Happy New Year! We’ve made it to the end of 2018. For the Touretteshero team the year’s been crammed full of activity, events, touring and TV. As with most years there have been some incredible highs, and some painful lows as well.
When I was thinking about how I wanted to reflect on the last twelve months in my final post of the year, I kept thinking of images rather than ideas.
So this is a visual tribute to 2018. I’ve picked my twelve favourite photos and drawings of the year. There’s a bit about what each one means to me, and a brief description of each image to explain it.
January – Pain Relief Flows
Image Description: A black and grey flow chart starting with the question ‘Are you in pain?’ A series of yes/no options helps you decide what methods of pain relief to try.
For the second year running pain has been a dominant feature in my life. Sometimes this has been very tough, but I’ve also had lots of incredible support and have slowly been adapting to my changing body. My pain management plan got off to a good start in January when I made this flow chart to help me decide when to take medication and when to try other approaches. I’m pleased to report that I’ve largely stuck to it and I’ve got much better at taking medication when I need it.
February – Heroes Of The Imagination
Photo by: James Lyndsey
Image Description: A group of around two hundred children and adults, many dressed as superheroes, are sitting and standing in a semicircle listening to Touretteshero tell a story.
I was so excited that Touretteshero was asked to take part in Imagine, the Southbank Centre’s annual Children’s Festival. We ran a weekend of superhero-themed activities and over 2000 children and adults transformed themselves into their super-alter-egos. They made capes and masks, and perfected their special moves. We have loads of incredible photos from the weekend but I chose this one as it was a big highlight for me. In it I’m reading the story of Winnie the Witch: some people might have been disappointed I didn’t choose a superhero-related story, but I went with Winnie because it’s got an important message about accepting people (and cats) as they are. You can read more about why this story is important to me here. Seeing so many families taking part together in imaginative, inclusive activities felt overwhelmingly brilliant – thank you to everyone who helped make this possible.
March – Not I
Image Description: A photo that is mainly black with two lit figures at its centre. One figure is of a white woman (me) with only my lips and cheeks visible – appearing to float in mid air. The other, on the left, is of a mixed-race woman, Charmaine Wombwell, who’s bathed in light from her waist up. She’s performing in British Sign Language and is mid-sign.
On the day our three-week run of Not I opened at Battersea Arts Centre it snowed, and it snowed on the night of the last show as well! Despite the freezing weather we had incredibly, warm, thoughtful audiences. At the start of the year I think we were all quite nervous about whether I’d have the energy to perform this intense monologue for three whole weeks. It wasn’t always easy but I really did enjoy the run. It felt amazing to introduce new people to Mouth, a character we’ve all come to care about a great deal. Charmaine’s an incredible performer and I loved the time we spent working and hanging out together.
April – Biscuits Without Borders
Photo by: Leftwing Idiot
Image Description: A photo taken from above showing a room being set up for an event. The Touretteshero logo is projected onto a large screen. Fluorescent pink tape on the black floor marks out areas where people can sit – there’s a mix of cushions and chairs to choose from.
In April we were back in New York at BRIC, a Brooklyn venue that has an incredible creative programme. They describe themselves as ‘hyper-local’, which means they work very closely with the communities in their immediate neighbourhood – which includes people from all over the world. I took part in their annual festival ‘BRIC Open’ which had borders as its theme this year. I closed the festival with an event called Biscuits Without Borders and I talked about the visible and invisible barriers that exclude disabled people from public spaces. The talk ended with an informal meal. I’m very lucky to have opportunities to take part in events like this and to meet disabled people living in other parts of the world. It’s helped me appreciate how important it is to ensure that conversations about access and rights happen across international borders.
May – Stand Up, Sit Down, Roll Over
Photo by: Leftwing Idiot
Image Description: A white woman with short curly brown hair (me again) is sitting on a beach in a stripy t-shirt. I’m buried up to my knees in sand and I’m smiling up at the camera.
After Brooklyn we headed to Portland for two weeks of comedy and collaboration with Boom Arts in Portland. It was great spending time in a new city and having more detailed conversations about the power of shared laughter in shaping change. This photo was taken on a blissful day-off at the beach. I’ve got some incredibly happy memories from this trip which I’m sure I’ll treasure for a long time. It was all helped because cannabis is legal in Oregon, which meant I slept and ate better than I had done for many months.
June – From Spine To Sky
Image Description: A colourful hand drawing in a sketchbook, mapping out a room starting from a red spine and going up to a yellow sky. Many other small drawings are linked together by black lines indicating their relationship to each other. These include: a bed, two wheelchairs, several blankets, a bench and a lamp-post to name just a few. At the bottom there is a key and the title of the drawing: Pain Pathways – From Spine To Sky (via the Lamp-Post).
Back in the UK and without access to the cannabis gummies that had been helping me manage my pain while we were in Portland I struggled to sleep and to feel well. I did several drawings mapping out my pain to help me understand and process it. I specially like this one as it includes my lamp-post.
