndsay

Not I, as a play, has been a reference for me and for Touretteshero as an organisation for years. I'd never read or seen any Beckett before, but I was instantly drawn to it, intrigued by it, confused by it.

I was introduced to Not I at a time when my tics, the involuntary noises and movements that I make, were increasing and having a bigger impact on my life, and I was struggling to recognise and accept them as part of my body. This is a play that, at its essence, is about someone's struggle to recognise their own voice, and that was obviously very relevant to me at that time.

In 2014, I created Backstage in Biscuitland, which was very much a joyful show, a comedy about my life with Tourette's and the fact that I say "biscuit" a lot, but also about difficult experiences I've had with accessing the theatre. In that show, we promote the idea of relaxed performances and the idea that making work inclusive makes it better art. We took that show to Edinburgh in 2014, and we then toured across the UK and across the world.

One of the conversations we would have with venues was they would say, 'we're really interested in relaxed performance and making our work accessible to disabled people, but we haven't had the right type of show'. So we became fascinated by this kind of cultural curation that happens about what work is and isn't made accessible to disabled people – what's considered 'suitable'.

"Disability shouldn't be a barrier to experiencing a wide range of theatre"

When we were thinking about what show we wanted to do next, we wanted to take a very intense piece of theatre and make it accessible to disabled people at every level, from audience to performer and to demonstrate how challenging texts could be opened up to diverse people. And that disability shouldn't be a barrier to experiencing a wide range of theatre and live performance.

It's particularly important with Not I because we've identified the character, Mouth, as a disabled character – we're claiming that character as disabled and understanding her experiences from that perspective. There's so much within the text that resonates with my lived experience. I want to open that up to lots of different people with different impairments. I think there's stuff in there that speaks to what it means to be a disabled person, not just historically but also now.

The Beckett Estate has been really supportive of this project, and are genuinely keen to make Beckett's work accessible to different audiences. They've recognised the need to make some reasonable adjustments – there's an understanding that the text will include some involuntary noises. But it feels really essential that Mouth, as a character whose brain works differently, is performed by a neurodiverse performer, and it feels really exciting to be able to do that.

The Edinburgh Showcase is a really great opportunity to highlight the work we're doing, particularly around access and embedding access within the show. Every single show has sign language integration, and we are embedding audio description within the piece. We're looking at access requirements as creative tools rather than add-ons. So to have that present in the Showcase is really exciting to me.

Also, having had the chance to tour internationally and meet lots of disabled artists from around the world, there's loads of opportunities to connect and share practice around disabled-led work, and what it means to be a disabled artist. Opportunities to open up these conversations internationally is fantastic.

"Mouth is disabled by the structures and systems around her"

I think disability arts scenes are often quite localised, and I think that for social justice and rights, that needs to be global. The arts are a really powerful way of getting people to connect with new ideas – to think differently.

What I've taken away from this is that Mouth needs only to be as isolated as her community makes her. I think that says a lot about the world we're living in now. I understand myself as a disabled person using the social model of disability. That's a way of thinking about disability that is different from medical or charity models, it says that I am not disabled by my body, by Tourette's Syndrome or by the impairment that I have. The thing that is disabling is the attitudes, environments and systems around me that don't consider difference in how they're set up.

I'm really interested in talking about that and how it relates to Mouth's experience in the story of Not I. If we understand that Mouth isn't disabled by her doing things differently, but rather by the structures and systems around her, what does that mean for that character? It's an opportunity to talk about that, and to think about what it means to be isolated.

It's often understood to be a text about isolation, but there's moments in it where I would perhaps challenge that. There's a beautiful moment where Mouth talks about going shopping, handing over a list and a shopping bag, waiting any length of time for it to be given back to her, and then paying and leaving without saying a word.

"Doing things differently doesn't mean that expectations are reduced"

People point at that and the fact that she doesn't communicate with anybody as showing her isolation. For me, I see somebody who's got a system that works for her. It's not the same as your system, but she's getting what she needs from it. Thinking about that idea more broadly is important.

We're interested in doing a rigorous performance of Not I, but in a way that works for my body. That means that we've reimagined some of the stage directions. And I like that it speaks more broadly to my journey as a disabled person; you can achieve brilliant things but it might not look the same for every type of body and mind. Doing things differently doesn't mean that expectations are reduced.

We want to create a space where people can come and take creative risks and see a piece of work they might or might not like, but they are not taking a risk with their identity or with the fundamentals of who they are. I have experienced this. I often feel like I am taking a personal risk going to see some pieces of work, and I don't think live performance should ever be about taking a personal risk with your identity.

Take creative risks, maybe see something you don't like, but you shouldn't be compromised. You should have permission to be yourself in that space. Hopefully we're creating something that models this, taking on a challenging piece of theatre in a way that works for lots of different types of people, where everyone has total permission and freedom to be themselves, exactly as they are.

"It's about not waiting for great parts to be written for disabled artists"

It's about not waiting for great parts to be written for disabled artists. We're going to go and find them, we're going to go and claim them. Reading Not I, it's very evident to me that Mouth is a neurodiverse character, and she should definitely be played by someone neurodiverse.

I'm also really interested in the idea of whether I'm at a neurological advantage with automatic text like Not I, because I have experience with automatic speech. In a play where doing it very quickly and with urgency is essential, I feel like my brain perhaps has a head start!

Putting that monologue through my body does really interesting things in terms of how it displaces some of my tics. I move around more and they become more physical, and my vocal tics reduce. But then there are these pauses within the text, and in those pauses it's like every "biscuit" that would have been there comes out.

I describe that monologue as like dropping a stone into water – the stone displaces the water but the water has to go somewhere. But I didn't know that would happen until we started performing it. We've come to understand that this is my version of silence as a performer  – and that doesn't have to look the same for everybody. 'Nothing' isn't silent or still for me, but it's not less intense or less valid.

Jess Thom, Co-founder of Touretteshero, was talking to Eleanor Turney, a freelance journalist, editor and arts consultant, and Co-Director of Incoming Festival.

Not I by Samuel Beckett, a Touretteshero and Battersea Arts Centre Co-Production, is at Pleasance Courtyard (The Grand) from 22–26 August.

Every performance of Not I at the Edinburgh Fringe as part of the British Council's Edinburgh Showcase will be a relaxed performance, with audiences free to move around the space or express themselves in any way they need to. The venue is accessible and every performance will include British Sign Language interpretation and integrated audio description.

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