Culture

My Job Hasn’t Changed, My Disability Hasn’t Changed, So Why Has My Support Changed?

A photo of Touretteshero co-artistic director Jess Thom, wearing a blue and green hoodie and looking serious. White text on the right of the image reads: Under Labour I've Been Forced To Stop Working Here's Why. This is the thumbnail from a YouTube video in which Jess speaks directly to camera from her wheelchair.

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.…

What’s In A Name?

A digitally drawn image showing a single rose with an adapted Shakespeare quote above it in black text it reads: "What's in a name? That which we call Tourette’s by any other name would be as complex."

A few years ago an article was published in the British Medical Journal (BMJ) about the relationship between social media and increased instances of tics. I had significant concerns about the article which I wrote about here. I ended that post by saying:

“I understand the impulse for clinicians to theorise and share ideas with others, but I’d also ask that this be done with care… Clinicians’ opinions often hold a lot of weight so I ask them to be aware of this and be thoughtful about how their views might impact people’s lives.”