Twelve Months Strong

I’ve just re-read the post I wrote on New Year’s Eve exactly a year ago and it reminded me what a decidedly rocky start I’d had to 2014. On Boxing Day last year the muscles in my hands unexpectedly and very suddenly seized up. I’d spent the last day of 2013 at the hospital, and the post I wrote that evening was full of sadness and uncertainty.

I ended by saying:

All I want from 2014 is friendship, creativity and laughter – with those in place I know I can weather any turbulent times.

I feel very fortunate to be able to say that I got everything I wished for and so much more. I’m leaving 2014 with incredible memories, new friends and an enormous sense of pride in what we’ve achieved.

It’s a major undertaking to sum up the last twelve months but I’m going to give it a whirl so please join me for a meandering roll through 2014.

January was dominated by my stiff, dystonic hands, which I took to describing as shadow puppets. Lots of my memories of this time are hazy because of the powerful drugs I was taking. But the feelings of fear and vulnerability I felt remain crystal clear. By January 5th I’d already learnt a load of new skills and been reminded that ‘my friends and family are an incredible, compassionate and adaptable bunch with an unshakable love of inappropriate humour – and me.’ My social services team were brilliantly responsive and I received increased support, including help with showering and getting dressed in the morning – I’d never been cleaner. So many people helped me through this difficult time but, St Zoë, I’ve just re-read this post and it made me cry and smile and appreciate you deeply all over again.

Things improved after I had Botox injections in my arms, and January was also the month I met Nina Conti and Monkey and talked about what freedom looked like to me for the BBC.

“Oh January, I forgive you for being a shit.”

In February while the rest of the world celebrated Valentine’s Day I celebrated Alantine’s. Another less amusing landmark of the month was the day I tipped my wheelchair over and fractured my elbow, which hurt a lot! More positive news was that my book – Welcome to Biscuit Land – was translated and published in German. Sehr gut.

Poppy, I found this conversation from February and it made me laugh again. This is one of many conversations we’ve had this year, some funny, some surreal and some more difficult. I feel fortunate to have had every one of them, probably about as fortunate as you felt at not having an “antelope covered in butter” in your eye.

“I was run over by a juggernaut in February 1992, in my mind.”

My colleague Stuart dropped the ultimate bombshell in March when he told me the geranium my tics had been bullying for the last three years wasn’t a geranium at all – it was a pelargonium!

Oh, Pig Stickers you were so much fun, I’m still finding you sneakily stuck in discreet corners of the castle. March was the month we made this piece pirate radio parody for my friends the 2 Bears.

I loved making this and have all my fingers and toes crossed that in 2015 we’ll get a debut album from ‘MC Boat Licker’.

“You’re not a geranium, you’re a pelican.”

On 12th April over a year of planning and collaboration came together when We Forgot the Lot, a partnership event for children with and without Tourettes took place at Tate Britain. It was an amazing day and to our knowledge it’s the first time people with Tourettes have ever been invited into an art gallery to transform it in this way.

The day after We Forgot The Lot we launched our next big project – the stage show Backstage in Biscuit Land. We started developing BIBL with the support of an Unlimited Research and Development award, and began fundraising on Kickstarter to take the show to the Edinburgh Fringe later in the year.

Also in April the lamp-post got covered in Saharan dust, I wrote to the Pig Fairy, and ‘Biscuit’ trended on Twitter after my first proper stint as a freelance continuity announcer for Channel 4.

Leftwing Idiot, this was a breathtakingly busy time for us and we achieved amazing things of which I know we’re both very proud. But this was also the month when the need to pace ourselves and manage how much we take on became very clear. As we go into another busy year, let’s not forget this lesson. I also won’t forget the moment you sat on a biscuit. Your hard work, vision and energy, in what I know has been a very tough year for you, have been fundamental to what we’ve achieved.

“Lamp-post, you’re dustier than a derelict talcum powder factory.”

I had some beautiful moments alone in my city in May. The Pig Fairy totally excelled herself with Bat Pig and Robin and I decided I no longer needed to celebrate fit-free days because they were becoming less exceptional. Woman’s Hour broadcast this moving piece about Tourettes made by children and families at We Forgot The Lot, and we said Thank you a lot – 197 times to be precise.

Will and I went duvet-cover-shopping and I had a fit in the bed department. Will, this is one of many bizarre and amazing moments we’ve shared this year. Thank you for loads of laughs, some good catches, and your incredibly sensitive and intuitive support.

“How many penguins can you fit under your duvet?”

I got a new wheelchair in June and it made me wheelie happy. The Disabled Student Allowance needed defending from another destructive government cut. The protest resulted in the proposed changes to this vital support being postponed until 2016-17. On a gloriously sunny day in June I joined 50,000 other people on an anti-austerity march taking a peaceful but powerful message to the doors of the Houses of Parliament.

