Jess Thom performing in the anarchic BBC4 takeover Live From Television Centre, in November last year.

UK artist Jess Thom and US artist Gardiner Comfort have both made theater pieces about their personal experiences with Tourette’s Syndrome (Backstage in Biscuit Land and The Elephant in Every Room I Enter, respectively). This is an edited dialogue of our conversation about disability and theater, on-stage and off in the United States and the United Kingdom.

PART 1: REPRESENTATION IN THEATER

NICOLE SERRATORE: I saw both of your shows in 2015 and they made me think about my experiences with disability and theater and how little dialogue I had seen around these issues.

The biggest conversation we are having right now in America with respect to disability and theater relates to the Deaf West production of Spring Awakening which closed this week on Broadway. With a mixed deaf and hearing cast this production brought to light a lot of issues about disability and representation in theater. The production cast the first actor in a wheelchair who has ever appeared on Broadway. As wonderful as that is, it’s also shocking that it has taken this long. But it speaks to the long absence of disabled performers from our major stage (and clearly it’s not just a Broadway issue).

There is a lot of talk in the US and UK about trying to increase diversity on stage but do you feel that disability is seen as part of the diversity conversation? Are we failing to be intersectional when it comes to disability?

JESS THOM: This is a tricky question to answer because I think it depends where the conversation is happening. The impression I get is that, in the wider context of diversity, key influential institutions, funding bodies and broadcasters are increasingly including disability within their thinking. But this isn’t necessarily reflected in broader national discussions around diversity. I think this stems in part from a lack of opportunities to talk and learn about different ways of thinking about disability.

As a society there are still lots of people who think about disability solely in negative terms. The medical model – ‘disabled people are broken and need to be fixed’ – and the charity model – ‘tragic and in need of help’ – are ways of conceptualizing disability that remain widespread even though the social model of disability – ‘people are disabled by a failure to consider difference’ – underpins our legislation and public services.

Most people in the UK would probably say that ‘multicultural diversity’ is positive and should be celebrated, and that the achievements of women should be recognised and celebrated. But I think for many the idea of celebrating disability culture would be new or even uncomfortable.

I think art, culture and humour have great potential to help shift thinking and create a deeper, more widespread understanding of disability and difference, but crucially only if this is led by disabled people. When it comes to diversity on stage in my view, having non-disabled people writing about disability or performing disabled roles doesn’t count.

GARDINER COMFORT: In regards to plays being produced with physically disabled performers, or plays written about physical, neurological, or learning disabilities, I think it’s part of a natural progression of theatre reacting to culture. As you say, Nicole, disability is entering the “diversity” category. We’re slowly seeing more people of color represented on stage (I emphasize slowly) and on television, and perhaps casting noticeably disabled people is just next in line.

NICOLE: How are artists with disabilities getting onstage where you are? Or are they?

JESS: Some disabled artists are getting on some stages, but there’s still a long way to go. 1 in 5 people in the UK identify as disabled but this is definitely not represented on screen or stage.

NICOLE: Which theater companies or artists or work would you give a shout out to? Who is doing this right?

JESS: Graeae Theatre Company is a disability-led theatre company that has been established for over 35 years. What really excites me about Graeae’s work is the creative way in which accessibility is embedded into every performance. They constantly explore, refine, and redefine how signing, audio description, sound, lighting and film can be used to enhance the theatrical experience. Graeae’s Artistic Director, Jenny Sealey, was one of the first people we shared our show with and her support and input helped shape it. Heart n Soul and Access All Areas are companies of learning-disabled artists making interesting and varied work in both music and theatre. Oneofus – Mat Fraser and Julie Atlas Muz are US-based artists, and it was at a performance of their amazing X-rated version of Beauty and the Beast in London in 2013 that I first met Jess Mabel Jones, one of the people I went on to create Backstage In Biscuit Land with. Mat and Julie make work that is fearless, and fun. Beauty and the Beast included the most stunning fruit and vegetable-based sex scene I’ve ever seen.

In terms of individual disabled artists, Liz Carr, Robert Softely Gayle, The Vacuum Cleaner, Francesca Martinez, Laurence Clark and Katherine Araniello are all making amazing work that’s had a big impact on me and my practice.

Arthur Hughes and Genevieve Barr perform ‘The Solid Life of Sugar Water’.

