At midnight tonight the fifth year of Touretteshero will draw to a close. Back at the very start of 2015, when we launched our birthday survey, I promised that during the year we’d celebrate our anniversary. But it’s been such a busy year that we never quite managed to fit our birthday party in. Don’t worry though – plans are under way for an event in the New Year.
Back in 2010 we set out to ‘change the world one tic at a time’, but I would never have guessed that this would lead to me actually going all over the world to do it this year. But that’s what happened – it’s been a year of travelling, collaborating, performing, talking, listening and laughing. So rather than rounding things up month by month I thought I’d map it out place by place.
2) It was cold in Skye but that was nothing compared with Canada in February. I travelled to Toronto to speak at the amazing Republic of Inclusion, part of the This is Progress festival. It felt exciting to be part of a global conversation about the accessibility of theatre. It was also lovely to catch up with our friends at the Tourette Syndrome Foundation of Canada.
3) In April we found ourselves in anther chilly location – Tromsø in Norway. Here we performed Backstage In Biscuit Land (BIBL), climbed a mountain, and I acquired a Norwegian tic, “Pinnsvin” or (in English), “hedgehog”.
4) On 7th of May the nation went to the polls. On election night we were performing BIBL in Brighton. I was all geared up to vote to change the Government and I’d been writing regularly about the damage five years of Tory-led government had done to vital services, hard-won equalities. So when I woke up the following morning to the news that the Conservatives would be in power for the next five years I felt desperate and desolate, and I know I wasn’t alone. I was stunned because fundamentally I cling to the belief that most people are fair and decent. The agenda of cuts that had been pursued so savagely in the previous five years had caused such immense suffering that I couldn’t believe anyone (except the handful of people who’d profited directly) would want it to continue. To me it felt as if half the country was crying out in agony, and as if the other half couldn’t see or hear them. Given this outcome I wouldn’t have wanted to spend that sad evening anywhere else but on stage in Brighton telling 230 people about the crucial role the NHS, social services and Access to Work play in keeping me safe, independent, and working.
5) Outside London, Liverpool’s the city where we’ve most often been asked to perform BIBL. We went back for the third time in April, and while we were there Chopin dressed up like a Dolphin, much to the excitement of my tics.
6) Though I went to Art College and have a degree, it never really felt like university. In contrast, St John’s College in Cambridge, which I visited earlier this year felt like Hogwarts! I was there to give their annual disability lecture and I chose to talk about laughter – more specifically about the power of laugher to create social change – you can watch my talk here. The talk was organised by Cambridge’s Disability Resource Centre, which provides support for disabled students. Earlier this month the Government announced devastating cuts to crucial funding for disabled students which is catastrophic news for anyone who cares about equality and education.
7) In July artists Mat Fraser and Julie Atlas Muz curated Cripfest in New York to celebrate twenty-five years of the Americans With Disabilities Act. Sadly I wasn’t able to make it in person but I was there in spirit with a video about relaxed performance.
8) I went to Milton Keynes in April to say a final goodbye to one of the most important people in my life, my gran. This was a sad trip but I was very glad to have had the opportunity to be with her on the day she died.
9) In Cumbria, Will and I did some important work raising awareness of Tourettes amongst sheep. We also climbed a huge hill in glorious sunshine, paddled in an icy stream, and had a chance to talk about the changes coming up in both our lives.
10) We took Backstage In Biscuit Land, and its message that making art inclusive makes it better, to Sweden. Chopin and I were blown away to see our faces on a huge billboard outside the theatre when we arrived.
12) Glastonbury 2015 was glorious! Captain Hotknives and I did six shows. We hung out with amazing people and thanks to the work of the access team and Attitude is Everything, getting around was surprisingly straightforward.
13) Captain Hotknives, Will and I were together again the week after Glastonbury, this time in Cardiff for the Unity Festival. Unity was incredible, the atmosphere inclusive, creative and supportive – everything I wish was echoed in our wider society. Sadly all too often it isn’t, and that same weekend the family of Connor Sparrowhawk (known as Laughing Boy or LB) marked the second anniversary of his death. LB was a young man with autism and epilepsy who died in the bath while in the care of Southern Health. LB’s family fought tirelessly for justice for him, and to safeguard other learning-disabled people. On October 16th the inquest found that his “death was contributed to by neglect”.
