We’re on the eve of a big anniversary, but for me the end of this decade has special significance. Ten years ago, Touretteshero was born, since then everything’s changed, and I’ve become a radically different person. As the clock struck midnight on 31 December 2009, that incredible transformation was well under way.
The shame and inadequacy I’d carried with me unknowingly for much of my life was lifting. As 2009 drew to a close I was just beginning to realise that far from being faulty, my brain and body could be a source of creativity and joy and that my perspective on the world had value.
The end of a decade is a natural time to reflect and take stock and I’m sure our screens will be bursting with ‘Best of…’ montages for the next few days.
This is the end of my fourth decade and before I look at what ten years of Touretteshero has taught me I thought I’d do a whistle-stop tour of my first three decades. I’ll also reflect on what I learnt during those years and make a promise to take into the future.
Confidence – 1980-1990
My First Decade was one of much happiness and some struggle. By the time I was ten I’d already internalised the array of ableist messages that surrounded me. I struggled at my first primary school and found learning new skills extremely hard. However supportive my family was, my confidence in myself took a battering. But in 1989 I moved schools and in just a few months my confidence started to soar.
I’d argue that it’s much easier to protect confidence than it is to re-build it. With this in mind, I promise to do everything I can to protect the confidence of disabled people, particularly children and young people, in the decade ahead.
Creativity – 1990-2000
My Second Decade saw a move to a new city and a new school. Many of the challenges I experienced during this period were invisible to those around me – for example, few people realised that my obsessive need to produce ‘perfect’ work meant that I was compelled to start from the beginning each time I made even a tiny mistake. I developed loads of strategies to manage my unusual neurology and behaviours and eventually found ways to learn that worked for me.
I still use many of the same strategies I learnt back then – big posters and colourful pens for when I need knowledge to stick, or recording anything that requires concentration so that I can listen back while I’m on the move.
By the end of the 90s I’d discovered art and was settling in at art college. My second decade was one of experimenting and adapting.
We don’t all do things in exactly the same way and different approaches are equally valid. Let’s work together in the years ahead to make sure talent and opportunity can find each other more easily. I promise to keep sharing what works for me in case it’s helpful to others.
Understanding – 2000-2010
My Third Decade was full of play, and to my never-ending joy and surprise play became my job! Working on London’s adventure playgrounds as an inclusive playworker I learnt more about creativity than any course I’d ever been on.
I also witnessed the struggles and immense strength of my community and colleagues. I felt the power of being part of a team and the importance of working together to oppose inequalities the families we worked with encountered. It was in the early noughties that I at last began to fully understand my own body and brain. By the end of the decade I had a diagnosis, an explanation and an emerging identity as a disabled person. I also had “biscuit” and my chest thumping tics that are still going strong today.
As we go into the next decade, working collectively to resist division, damaging political ideologies and systemic inequality is going to be essential. I’m going to share knowledge, opportunities and resources wherever I can. I can’t promise that my biscuit tic will stick around into the 20’s but I can promise to keep working towards a society that shares the biscuits and not just the crumbs.
Acceptance – 2010-2020
From the get-go, my Fourth Decade was all about Touretteshero – even though I didn’t know it at the time. I spent New Year’s Day 2010 on my own, so no one else would’ve noticed the monumental shift happening within me. I started the decade by allowing myself to do something I’d never done before: think creatively about life with Tourette’s.
This simple shift has led to some incredible experiences. We held our first event in 2010 and launched the website shortly afterwards. In 2012 my book Welcome to Biscuit Land was published and the following year I spoke about Tourettes and creativity at the Royal Albert Hall in front of 4000 people – this remains one of the most simultaneously terrifying and exciting moments of my life.
In 2014 we made a Backstage in Biscuit Land and took it the Edinburgh Fringe where, much to our surprise, it sold out and won an award. We took part in Live From Television Centre in 2015, in which I got to sing about cats and dance with biscuits live on TV, and in 2016 we toured Biscuit Land to Canada, the USA, Australia and around the UK. Performing at the Sydney Opera House was particularly awesome.
In 2017 we took over the fifth floor of Tate Modern’s new building for an immersive adventure in Biscuit Land. In 2018 I returned to the stage with a neurodiverse presentation of Samuel Beckett’s short play Not I. This year I curated a two-week Festival of Rest and Resistance at Battersea Arts Centre, and we have big plans for the future, starting with a trip to New York in January to bring Not I to the Under The Radar Festival. All of this has been achieved with the help and support of many incredible people and organisations – thanks to you all!
The last decade has included some big personal challenges too – when tics in my legs began to affect my mobility, my initial instinct was to ignore it and struggle on. But thanks to the love, honesty and persistence of my friends and family I was able to take the big step of sitting down and embracing my life on wheels.
My increasingly intense tics have meant I need more help to be safe and independent. Fundamentally though, I haven’t been alone because I have the right support from Social Services and Access to Work. This has meant that, despite significant physical changes, I’ve been able to thrive, work and live independently.
This blog, which started exactly a decade ago, has changed me, and crucially it’s helped me to manage as my body and circumstances have changed. From the outside it might like I’ve lost a lot in the last ten years – my mobility, independence and energy levels are radically different – but I’ve also gained an incredible amount.
A decade of Touretteshero has given me:
– The language and confidence to explain my experiences
– The insight to ask for help when I need it (most of the time)
– The opportunity to make art I believe in and to share it with people all over the world
– Many, many, many friendships and a great deal of laughter
At the same time though, ten years of austerity has given me a lot of rage, and a sense of great urgency. Whatever the 20s have in store for us, it certainly looks as though we’re in for a bumpy ride!
But confidence, creativity, understanding and acceptance are powerful tools for fighting fear and preventing it cluttering our minds and our society.
One the 1st January 2010 I ended my first ever blog post by saying ‘from this point on, Tourettes is not my problem but my power. From now on I’m Touretteshero.’
I’m going to end this post, the last of the decade, by updating this statement for the years ahead:
‘Together we have the power to shape a more socially just world. I’m not the only Touretteshero – we are many’.