NICOLE: I walked into The Solid Life of Sugar Water by Graeae without knowing anything about the company. [Exeunt podcast interview with its writer Jack Thorne here]The experiences of the disabled characters were so integrated into the storytelling without it being about disabled identities exclusively. Disability was neither marginalized nor centralized in the show. It felt like a truly rare POV on stage. Are people making space for work and performance that goes beyond disability and identity like this?

JESS: In terms of mainstream media and performances no, I don’t think so. It is still unusual for disabled performers to be cast in roles that do directly relate to disability – The Curious Incident of the Dog In The Night Time and The Theory of Everything spring to mind. Disabled actors being given the opportunity to play parts where disability is only incidental feels relatively rare in the UK. There are of course exceptions to this – disabled actors Lisa Hammond and Liz Carr both play regular characters in high-profile BBC dramas where their storylines rarely relate directly to disability.

I think for this to change meaningfully disabled people also need to be better represented as writers, producers, directors, as well as in leadership roles.

NICOLE: What compelled you to make the work that you made?

JESS: Talking about and explaining Tourettes is something I do every day. It doesn’t always feel like a choice, more a tool for living. Developing the language and confidence to explain my tics and experiences to other people has had a more powerful impact than I ever imagined it could.

Often this is very functional, like explaining at the start of a phone call that I have Tourettes, answering a question or addressing sniggers on public transport. Having opportunities to explore and share my experience of Tourettes in creative ways feels really satisfying. There are also lots of fascinating elements of Tourettes, many of which most people won’t have considered, and having the space to explore these is creatively exciting.

Embracing the spontaneous creativity that my unusual neurology provides has been a gradual process. The roots of our show grew out of some difficult experiences I’d had accessing live performance because of my tics in. On one occasion I was asked to move out of the auditorium and into the sound booth to watch a show. This was deeply humiliating and although, at the time, I promised myself I’d never go to the theatre again, quite soon after it felt much more productive to create a show that made these barriers visible.

I’m particularly interested in how creativity can be used to reclaim cultural spaces that can be hard for disabled people to access. Recently this has mainly been through live performance, but our work extends to other art forms as well. For example, in 2014 we worked with Tate Galleries in London to devise and deliver We Forgot The Lot, a creative takeover of Tate Britain by 300 children and young people, some with and some without Tourettes. A traditional art gallery/museum is always perceived as a ‘quiet space’ with invisible barriers preventing people with Tourettes, and their families, from accessing them. The aim of this event was to challenge this preconception in a playful and practical way by working with Tate staff to create an event that offered a warm, supportive and exciting welcome to children and families.

Gardiner Comfort in performance. Photo: Jenny Anderson

GARDINER: I especially relate to Jess’s points about having to explain her tics to people in public and I think her point about the unexpected artistic benefits she’s gradually come to know is awesome.

I ended up with this show for basically the same reason that I started performing solo work: because I couldn’t get a job. When I came out of graduate school I didn’t get an agent, and couldn’t get any work for quite a while. I was incredibly worried, as actors often are, and I got sick of going on auditions for crappy plays or going to open Equity auditions for Off-Broadway shows I wasn’t going to be cast in. I had always been writing, even before I was an actor, and I had been writing monologues since high school. I grew up going to see solo performers like Danny Hoch, Sarah Jones, lots of others. Oddly enough, I never actually saw Eric Bogosian perform live (even though he knew my parents and I had every opportunity to see him), but I saw the film recording of his solo show Sex, Drugs, Rock ‘N Roll and it changed my life. So, after grad school when I was desperate to work, I started a monthly night of new work where artists could bring things they were working on to show to audiences. Basically a curated open mic. It was awesome and it forced me to write every month. So after a while I had enough monologues for a solo show. Eventually I did one that was a series of different monologues. But one piece was very different. It was a dance piece that came from my tics. It was the only overtly personal moment in the show and it stood out. Kel [Haney, director of The Elephant in Every Room I Enter] immediately decided that it was the kernel of another show about me.

We kept talking about it and ended up being picked for Mabou Mines’ Residency. We started rehearsing but didn’t know what we wanted to make. In the middle of the residency, which was in the Spring of ’14, I went to [Washington] D.C. to the Tourette Syndrome Association National Conference and it blew my mind. I had never been around that many people with Tourette’s and it really had an effect on me.
We came up with a show and went from there. Thankfully, with Kel’s producing acumen, and both of our commitment to shying away from needless sentimentality and using TS as a crutch, the show we’ve come up with is pretty unique and seems to affect people in powerful ways. It really feels like my brain on stage.

