Moments of Breakthrough and Breakage

So that’s another year done! In just a few hours we’ll say goodbye to 2023 and welcome in the New Year. For the Touretteshero team, 2023’s been a year of contrasts. We’ve had incredible moments of joy, making and touring new work and becoming an Arts Council England (ACE) National Portfolio Organisation (NPO), and Biscuitland was nominated for a BAFTA! But we’ve also had to navigate some big challenges, individually and collectively. Our team experienced significant bereavements and illness in 2023, but we’ve steered our way through these challenges together, doing our best to do this with care and kindness for each other and for the communities we’re part of.

We recently had an end-of-project meeting with funder Paul Hamlyn Foundation. To prepare for this I drew a timeline showing the breakthroughs their support over the last six years has made possible. Inspired by this drawing I decided to create a similar image for 2023, mapping out landmark moments for us creatively, organisationally, and personally – so here’s what 2023 looked like for us!

A digitally drawn image by Jess Thom showing a timeline of 2023 a bold black line runs centrally and horizontally across the image, along this line are the months of the year starting with January on the right and December on the left of the image. Coming off the central line both above and below it are twenty colourful circles of different sizes. Each circle represents one activity from the year. Above the line these include creative activities like Touring our new show burnt out in Biscuit Land, a children’s event called Journey to A Better World or going to the BAFTAS. Below the line are activities that are more organisational some of these are positive like becoming a National Portfolio Organisation (NPO), or our Practical Intervention Fund (PIF) for other disabled people but some are less positive like Team Bereavements and illness. You can find out more about the activities on the timeline in the end of year post this image is part of.

In January we cracked on with NPO preparations. Getting this regular funding from ACE for the next three years gives us greater stability and opportunities to grow our team, our services, and our ambitions. It also means we have additional responsibilities, which our newly formed Touretteshero Advisory Group (TAG) are helping us navigate. As a disabled-led organisation we often have to invent our own approaches because pre-existing ways of doing things aren’t usually accessible for us. This has definitely been the case in our journey to becoming an NPO and means that some aspects are taking us longer than if we weren’t a disabled-led organisation.

At the end of January we went to Istanbul to take part in a British Council disability arts event. It was my first time in Turkey, and we were made incredibly welcome. Tragically, just hours after we left, Turkey and Syria were hit by a devastating earthquake. We’ve held the Turkish and Syrian people affected in our hearts throughout this year, along with all those impacted by natural disasters, climate change and conflict.

In February and March our attention turned to the production phase of our new show Burnt Out In Biscuitland (BOBL), which we made with the support of the Collaborative Touring Network (CTN).

As someone Clinically Extremely Vulnerable (CEV) to COVID, there have been moments in the last few years when I wasn’t sure if being an artist was still possible for me. Making and touring BOBL in a way that unapologetically centred disabled people, made me feel hopeful and meant that I could see a future for myself as a CEV artist. One of the most exciting elements of BOBL was our partnership with Unlimited and CTN to commission new works of art by local disabled artists that linked to the themes of the show. A different piece was shared at each of the eight CTN tour locations.

In April we shared ‘I Generate Bears,’ a project and exhibition with the Roundhouse. This involved a collaboration between my tics and AI to create sets of images that explore automation, creativity, and authorship. Also in April we officially became an NPO, and kicked off our BOBL tour in Bridlington.

A Photograph of Jess Thom, a white wheelchair using woman in a pool of light on a dark stage in Bridlington during the tour of Burnt Out In Biscuit Land, Jess is wearing a bright pink tracksuit and has her arms open in welcome. A British Sign Language Interpreter and a broken fridge are just visible behind her.

Leftwing Idiot and I were touring BOBL throughout May, June and July while the rest of the team kept everything else moving. This included a new round of our Practical Intervention Fund. We got a huge number of applications, over three times more than we initially had funding for! This illustrated the huge level of need in our communities, and we moved our budgets around so we could provide support to as many people as possible. In the end 80 disabled children and adults received practical items to support their wellbeing that they wouldn’t otherwise been able to get. A further 30 households were supported by our Winter PIF that, in collaboration with trusted partners including other disabled led organisations, schools and community groups, focuses on access to food. Though our surprise nomination for a BAFTA didn’t get us an award for Biscuitland, we did get to experience the incredible work on access that BAFTA has done with the excellent Triple C.

In the photo, an adult and a young child are engaging in messy play. The adult is on the right wearing an orange t-shirt, a black head scarf, and mirrored sunglasses. The child, dressed in a pink shirt and purple shorts with braided hair is on the left. Both are gathered around a blue plastic table filled with a gloopy, cornflour mixture which drips from their hands.

Throughout the autumn our team was managing illness and bereavement. I was unwell several times this year, including finally getting COVID, which wiped me out for several weeks and meant I had to recalibrate my expectations around energy. Illness or loss of loved ones has affected almost everyone one way or another.

Despite these setbacks we were delighted to share Journey To A Better World as part of Liberty Festival in Croydon in September. 384 disabled and non-disabled children and adults came together over two days to play, explore, create, connect, and imagine a better world together.

On top of the complexities of running an arts organisation at a time when the whole creative sector is struggling, being disabled-led means that we’re also constantly navigating non-accessible systems, whether that’s in or outside work. This year I’ve been tracking the time I give to organising and managing my social care support. I shared my findings here, alongside some images that aim to make this labour visible. Katie Evans developed this idea further with this incredible map.

In the run up to Christmas our team focused on getting everyone safely to the end of the year in one piece, and on setting up some exciting new projects for 2024. These will include opportunities for young disabled people to contribute to a new zine called The Department for Wonder and Play. We’ll launch the new Touretteshero website that we’ve been working. This will provide a fresh new home for this blog and for our communities. We’ll also start working on Rebel Play, an intergenerational, disabled-led, practice-based research project to document the positive play experiences of disabled children and adults. We’ll use what we discover to inspire new accessible play activities. I’m also super-excited that we’ll be sharing a Welcome Pack that we’ve made for children and young people newly diagnosed with tics and Tourettes, and some Protective Gloves for Tics that we’ve made with the skilled support of El Sheriff and Karen Arthur – more on these in the New Year.

We’re not alone in having faced significant challenges in 2023, but it can sometimes feel overwhelming, lonely, and exhausting, navigating disabling barriers. So, over the festive break we’re all resting so we’re ready to greet 2024 and support each other to manage these complex realities.

To everyone who’s supported us in this year, thank you, and here’s to 2024 – a year in which we plan to keep working for a more creative, inclusive and socially just world.

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