Sadly LB’s family weren’t the only bereaved relatives fighting for answers this year. At the start of December, just over three years after the death of my friend Amy in a Priory-run psychiatric unit, a coroner ruled that her inquest should have a jury, the date for which is yet to be set. These outcomes are the result of tireless fighting by grieving families, but surely they shouldn’t need to battle for answers about why their beautiful, vibrant children’s lives were cut short.
And it’s increasingly clear that these are not isolated incidents. Earlier this month a shocking report, prompted by LB’s death, found that Southern Health ‘failed to investigate 1,000 unexpected deaths’ and that only 1% of deaths of learning-disabled people were investigated. Deborah Coles, director of INQUEST, a charity that has supported LB and Amy’s family in their search for answers, said, “This damning report must now prompt a national inquiry.” I couldn’t agree more. As a society we must whole-heartedly reject the idea that the deaths of disabled people are somehow less ‘worthy’ of investigation. The #JusticeForLB campaign continues – find out more here.
14) At the start of the autumn we were in Belfast for Bounce, another excellent disability arts festival and we also enjoyed a brilliant afternoon clambering around on the Giant’s Causeway.
15) I’ve taken part in protests in Parliament Square a number of times this year and I’ve been there in spirit on countless more. The Anti Austerity march in June, the campaign against the end of the Independent Living Fund, the Stop Changes to Access to Work march and the Campaign against new junior doctors’ contract, to name but a few.
16) There’s been a fair bit of change at the castle this year. Zoë and Will, who’ve both supported me consistently for years, moved on to new things this September. I’m still missing them both a great deal even though we see each other often. My new support workers, Rachel and Aytan, have joined the team of lovely people who help make life at home enjoyable, safe and exciting. The lamp-post remains a constant presence, and a source of inspiration and irritation in equal measure. This year he even inspired his own play.
17) As I child I used to travel between London and Blackpool a fair bit. From the train you can see the Roundhouse in Camden and for many years seeing it was a sign that I was nearly home. In March it became the home of our Idea Amplifier. Eight young creatives with Tourettes joined us to collaborate on a film, and on 4th July we launched the brilliant Running Away From The Circus.
18) This October and November was busier than any time I can ever remember. Not only did we get to perform BIBL at the Barbican and Soho theatres but we also took up residence in Television Centre and adapted the show for TV as part of the BBC and Battersea Arts Centre’s Live From Television Centre project. One of the most exciting, challenging and nerve-wracking things I’ve ever done, it’s available to watch in BBC store. I was also back on E4 announcing programmes and got to chat about lamp-posts with Russell Howard too.
19) Sneaking in at the very end of this year was the chance to be involved with a Russian article about Tourettes. You can read it here (in Russian).
20) 2015’s also been an exciting year for the play organisation I work for in Stockwell. I’ve had many brilliant, thought-provoking and funny conversations with the children I work with and had the joy of seeing them continue to grow and flourish.
While 2015 is all mapped out and drawing to a close the opportunities to spread understanding in varied places continue in 2016. Already in the diary is a tour of BIBL in the UK, and we’re heading to the USA with the show in May too. If we’re coming near you do come and join us and say hello.
Travelling to new places is exciting and enjoyable, and for me it’s crucially important, too. Six years ago on this date I was alone in my flat which, though I didn’t know it then, was on the brink of becoming a superhero lair. What I did know was that the way I’d been dealing with Tourettes wasn’t working for me, and that ignoring and hiding my tics was restricting my life. As I prepared for my first Tourettes-related creative experiment I would never have dreamed that I was about to start an adventure that would lead me to all the amazing places I’ve described.
But I was able to start down this road only because the ideas and actions of others sparked a change in my thinking. One of the reasons I feel driven to share my ideas and experiences is the hope that they help catalyse change in other people as well.
Transforming the world is too important a task for us to leave to politicians. Together we can change things that aren’t working, protect the things that are, and build a more inclusive society.
I wish you a very happy New Year – may yours be filled with shared laughter, friendship and biscuits.
See you in 2016