At the end of June Captain Hotknives and I performed at Glastonbury – in fact we performed seven times.

Captain Hotknives, in just two years we’ve gone from a gig outside a one-man tent in a campsite to proper stages with hundreds of people in the audience. Thanks for being the brilliant, generous, quick-witted, funny, penguin lover that you are. I can’t wait for another summer of spontaneous songs, sing-alongs and mischievous games.

“No cats, no cuts, no cutting cats.”

In July we did our first performances of BIBL. We had no idea how audiences would respond or if what we’d created was any good. Thank you to everyone who came to those early scratch shows, your enthusiasm and feedback boosted my confidence and made me hugely excited about what was to come.

Also in July I got new neighbours – Fat Sister and King Russell. What an amazing thing you did – moving home to be closer to me. Your support, love and flexibility have come to my rescue many, many times in the last year. Thank you.

“Don’t worry, they’re not siblings.”

I spent August in Edinburgh getting to know a new city, new support workers and a whole new creative discipline. I saw more theatre in the first week than I’d seen in my life up until then. I climbed Arthur’s Seat, tested my wheelchair’s brakes and my nerves on many of Edinburgh’s hills.

Jess Mabel Jones (AKA Chopin) and our producer Jolie ‘Cat Dressed as a Nun’ Booth, thank you both for joining me in Biscuit Land and for helping me share my perspective on Tourettes and spread the message of inclusivity and accessibility in theatre. Your skill, thoughtfulness and friendship have made this year wonderful and I could never have dreamt we’d achieve so much together. I can’t wait for more in 2015. To Chopin’s mum, Janet – thanks for your good-humoured response to my excessive ticcing about your breasts.

“The bread and butter of August is light.”

I talked a lot about cats in September, much to the delight of toddlers on the buses. The Unlimited Festival at the Southbank Centre was brilliant and I’m thrilled to have been part of such an amazing disability arts festival. My tics responded to the Scottish referendum with the nuanced analysis I’ve come to expect – “Scotland Decides … To Dress Like an Octopus.

“Cats flash mob.”

Frustrating conversations with Access to Work dominated October as I battled to get them to make the agreed payments for my support. I was not alone – countless other disabled people experienced similar difficulties. I sincerely hope things will improve in 2015. But if they don’t, we must work together to ensure that discriminatory policies and bureaucracy don’t further undermine this vital scheme. This was all particularly troubling because in the same month Welfare Reform Minister Lord Freud made the ridiculous and deeply dangerous suggestion that some disabled people are “not worth” the minimum wage. You can read my response here.

I enjoyed autumn and Halloween and the day my support worker Fran got Frangry at a bus driver. Fran, it’s been a year of change for you – new job, new home, amazing new jumper, but your consistent friendship, balanced viewpoint and a shared love of murder mysteries has enriched another year for me.

“Hello October, you’re looking sexy.”

In November we launched a quest to find my best tics, and with 6001 to choose from there wasn’t a shortage of options. The results are in and all is revealed here.

I gave my first keynote speech, at the University of Sheffield and I’m looking forward to doing more talks like this in the coming year. We also filmed our 2014 Christmas video the results of which you can check out below.

“It’s fireworks night in an igloo.”

December got off to a sad start with the death Australian activist Stella Young, who I never met but who taught me a great deal. One of Stella’s last pieces of writing introduced me to a poem (and an idea) I’d not come across before – You Get Proud by Practicing. It’s a poem written by a disabled activist to other disabled people and the final stanza reads:

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

I feel proud of who I am, of Touretteshero, and of what we’ve achieved this year but I’m going to keep practicing. And as an organisation we’ll keep creating and campaigning, too.

“Practice makes cats sexy.”

I’ve mentioned only a tiny fraction of the people and moments that are woven into my memories of 2014. To everyone who’s supported Touretteshero, who’s campaigned against cruel cuts, who’s fought to protect hard-won rights and challenge injustices, who’s fixed me or my chair when we’re broken or who’s made me laugh and think – thank you.

As we enter a new year, with an election finally in sight, I feel hopeful. Now more than ever let’s talk, listen, laugh, question and imagine. Let’s not leave changing the world to politicians or even to superheroes but take the power we all have to create the change we want.

From the uncertainty and sadness of twelve months ago an incredible year emerged. I could never have dreamt it would be as full and interesting as it’s proved to be. I’m leaving 2014 in a much stronger, happier and healthier state than I started it in, but my wish for the year ahead remains almost unchanged.

All I want from 2015 is friendship, creativity and laughter.

And fingers crossed, a new and better Government.

Happy New Year!

One Response to Twelve Months Strong

  1. louiseongumtree says:

    Wow, what a big year Jess. Great to meet you in Edinburgh and see you and your crew at the Fringe. Have a great new year and all the best for 2015. Louise & Narelle.

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