Challenges

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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Wheelchair Love UK - Early Day Essentials

15^th February 2023

A digital drawing by Jess Thom. A bright read heart sits at the centre of the image, around this are eight wheelchairs of different types including a chunky black NHS wheelchair, all terrain chairs with massive wheels, folding chairs and a fancy powered trike.

I love wheelchairs! I love what they’ve made possible for me and I love sharing what I’ve learnt about them with others. I even wrote an A-Z of everything I know about wheelchairs. That post is very detailed, and it might be a bit overwhelming to someone new to using a chair, but I also hope that it’s useful.…

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To Turkey With Love

7^th February 2023

An Istanbul city scape drawn by hand on an ipad. The image is roughly square at the top the horizon is the sea with an industrial ship floating on calm water and a submarine breaking the surface. Beneath this are the elegant shapes of mosques and a royal palace. At the centre of the image is a large hotel and several other tall buildings, their many windows a patchwork of different colours. Nestled amongst the tall buildings are older ones including a former brewery that is now an arts centre with colourful light glowing within. A network of streets jut off at steep angles to represent Istanbul’s hills. The drawing is colourful and detailed like the city.

Since last Tuesday we’ve been in Istanbul. I’d been mentally writing this post all week, excited to share one of the few bits of international work we’ve done since the start of the pandemic. But this won’t be the blog post I was planning because just hours after we left, Turkey and Syria were hit by a huge earthquake which has caused massive loss of life and left many more homeless.…

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A Year of Imagining

31^st December 2022

Over the last couple of weeks, the Touretteshero Team has been resting and relaxing, the Christmas holidays being the only time each year that we all stop together. This has given me a chance to think about everything we’ve done together this year.…

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Challenges

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

Wheelchair Love UK - Early Day Essentials

To Turkey With Love

A Year of Imagining

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