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Complexities of Care

23rd 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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Burnt Out In Biscuit Land Tour Reflections

11th July 2023
A digital drawing made up of a nine circles in a grid formation three circles by three circles. The circle at the centre contains a drawing of the blue and white Touretteshero van. The eight circles around the edge each have landmarks from the different towns visited on the tour these are: Wigan, Bradford, Bridlington, Stoke on Trent, Peterborough, Torquay, Gloucester and margate. The drawing is colourful and in a blocky, graphic style.

We got back yesterday after almost three months of touring our new show Burnt Out In Biscuit Land (BOBL). When we set out for the first stop back in April I had no idea how audiences would respond to the show.…

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Transitions Reimagined

19th 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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“Oh Biscuits!”

18th June 2023
A photo a Lego Bee-Bublance, an ambulance for bees. The view looks down on the creation made out of yellow, white & blue bricks. There are two bays for tired bees and a feed platform that holds a small plastic spoon containing sugar water

I was looking after my niece Bean and nephew Sausage earlier today. While Sausage had a nap, Bean focused on making a Bee-bulance – an ambulance for bees. They’d arrived late at the castle for a play date in part because Bean had stopped twice to administer first aid to bees.…

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Support Worker Wanted

12th June 2023
A photo of Jess Thom a white woman with short curly hair sitting in her bright blue wheelchair. Jess is wearing a tracksuit with a cherry motif and is smiling at the camera.

Last year I led a creative project called Invisible Touch. It explored the relationship between physical touch and the experience of giving and receiving care. As part of this I interviewed other disabled people who had experience of care, and you can find them here.…

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Return of the PIF

9th May 2023
A circular purple hand drawn logo that reads ‘PIF’ in large purple gradient letters and the words ‘Practical Intervention Fund’ above and below the abbreviate in smaller purple lettering. The words sit within a cloud bursting with objects like ear defenders, cutlery and a water bottle.

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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I Pledge Allegiance

6th May 2023
A digital drawing by Jess Thom of one of her involuntary tics in response to reading about pledging allegiance to the King. The tic is written at the bottom of the image and reads: “I Pledge Allegiance to the roots of rebellion, to the leaves of love and to drainpipes in a storm.” The drawing illustrates this tic. At the top of the image ominous grey storm clouds pelt rain into a network of interconnected drain pipes. Below this is a hundreds of tiny hearts bunch together like blossom some blowing loose around the image – others forming a colourful riot of tiny hearts. Beneath this a base of protest placards give way to a colourful mass of roots stretching out towards the bottom of the image. The elements are arranged to vaguely reflect the shape of a crown.

We’re back in London after the first week of touring Burnt Out In Biscuit Land. We came back through central London which is already heaving with flags for the coronation next week.

I read an article about the pledge of allegiance that will form part of the coronation ceremony.…

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Crip Culture, Prepper Culture

4th 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

15th 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

7th 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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