July – Me, My Mouth and I
Image Description: A photo showing two white women sitting in giant metal ash cans – actor Liz Carr is on the left and I’m on the right and we’re both smiling.
At the end of last year the BBC, Arts Council England and Battersea Arts Centre gave us the opportunity to make a show as part of series of programmes called Performance Live. In order to make sure that we were in control of how disability was talked about, and that we got to make the film that we wanted to, we became a TV production company. We worked closely with our director Sophie Robinson and her team at Sunshine Pictures. I’m really proud of the film we made and in particular of how many disabled women featured in it. This photo of me interviewing comedian, actor and activist Liz Carr in oversized bins is one of my all time favourites.
August – Brewing In Battersea
Photo by: Kevin Moran
Image Description: A very colourful photograph showing a group of fifty or so children and adults a moment after a confetti cannon has gone off. Colourful confetti is raining down on them, and many have their arms outstretched in joy.
If one image sums up what I think Touretteshero is about it’s this one, taken at our two-day, one-night event, Brewing In Battersea. It captures the joy and energy of the occasion perfectly. The event marked the re-opening of Battersea Arts Centre’s Grand Hall three years after it was ravaged by a devastating fire, so it was very trusting of them to let us use pyrotechnics to celebrate!
September – The Knowledge Exchange
Image Description: A cartoon-style drawing in blue and black pens by artist and live scribe Amber Anderson. There is a mix of text and images that record a conversation between disabled and non-disabled artists, academics and activists.
Touretteshero’s been able to have such a packed year thanks in no small part to the Wellcome Trust who support me and Leftwing Idiot as Public Engagement Fellows. One of the strands of new work they’re making possible is a series of experiments in how knowledge is exchanged. We’re interested in finding creative ways that people with professional and lived expertise can share perspectives, skills and information. The first of these took place in Sheffield in September and the conversations were expertly captured by Amber our amazing live illustrator and friend of Touretteshero. Next year Will The Cartoon Lion, (the third Touretteshero director) is going to be working with us more intensely to further develop the Knowledge Exchange series – watch this space.
October – Hacks For The Future
Photo by: Leftwing Idiot
Image Description: A group of disabled and neurodiverse young people sit in a loose circle, Touretteshero director Will, a white man in his mid twenties, is standing. In the middle of the circle is a pile of paper and colourful pens.
This autumn the Touretteshero team packed their thermals and headed to the UK’s most northerly city – Inverness. We were expecting cold, damp weather but instead we got bright sunshine and clear skies. We had an amazing two weeks working with two associate artists and eight disabled young creatives on Hacks For The Future a project in partnership with the National Theatre Scotland. The project ended with an inclusive creative event at Eden Court. I left Inverness feeling very hopeful about the future of Disability Arts.
November – Women Of The World Bradford
Photo by: Karol Wyszynski
Image Description: A photograph of a group of young children dressed as superheroes. In the background a red, white and yellow logo that reads WOW is visible – this stands for Women of The World Festival
Southbank Centre’s Woman of The World Festival takes place in London each March but there are also satellite events that happen in other parts of the country at different points in the year. We kicked off a period of touring Not I with a trip north to take part in WOW Bradford. The event was organised by local women and girls and the atmosphere and energy across the festival was incredible. The passion, politics and programme was utterly invigorating and left me feeling hopeful.
December – A Warm Hello
Image Description: A group of disabled people dressed in Christmas jumpers and Santa hats crowd around a computer, smiling and laughing. I’m in the centre wearing a blue mask and a pair of reindeer antlers.
This is a still taken from this year’s Touretteshero Christmas video. An amazing group of disabled volunteers answered our call for participants in this office party scene. Television’s Liz Carr fronted our ‘urgent appeal’ on behalf of ‘normal people’. While the appeal wasn’t altogether serious, the statistic behind it definitely is. A Scope study found that “67% of the general public feel uncomfortable talking to a disabled person.” This discomfort around disability is something we’re committed to challenging. Thank you to everyone who helped put this video together and to everyone who’s shared it online.
Since we first started Touretteshero back in 2010 it’s been the support, imagination and friendship of many, many people that’s enabled brilliant events, projects and performances to take place. Teamwork and collaboration is at the heart of everything we do, something I’ve appreciated this year more than ever as my body has struggled to keep up. To everyone who’s been part of that complex web of solidarity and creativity – thank you.
The Touretteshero team will be kicking off the New Year with two weeks of thinking, talking and planning. It’s exciting to have such a big chunk of time set aside to reflect on how we work together and to map out our priorities for the years ahead.
In 2018 I’ve learnt the power of pacing myself, of trusting in others and of embracing new approaches – lessons I’m looking forward to putting into practice in 2019.
However you’re welcoming in the New Year I wish you peace, laughter and as always, a generous sprinkling of biscuits.