Challenges

Support Worker Required For Art and Adventures

1^st February 2024

A photo of Jess with a support worker in a colourful installation. Jess is in her wheelchair on the right of the image wearing a bright blue tracksuit. Her support worker is on the left on the image in a bright orange t-shirt, both are masked and are surrounded by colourful streamers and spherical paper lampshades.

I’ve never written an online dating profile. I did start one once but found the mix of expectation, self-promotion, and the pressure to be funny overwhelming. So, I abandoned the idea. But I’m also finding writing this post, which has some similar qualities, quite daunting.…

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Moments of Breakthrough and Breakage

31^st December 2023

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.

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!…

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Neurological Solidarity

29^th October 2023

A digital drawing for Gaza by Jess Thom that reads Ceasefire Now, this text is made from many small hand drawn hearts outlined in black and filled in, in red, green and white, the colours of the Palestine Flag.

I’ve had a new tic for the last few weeks. It’s frequent and consistent and leading to lots of conversations, some intense, some interesting, and some challenging.

This new tic is: “Long live Palestine, long live Gaza.”

This is a tic.…

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Don’t Relax Your Commitment

26^th October 2023

A digitally drawn image with Touretteshero at the centre in her blue and white superhero costume her arms open in welcome, audiences of disabled and non-disabled children and adults are visible behind her. The text reads: Do Not Relax! underneath in smaller text and in brackets it reads: [your commitment].

I love theatre, both as a performer and as an audience member, but as I’ve written and spoken about before, attending performances as someone with Tourettes isn’t always easy. It’s even harder at the moment because I’m Clinically Extremely Vulnerable (CEV) to COVID-19 and so being in busy indoor spaces with no COVID Related Access Provisions isn’t safe for me.…

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In Vulnerability

21^st October 2023

A digital drawing by Jess Thom of a bright yellow fruit machine, the top of the machine is rounded with marks that indicate lights forming a semicircle at the top. This semi circle section is a riot of bright colours, graphic style images and includes the words Tic Attack. There are typical depictions of fruit but also less traditional imagery like a body in motion and a speech bubble with LOS written in it, which is short for Loss of Speech. The main body of the machine has a lever on the right-hand side that spins the machine. Written across the three sections of the machine where you would expect fruit to be represented is the word vulnerability.

Today is my twelfth ‘Fitiversary’ – twelve years ago today I woke up moving about frantically and uncontrollably. I’d lost voluntary speech and was experiencing painful dystonic tics which twisted my body. These episodes had been happening on and off for a while and I’d initially referred to them as the ‘dying fish’, but twelve years ago they became a much more regular part of my life.…

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The Lonely Reality of Avoiding Being Alone

22^nd September 2023

A digital image by Jess Thom, black title text reads – Visualising Care, six months of care related labour. The image below is made of colourful dots each with a black outline, these are grouped by six type of labour. The biggest quantities are at the top of the image, on the left are 276 blue dots showing care communication and on the right 136 green dots show cover. Below these are four smaller groupings of dots, yellow for care admin, red for disruption, black for support gaps and the smallest number of 30 dots is purple representing relationship strain.

As someone who requires skilled support 24 hours a day I’m never really on my own – but if I am it’s because I’ve failed. Failed, that is, to meet my most basic need, the continuous presence of someone who can keep me safe, someone who can administer emergency medication if necessary, who can prevent friction burns from my repetitive movements, or who can turn me over so I can breathe.…

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Complexities of Care

23^rd July 2023

A greyscale digitally drawn image of a person ill in bed. They are in a profiling hospital style bed and are under a patterned duvet their eyes are closed. A black and white cat is asleep on top of them.

I’ve been unwell for over a week with a cold or some other miscellaneous virus I picked up from a colleague. While I’ve felt pretty ropey the illness itself has been nothing out of the ordinary, but it’s dragged on, and whenever I’m unwell, particularly with any sort of infection, the seizure-like intensifications of my tics increase dramatically.…

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Transitions Reimagined

19^th June 2023

A digital tool for helping support transitions. A landscape A4 page is split into two sections the one on the left focuses on Leaving and the one on the right Ariving. Both Have three headings stacked in a column the read: Now - Prepare, Next - Focus, Then - settle. There is additional detail for each stage that includes things like - agree transition time, Body Prep e.g. have a wee and agree first task. The tool aims to help provide a consistent framework for leaving and arriving places.

Yesterday we arrived in Torquay for stop six of our tour of eight UK towns and cities with our new show Burnt Out In Biscuit Land. We’ve been to Bridlington, Gloucester, Bradford, Margate and, most recently, Peterborough. After Torquay we head to Stoke-On-Trent and lastly, Wigan.…

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Return of the PIF

9^th May 2023

I can’t believe it’s been two years since we launched our Practical Intervention Fund, which provides small items related to wellbeing and relaxation to deaf, disabled and neurodivergent people of all ages. We’ve run two rounds of the fund so far, with each receiving lots of interest.…

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Crip Culture, Prepper Culture

4^th March 2023

The poster for Burnt Out In Biscuitland by Touretteshero the main image is three people stare directly at the camera and are each wearing different coloured, knitted balaclavas where only their eyes and mouths are exposed. They are all wearing black stab vests with the words ‘NO DNR’ stencilled onto the vests in white paint. Charmaine is on the left of the image. She is wearing a knitted green balaclava and blue knitted snood. Chopin is on the right of the image. She is wearing a red and orange knitted balaclava. She is tugging the top of the stab vest with her left hand. Jess is in the centre of the image between Charmain and Chopin and is staring straight at the camera. She is wearing a blue and pink knitted balaclava. Poster text reads "We Refuse To Give Up Our Joy" and "Coming Soon" The partner logos run across the bottom of the image

Preppers are people who plan for emergencies in practical ways. Exactly what they’re preparing for varies but can include natural disasters, economic crisis, civil unrest, or a zombie apocalypse.

Prepper culture focuses on self-reliance, making detailed plans, stockpiling essentials, and doing everything possible to support survival in a catastrophic breakdown of society.…

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Challenges

Support Worker Required For Art and Adventures

Moments of Breakthrough and Breakage

Neurological Solidarity

Don’t Relax Your Commitment

In Vulnerability

The Lonely Reality of Avoiding Being Alone

Complexities of Care

Transitions Reimagined

Return of the PIF

Crip Culture, Prepper Culture

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