Jess Thom is comedian and performer, perhaps best known for Touretteshero, an alter-ego and project aimed at creating greater awareness of Tourette syndrome – Thom having been diagnosed with the condition herself in her early twenties. Her show Backstage in Biscuit Land debuted at the Edinburgh Fringe in 2014 and won critical acclaim and went on to tour nationally and internationally.
To coincide with her performance at our Unlimited festival in September 2018, Jess Thom took some time out to explain six things everyone should know about disability.
There’s a common misconception that ‘disabled’ means ‘less able’. It doesn’t. To disable something means to prevent it from functioning. Loads of things get disabled: internet connections, alarm systems, hand dryers and sadly people too – but with the right approach this can be changed, and we can create a world where everyone can participate.
For a long time, the consensus was that we followed either the medical or charity model when thinking about disability. Both of these see a person as being disabled because their body or mind is impaired in some way, and are in need of pity or a cure. They focus on what’s wrong with the person and not on what the person needs.
By contrast, the social model says disability is caused by a failure to consider difference in the way society is organised. This way of thinking recognises that it’s normal for bodies and minds to work differently and for some people to have impairments and others not. Rather than locating disability with individuals the social model helps identify the physical, structural and attitudinal barriers that disable people. Only if these barriers are acknowledged can they can be changed.
Understanding disability using the social model has raised my confidence, and it’s been instrumental in defining how I’ve come to think about my body and my experiences. It’s the reason I say I’m a disabled person rather than a person with a disability. Disability isn’t something I drag around with me and it’s not a permanent, unchanging state. I’m more or less disabled in different contexts. The exciting thing about this is that by working together we can create less disabling spaces, systems and attitudes.
Permission to adjust my surroundings to meet my needs is both essential and transformative. When my tics first started to intensify, just being able to leave my flat safely suddenly seemed impossible. But as soon as I realised I could change my environment as and when necessary, life felt much more manageable.
I’ve commandeered foyers, rearranged office furniture, and on one occasion made use of a fire station floor thoughtfully covered with blankets. My increased confidence in adjusting surroundings has made the difference between being independent and included rather than isolated and restricted.
People sometimes feel unsure about whether they can say they’re disabled or whether particular conditions count. Disability isn’t a club and there isn’t a guest list for getting in. If you have lived-experience of barriers resulting from how your body or mind works you can choose to identify as disabled if you wish to.
For me, saying I’m a disabled person makes me feel strong. It means I can help with finding solutions, be part of a vibrant community of people with shared experiences, and feel and act in solidarity with others.
It’s easy to think about access as just being about the big stuff – the ramps, the British Sign Language interpreters or having information in Braille. Of course these adjustments have their place, but there are many smaller, low tech and low cost adjustments that can make a big difference too – the drinking straws ready for those who need them, information in easy read for those with learning disabilities, a chill out space for anyone wanting a break, or a touch tour on offer before a performance.
It’s time to redefine what art, theatre and exhibitions look and feel like, who curates them, who they’re for, and how they’re experienced. We have to stop defining our audiences so tightly that we exclude people in the process.
To create truly inclusive environments we have to be ready to adapt; whether that’s the physical environment, the sensory landscape, the way we communicate, or the rules.
Too often disability is presented as tragic. Depictions on film and TV tend to be simplistic and one-dimensional. Without more people with lived experience behind the scenes as well as in front of the camera lasting change is unlikely. I find the assumptions about disability incredibly frustrating, but those most at risk from these misconceptions are people who are currently not disabled.
Only 17% of disabled people were born with their impairments, this means that over 75% of all disabled people acquire their impairments during their lives. Thoughtfully considering what disability really means in advance can help you manage if your circumstances suddenly change.
I first discovered Unlimited at a time when I was grappling with my own changing circumstances. I remember how excited I was to discover this incredible disabled-led arts scene.
Finding, funny, irreverent disabled artists making exciting, challenging work, rescued me from my own fears and pre-conceptions. Importantly, I saw my experiences as a disabled person reflected in ways that avoided the tired, complacent, narratives presented in the media. Discovering this vibrant scene and being able to share it with my non-disabled friends was instrumental in giving me the confidence to create Touretteshero.
Back in 2014 when we started work on my first stage show Backstage In Biscuit Land, I Googled ‘Tourettes Theatre’ and nearly all the top results were accounts of people with tics being asked to leave or sit separately. We set out to make a show that celebrates what tics can add to the theatrical experience.
Our work’s like a Trojan horse, instigating structural change through creative productions, partnerships and events. We strip creative spaces right back to examine normative privilege, ensure access, and provide flexible spaces that work for people with different types of mind and body.
At Touretteshero we passionately believe that making art inclusive makes it better. Many of the most exciting and dynamic theatre I’ve seen uses access requirements like audio description or captioning in creative ways – embedding it into the fabric of the performance. There are some amazing companies working in this way including the legendary Graeae, and Scottish company Birds of Paradise. Access is an asset to be invested in – not an afterthought.
People tend to think about access like it’s a task you complete – I think it’s more helpful to think of it as an ongoing process we must all engage with every day because barriers have a nasty habit of springing back up.
While I believe that positive steps have been made in recent years, now’s not the time to be complacent. There are still way too many people who don’t see themselves reflected on stage, screen or in our cultural spaces. This is bad for the industry and it’s bad for us all.
A wealth of talent and creativity is going to waste, and seeing the same stories told by the same people over and over again is boring. This represents a financial as well as a social risk for the arts. Making space to celebrate broader stories and finding ways to connect talent to opportunity will lead to a stronger and more dynamic creative sector.
Unlimited 2018 has now taken place, but you can find out about all our other accessible events at Southbank Centre, including BSL and speech-to-text translated performances, touch tours and more, by signing up to the Access List.