NICOLE: Has anything about your experience surprised you?

JESS: One of the things that surprised me in a really positive way was the enthusiasm amongst other performers, directors and producers for making their own work more accessible. In our show we talk about the growing movement within British theatre for Relaxed Performances, by which we mean performances that take a relaxed approach to noise or movement from the audience, offer a warm welcome to people who find it hard to follow the conventions of traditional theatre etiquette, and that encourage everyone to respond without inhibition. I’m really proud of the role that Backstage In Biscuit Land is having in promoting and broadening the discussion around relaxed performance.

GARDINER: I will say that, while I’m grateful to have control of the work, it’s been surprising how different telling this story is from the typical roles I play. In this show I’m not separated from the audience by a character. I’m playing myself and telling some very intimate stories and, for the first time, ticcing onstage has been a problem. Performing a full-length solo show is exhausting to begin with, but to be directly addressing the audience has added something new I’m still getting used to. It’s wonderful and exciting, but I’ve found myself ticcing for real, alongside the written tics and imitations of people at the conference. In creating the show, I’ve sort of had to catch up to the script as the actor and it’s a whole new ballgame.

PART 2: CRITICISM AND AUDIENCES

NICOLE: Have you encountered any issues in how your work has been read or reviewed? I’ve spoken with artists of color who often complain about certain coded language being used in reviews by white critics which limit the way in which their work is seen or talked about. There have been numerous examples of certain critics (especially in the UK) making sexist remarks about women’s appearances on stage. Have you seen similar issues in the way in which critics speak about disability?

JESS: This is a really interesting question and one to which I haven’t given a great deal of thought, so I went back and had a look at some of our reviews. Of the eight I looked at there was only one where the language ‘clanged’ for me a couple of times, with phrases like, “making a virtue of her own problems”.

This review and one other also used the word “inspiring”. Being inspiring obviously isn’t negative in itself. In fact one of the motivations for creating the show was to inspire change. But as a disabled person I’m often suspicious of this word because of how frequently it’s used in relation to disability as a coded way of saying ‘made me feel better about my own life.’ I’ve written about my strained relationship with inspiration here, and Crip activist Stella Young talks about it brilliantly in this TEDx Talk.

Reading back through the reviews I was encouraged by how well the show had been understood and read by many of the journalists and critics writing about it. I think I’d expected there to be more language that I found troublesome than there actually was.

Broadly speaking in the media in the UK there is a big issue with how disability and difference are discussed, and it’s an issue for both disabled and non-disabled people. There are definitely some bits of Backstage In Biscuit Land that resonate slightly differently with disabled and non-disabled audiences. For example there’s a scene where I eat a bowl strawberries, and because of my arm tics and erratic impulse-control I end up covered in them in a quite dramatic way. You can feel that non-disabled people in the audience often find this quite tense until we break that tension with humour. In contrast, disabled audience members are usually roaring with laughter from the moment the first strawberry makes contact with my face. It feels important to me that our show has something to say to both disabled and non-disabled people.

Deaf West perform Spring Awakening

NICOLE: One of the issues with Deaf West’s Spring Awakening was whether this was really a show for non-disabled audiences to experience deaf culture. I was glad The Guardian invited deaf audience members to attend to write about it from their perspective and discuss the parts of the show that worked for deaf audiences and the difficulty some deaf audience members had in understanding the storytelling during portions that involved simultaneous communication (ASL and English together).

Not that it takes away from the work Deaf West was doing but I’m buoyed by pushing the conversation out beyond just a hearing perspective in how to interpret and critique the work. These are the kind of conversations that I’d like to think help people see the work from a different perspective.

As Jess described We Forgot the Lot, it reminded me of an issue that was really prevalent in Gardiner’s show. He discusses the newly available support for younger people with Tourette’s and how events and services like that may not have been as available when he was younger. I had not thought about the generational divides that might exist and how isolating that might be.

