Jess, who’s currently performing at the Festival in her award-winning show Backstage in Biscuitland, has Tourette’s Syndrome. This means she makes sounds and movements over which she has no control. Jess swears – she’s one of about ten percent of people with Tourettes who do. She also says ‘biscuit’ a lot, up to 16,000 times per day, in fact.
On disability arts at the Fringe, Jess told The Guardian:
Last year was my first Edinburgh festival fringe and I saw more theatre in three weeks than in my whole life. I have Tourettes syndrome, a neurological condition that means I make movements and noises that I can’t control, called tics. In addition to saying “biscuit” thousands of times a day, having Tourettes affects my mobility, so I use a wheelchair to get around.
In the past I’ve found it difficult to access live performances because of my tics. Three years ago I vowed never to go to the theatre again after being asked to move from the auditorium to a sound booth halfway through a show.
Thankfully, this was a promise I wouldn’t keep. Instead it sparked the start of my journey to the stage (the only seat in the house I knew I wouldn’t be asked to leave) and led to my show, Backstage In Biscuit Land.
I was warned that Edinburgh’s steep hills, cobbled streets and old buildings made wheelchair access tricky. More frustrating was the lack of cohesive access information and some thoughtless planning. When collecting tickets at one accessible venue, for example, I discovered the temporary ticket hut had been built with steps!
Encouragingly, improving access is something the Edinburgh Festival Fringe Society is taking seriously, highlighted by chief executive Kath Mainland’s comments earlier this year. But this is about more than physical access. Last year I was disappointed that disabled artists weren’t better represented. Audiences were missing out on the vibrant, high quality and gloriously diverse work the disability arts scene offers.
But there’s no time to be complacent. Disability isn’t a niche issue, with almost one-fifth of the UK population identifying as disabled, and the fringe sets an international arts agenda, so it’s vital that it become a world leader in showcasing disability arts and inclusivity.
Difference is brilliant, and I can’t wait to be part of a fringe where it’s visible, audible and celebrated in all its forms. It’s time for disability arts to take centre stage at the fringe.
You can read the full article, also featuring Jack Thorne and Cian Binchy, here.
In 2010, Jess set up Touretteshero, an organisation that celebrates the humour and creativity of Tourette’s without mocking or self-pity – it’s about reclaiming the most frequently misunderstood syndrome on the planet and changing the world one tic at a time.
Welcome to Biscuit Land follows a year in Jess’s life with all the ups and downs that go with having Tourette’s Syndrome. Educational and hugely entertaining, these excerpts from Jess’s personal blog show the whole spectrum of her experiences.
Moving, funny, shocking, tender, and inspiring, Jess’s words are courageous and optimistic in the face of the major challenges she faces.
“A role model for people across the country struggling to come to terms with the condition… Welcome to Biscuit Land has become an invaluable resource for families coping with Tourette’s.”
Backstage in Biscuit Land is at the Edinburgh Festival Fringe between 24th-30th August. Tickets are available here.
Welcome to Biscuit Land by Jess Thom (ISBN: 9780285641273, £12, available in eBook and paperback)