When people think about what it means to require care, especially if it’s 24 hours a day as I do, they often think of it as a ‘worst-case scenario’. For me, this couldn’t be further from the truth. Having a package of support that meets my needs gives me the independence to live and work as I choose. I never take this for granted because I know that lots of disabled people don’t have the support they require. But getting the right support agreed by social services, the NHS or Access to Work is only the first part of a much more complex process, the most crucial part of which is finding the right people.
For the last few years my support at work and at home has been relatively stable, with an amazing group of Personal Assistants (PAs) helping me navigate both the pandemic and the growth of Touretteshero.
My main in-work PA, Claire, has been key to this stability. She came with me to New York when I performed ‘Not I’, we’ve travelled across the world for festivals, children’s events, and countless training sessions. Claire’s skills and her knowledge of my work, my body, and my brain helped me navigate amazing and stressful situations alike.
Good support is about working as a team, and this is exactly what Claire and I have done together for over three years. But sadly, she’ll be leaving at the end of this year, and that means big changes ahead.
The role of my work PA can be incredibly varied. In the last few months alone, it’s included supporting me on set as we filmed our TV pilot Biscuitland and creating a wheelchair-accessible spaceship in Germany. But there are also the mundane realities of day-to-day life: domestic tasks, personal care, answering emails and helping me manage the relentless bureaucracy that comes with being a disabled person in the UK. Having a great PA enables me to be co-artistic director of Touretteshero without risking my health and wellbeing.
Claire’s supported me outside of work too. We’ve often collected my niece from school and enjoyed many conversations about the differences between unicorns and alicorns with her on the way home. Claire was with me as we welcomed my new nephew, Sausage, to our family.
If you asked Monkey, he’d tell you my PAs are there exclusively for him – feeding him, cuddling him, and letting him in and out at his whim.
Being a PA is an unusual job. In many roles you don’t have to like the people you work with, but when you’re spending lots of time together, when someone’s in your home, and is a vital part of your work and domestic life, it matters that you like, trust, and respect each other.
Changes in my support can be tricky. It feels hard to start from scratch with someone new and I’ll miss Claire immensely. But I also feel really excited for her and her future. I’m glad to say she’ll be helping me recruit whoever comes next. I’ve been reminding myself that while this transition always feels daunting, change has led to incredible new relationships and friendships – Claire, Will, Fran, Innes, Ines, Zoé, Jen, Trina and Erik were all once new too.
Lots of disabled people are struggling to recruit PAs and support workers at the moment. These roles are crucial to our lives, but they’re poorly understood.
When people think about what makes a good support worker, they’ll often identify qualities like kindness, patience, and compassion. These all help, but I’d say that being calm, confident, consistent, and attentive are also crucial, as well as having a sense of humour!
Thank you, Claire, for three years of skilled, sensitive, and thoughtful support, and so many other incredible things as well.