A couple of weeks ago some colleagues and I gathered round a phone in the Touretteshero office to speak to my newly allocated caseworker from the Department for Work and Pensions about my Access to Work application for the year. My support usually runs from April one year to April the next, but this year, two weeks after it was due to renew, I got the news that my award was to be cut by 61%.…

Shortly before my emergency pacemaker operation at the end of March, I had a meeting with a couple of my colleagues to talk about what should happen to our company if I didn’t survive the procedure. This conversation was a lot to take on at that time, specially as it came so soon after Liz’s death, but it felt necessary, and the result was a set of principles that I hoped would ensure that the spirit of what we’d created remained healthy and strong if I didn’t make it.…

Fifteen years ago, I co-founded Touretteshero as a creative response to the increasing impact that my tics were having on my life. I also started writing this blog. Over the years I’ve tackled some tricky topics, both personal and political. I’ve found the words to describe my changing mobility, reflect on the impact of increasing pain, talk about the emotional impact of hate crime and most recently, detail the risky heart surgery I had in March.…

Content warning: Descriptions of medical procedures and internal anatomy

On Valentine’s Day I wrote about the health issues I’ve been experiencing since the start of the year. To recap, my pacemaker battery box has moved so it’s now in the wrong place, and the leads that run from the box to my heart are blocking a big vein and affecting my blood flow.…

Content Warning: Description of death and hate crimes

Fifteen years ago when I tentatively started writing this blog, unsure of what I had to say or how I wanted to say it, there were a handful of people whose gentle support, tireless encouragement, interest and love gave me the confidence to keep going and to write about complex, nuanced experiences with care and honesty.…

Content warning: Descriptions of medical procedures and internal anatomy

Today is Valentine’s Day so it seems appropriate to give you an update on the state of my heart. At the end of last month I wrote about some new and unexpected changes to my health that I’ve been experiencing recently.…

It’s a Sunday evening, I’m at home in bed, reflecting on a week that’s taken unexpected turn. Because these developments have implications for the weeks ahead, I’m writing this as an update for my friends, colleagues and collaborators, so you know what’s going on, and why things might need to shift at short notice.…

In April 2023 Touretteshero became an Arts Council England (ACE) National Portfolio Organisation (NPO). This means we get funding for the next few years to support our creative activities. It also means we’re able to grow our team, making loads of exciting projects possible.…

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.…

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.…