Content Notice: References to genocide and Euthanasia

In 2016 much to my surprise and delight I became a Wellcome Trust Engagement Fellow. This Fellowship from an internationally recognised health research foundation allowed me to create new work and start new conversations about the intersections between disability culture, ethics and research.…

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.…

Is it just me or is it feeling a lot like the 1930s all of a sudden? I’m giving myself permission to ask big questions like this in part because I’m not working at the moment. The reason why I’m not doing the job I love is because of the sudden and unexpected cuts to my Access to Work support.…

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: 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.…

I’ve had a new tic for the last few weeks. It’s frequent and consistent and leading to lots of conversations, some intense, some interesting, and some challenging.

This new tic is: “Long live Palestine, long live Gaza.”

This is a tic.…

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.…

It’s Friday evening and I’m exhausted and sad. Ines, my support worker, is changing my sheets in the other room, Gogglebox is on in the background, and I’m fighting back tears, and have been all afternoon and evening.

As a warning to you, I’m not feeling very proud of, or positive about my neurodiversity at the moment, and I’m feeling annoyed and worn out by my own behaviour.…

Here at Touretteshero we have what we call the ‘Ideas Shelf’. It’s an imaginary shelf and we put ideas for future projects, events or services on it. These ideas are then ready to be taken off the shelf when the right opportunity, partner or funder comes along.…

Three years ago today, on the morning of Wednesday 14th June 2017, the country woke to the news of a devastating fire at Grenfell Tower. Later we would learn that 72 people, 18 of them children, had lost their lives. I’ll be marking the anniversary of this tragedy by filling the castle windows with green light in solidarity with Grenfell United and all those affected by the fire.…