“2017, Year of the Oscillating Grin”

I’m quite surprised to find myself at the last day of 2017. There are a million clichés about time passing quickly, and I’m loath to mention any of them, but this year really does feel as if it’s gone by extra-fast. So do my tics who are busy re-working several of the most familiar platitudes:

“Faster than the speed of a drunk hamster”
“A stitch in time saves eighty-five Star Trek enthusiasts from a cave of dreams.”
“Gone in the blink of a biscuit.”

For me it’s been a year of contradictions and contrasts. There have been moments of amazement, joy and achievement but also of frustration, sorrow and sleeplessness. So for this round-up post I’m going to reflect on both the great bits of 2017 and the challenges.

The year got off to a frustrating start in January when a bus driver refused to let me board his bus on New Year’s Eve last year, even though there was plenty of room for me as well as for the child in a buggy who was already on board. But just 18 days into January I sat in bed in a flat above Birmingham Repertory Theatre and watched with joy as, live-streamed from the Supreme Court, they ruled in favour of wheelchair-user Doug Paulley in his case against his local bus company. This ruling gave desperately-needed clarity around access to the wheelchair space on buses.

In February we toured Backstage In Biscuit Land to Vancouver, a beautiful, welcoming city. But it was a journey much closer to home that made the biggest mark on me when, at the end of the month, I experienced a barrage of abuse on a London bus. This was by far the most intense and distressing Disability Hate episode that has been directed at me to date. Sadly, with levels of reported hate crime rising steeply, I won’t be alone in having experienced a hate crime this year. The police response to this incident was positive although the person who attacked me was not held to account. This experience was deeply unpleasant and it got me thinking about the importance of acknowledging the increasing divisiveness of our society, and of taking action to address this wherever we can. I talked about some of this at the No Boundaries conference in Hull a few weeks later. The most important thing this experience taught me was how easy it can be to accept a rubbish situation, rather than making adjustments to eliminate what makes it rubbish. This felt like an essential lesson in a year that saw the arrival of President Trump and the re-election of a destructive Conservative government here.

In March we packed in two once-in-a-lifetime experiences, performing at the Sydney Opera House and taking over the fifth floor of Tate Modern’s new building for three days of intergenerational, biscuity adventure. I don’t think I’ll ever forget leading a huge group of children and adults in a rousing rendition of “Oh bears why are you so non-conformist when you poo?” as we looked out over London from Tate’s brand new building.

On a personal level this has been a year of pain. That may sound bad, and there have definitely been moments when the chronic pain in my back and hips has felt like an overwhelming challenge. But it’s also helped me slow down, prioritise and ask for help. The empathy and support of my friends and family have enabled me to find a way through the bleaker moments. The Touretteshero team has grown too, with Innes and Will joining Leftwing Idiot and me, and this has meant I can pace myself, safe in the knowledge that Touretteshero is continuing full steam ahead.

May was a life-changing month for my favourite royal family, King Russell and Fat Sister, when Fat Sister turned a bump into a baby. I quickly fell head over heels in love with my new niece. I only feel a tiny bit envious each time she surpasses me developmentally, doing things like holding a drink without getting wet, sitting on the floor without head-butting the carpet, or standing for “longer than the blink of a hedgehog”. I’m hopeful that in 2018 I’ll get to hear her talking. There’s already a lot of curiosity about what her first word will be – I’ve got everything crossed for “Biscuit”.

June saw a chance for change as the hastily called general election rolled in. While, sadly, the outcome was continued Tory rule, there was nevertheless some light because of Labour fielding a new leader who for me and many others felt like the Party’s first credible candidate in our lifetime. Just a week after the election the horrific fire at Grenfell Tower claimed the lives of at least 71 people, and made many more homeless. This tragic event laid bare huge inequality around housing, and the desperate impact of cuts to local authority funding. As the inquiry into the Grenfell fire begins some of the circumstances feel, sadly, all too familiar to me. In 2009, with many other local people, I watched in helpless horror as flames ravaged Lakanal House, a block of flats just across the road from the castle. Six people, three of whom I knew, lost their lives. The fire in Grenfell was on an unimaginably horrific scale and it was devastating to find out that the recommendations made at the inquest into the Lakanal fire had not been acted on – instead, they had been sat on by Government minsters for years. We must all ensure that in 2018 the Grenfell families get justice and that lessons are acted on so that everyone has a safe home and that needless loss of life is prevented.

For me the sound track to this year has been the repetitive, broken prose of Samuel Beckett’s ‘Not I’, I first started learning this text on 1st January 2016 and it was a year and a half later that I debuted the frantic monologue at the Edinburgh Fringe. Our week at the Festival in August was incredibly intense. Amazingly, the show had sold out before we arrived, but I felt much more pressure than I’d ever done before. Our neurodiverse production of the play was well received and I can’t wait to share it with audiences in 2018 – you can have this hour-long theatrical experience at Battersea Arts Centre in March 2018 and hopefully we’ll tour it across the UK later in the year.

In September sleeping became a very big problem and I was very often kept awake by pain. I found that writing was a really useful way of processing and sharing the challenge of sleeplessness, and I received a great deal of support in return.

October and November saw two great disability arts events in London – or maybe more accurately six. First, Battersea Arts Centre, Oasis Play and South London Gallery celebrated the culmination of their collaborative Making Routes project with three days of celebration across all the venues. Disabled and non-disabled artists worked with disabled and non-disabled children to create art and bring these diverse spaces to life in new ways. Touretteshero got in on the action for the second event, Brewing In The Basement, a two-day and one night take-over of the Barbican’s basement.

December has been a month of rest and reflection. I’m in the middle of my first proper break in many years and it’s felt lovely to take some time to think about and recover from this year. It’s been packed with amazing moments, laughter and friendship, but punctuated by personal, national and international challenges.

2018 looks set to be another busy year for Touretteshero, and excitingly it’s shaping up to be one that focuses on children and young people. We already have collaborations planned with The Southbank Centre, National Theatre of Scotland and Battersea Arts Centre.

At a time of increasing division and inequality, focussing on young people and sharing with them ideas and tools that might help them shape a more equal future feels urgent and essential. Look out for ways to get involved in the year ahead but for now, however you’re planning to spend tonight, I wish you a very Happy New Year.

My tics seem desperate to have the last word and as I type I’m shouting surreal summaries of 2017. This feels like an appropriate way to end a post about a relentless, chaotic and thought-provoking year:

“2017, year of the androgynous headstand”
“2017, year of the box-fresh bean curd”
“2017, year of the unorthodox Allen key”
“2017, year of the expressive ram.”
“2017, year of the aggravated grape.”
“2017, year of rhyme, reason and a rotary chicken.

One Response to “2017, Year of the Oscillating Grin”

  1. barbara.renel says:

    Love and big hugs. And a happy new year xxx

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