GARDINER: I appreciate your mention of the generational stuff. It was profound noticing the advantages that younger people have. As slow as progress seems to be with TS, there has clearly been some made, especially with diagnosis and awareness. My dad has it but was never diagnosed so had to trudge through the difficulty of thinking he was stupid and working extra hard to get along. I had the good fortune to be diagnosed and to have the support of my family, teachers, and plenty of specialists, but I didn’t know anyone else with Tourette’s and had a lot of trouble with bullying and feeling different. And finally, the young people at the conference had each other and had this wonderful opportunity to feel normal. The pain and beauty of that is my ideal form of storytelling and fits perfectly in the show. The fact that you must accept the cards you’ve been dealt and make the best of it. But there’s also a sense of humor and pride that comes with growing up the way I did and I’m grateful for that as well.

JESS: I have occasionally heard adults with Tourettes talk negatively about the difference in the support that was available when they were growing up in comparison to what is available to young people with Tourettes now. I think it’s important to view this within the wider context of disability rights and support for disabled people. The American’s With Disabilities Act and The Disability Discrimination Act (now the Equality Act) here in the UK, are 25 and 20 years old respectively. Legal protection from discrimination for disabled people is still very recent. I think it’s important not to downplay the struggles of different generations or paint too rosy a picture of what is available now just because it was better than what was available when we were growing up. For me, the most successful Tourettes events I’ve been to have been intergenerational and have left me feeling part of a diverse community of people with lived experience of the condition.

NICOLE: Going back to your discussion of “relaxed” performances for a minute. In the US, at some shows and venues, we have special performances which are called “autism” performances. They are intended for children and adults with autism spectrum disorders and they adjust the performance of the shows to tone down loud noises and other aspects that might be triggering for audience members with sensory sensitivities. But after seeing Backstage in Biscuit Land and hearing about your traumatic experience of being moved to the sound booth the American terminology was more than a little disappointing. These performances are often targeted at children””which obviously is great when it comes to outreach and developing young audiences””but when I hear the term it makes me think of all the other people (adults and children) who are left out. It seems like such an unfortunate linguistic distinction to make. Am I being oversensitive? In doing research I did find one US theater moving to the UK terminology to be more inclusive.

GARDINER: Something that jumps out at me is the disruption at The King and I which the actor [Kelvin Moon Loh] wrote about on Facebook. If you’re not familiar with it, a young audience member was making loud outbursts during the show and his mother had to pull him out of his seat to leave as dozens of audience members shouted cruelly at them for the disruption. The actor on stage determined that the child had autism and wrote about it on Facebook, defending the child and his right to be at the theater, regardless of the noises he made.

Perhaps it’s because I’m so wrapped up in our show, but The King and I event seemed to come at a fitting moment. I’m not sure whether that’s because there is so much social injustice happening in our country right now and people want to confront it, or simply because disabilities, especially Autism, have gained more attention in recent years.

The idea is that the audience members who are usually shunned for their disruptions are invited to watch the performance however they need to, making whatever physical or vocal outburst they need to, without worrying that they’re bothering anyone. It’s a cool idea because not only is it kind to these audience members, it creates a whole new experience for everyone, the outbursts potentially heightening the theater experience in a good way.

JESS: I don’t think you’re being oversensitive at all. Language is really important, to guiding how we feel about things. An ‘Autism performance’ seems to offer an invitation to a very particular group, as someone without autism I wouldn’t feel this invitation was being made to me.

The other thing I noticed about ‘autism performances’, from the limited research I’ve done, is that they seem to be only for people with autism and their families, not inclusive of them as part of a wider audience. In fact, even the example you sent through of the US theatre using the language of ‘relaxed performance’ seems to be exclusively for people who have that as an access need. This has been an issue within some theatres here in the UK too.

My feeling is that segregated performances are not the answer. In my experience, relaxed performances work best when they are regular performances that embrace certain key principles. Why define or limit who will benefit from these or require people to declare their needs? If the invitation is open there are many people who might not feel able to access theatre who would benefit: people with babies, those with dementia, neurological conditions, learning difficulties, loud laughs! Here in the UK there’s also a growing number of people who enjoy relaxed performances without having any particular access need but like experiencing theatre in a relaxed and inclusive environment.

As this discussion takes place, relaxed performances are on the rise in London: following the first ever relaxed performance of the West End’s Charlie and the Chocolate Factory last month, Wicked has announced it will follow suit in May. For more of Jess Thom’s thoughts on the relative benefits of Extra Live and relaxed performances, visit her blog here.  And you can read more about Gardiner Comfort’s work on his website.