It was World Book Day a couple of weeks ago and primary school children across the land dressed up as their favourite characters, to celebrate the power of stories. This got me thinking about the books I loved as a child, and the stories about disability and neurodivergence which I looked for but never found.…
Joyce has been supporting me for around seven years now. She started as an agency carer but when that agency stopped supporting people in my area, she came to work for me directly.
Joyce is amazing – she’s patient, thoughtful, kind, funny, and an excellent cook.…
It’s New Year’s Eve, a time when we take stock of the year that’s been and look ahead to the next. Usually, I write a post about everything that’s happened, but this year I decided to represent it as a drawing instead.…
Almost every year since starting Touretteshero we’ve made a funny Christmas video. My favourites include this animation and this royal message. Last year we kept things simple and shared a heartfelt message of solidarity.
When it came to writing this year’s message, I just wanted to say what was on mind – the unchecked COVID-19 infections and the reality that those of us with additional risk factors are being left behind.…
Every year since Touretteshero began, we’ve created a Christmas card inspired by a festive tic. We’ve had some amazing guest artists including Jim’ll Paint It, Amber Anderson, Ben Connors and Richard Phoenix.
We usually do a big mail-out and send cards to our partners, collaborators, friends, and allies, but this year we’re doing things differently.…
On Friday I got an email confirming that the funding for my care at home has moved from Social Services to the NHS. This is known as a Personal Health Budget (PHB). They also sent me a breakdown of the hours and costs involved, and this is the first time in over a decade that I’ve fully understood both my support plan and the money that relates to it.…
Joyce waved me goodbye at the back gate, wearing her colourful apron and a massive grin. She watched me until I’d turned the corner and I waved back just before I vanished out of her sight.
It was a crisp autumn night and the sun had set an hour before as I made my way carefully through the leaves, and through the pedestrians making their way home.…
It’s been almost ten years since I moved into the castle, it’s been the same length of time since I started needing overnight care.
Initially I lived with my flatmate Poppy, and my support worker would sleep on a fold out bed in the living room.…
I wrote recently about burn out and the steps we take at Touretteshero to help prevent it. While I’m lucky not to get burnt out by my work as an artist, I’m feeling utterly exhausted by the relentless work of being a disabled person living in the UK.…
In January I wrote with shock and deep sadness about the loss of our colleague David to COVID-19. I shared some of the many things I’d learned from him, a man whose energy and passion were immense and whose commitment to improving the lives of children and young people was unwavering.…
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