For anyone old enough to remember, in 2011 Rihanna found love in a hopeless place. That place, if the video is anything to go by, turned out to be County Down in Northern Ireland. The song, with its catchy chorus, went to number one and spent an astonishing 63 weeks in the UK charts.…

Last year we launched the Touretteshero Welcome Pack, a set of artist designed letters that we provide free to children who are newly diagnosed with tics or Tourettes, and their families. The welcome pack includes letters to the child, to their parent/carers, and a version for them to give to their teachers and friends.…

If living with Tourettes has taught me one thing it’s that brains are incredibly complex and that medical understandings of neurological conditions and the reality of living with them can often feel quite different from each other. For the rest of this post, I’m delighted to hand over to Touretteshero Senior Producer, Nisha for a post about Epilepsy, shifting perspectives and organists.…

It’s been four years since we launched our Practical Intervention Fund (PIF). The fund enables disabled, deaf and neurodivergent people to experiment with different items which can support their wellbeing, without having to worry about the cost.

Last year, the format of the PIF changed so that we could continue providing items but in a more manageable and environmentally sustainable way.…

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%.…

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.…

I started writing this last week, but before I could post it, a load of things happened much faster than expected, so this is an updated version of that draft.

I started by reflecting on something I’d been doing every morning and every evening, for a few weeks, only in the bathroom and only when I was on my own.…