The final post of any year feels like a big deal. But at the end of such a busy year this one feels particularly significant.
As the third year of Touretteshero comes to a close I feel incredibly proud of what we’ve achieved. To make sure I cover as much of it as possible I’m taking a three-pronged approach – so here’s 2012 in words, numbers and drawings.
The ‘Word of the Year’ has most definitely been “Biscuit” even though the year’s ended less biscuity than it began.
As my most regular tic it’s a word I’ve heard thousands of times every day this year, as have most of my friends. But so too have many other people, as a result of the opportunities I’ve had to speak on the radio and TV and write in the newspapers. I’ve been able to share the surreal humour, creativity and challenges of my tics with more people than ever before (as well as all those biscuits).
The interviews began early on following David Cameron’s thoughtless comment about Tourettes in the Telegraph in January. Regular readers will know I’m used to challenging negative comments about my disability. I do it on buses, on trains and in shops, so challenging the Prime Minister was no different.
Speaking about Tourettes doesn’t feel like a choice for me – it’s something I have to do to increase understanding of the condition and maintain a good quality of life. My favourite interviews this year were on Woman’s Hour, The Today Programme, This Morning and Sunday Night.
But for me, the real high point of the year was undoubtedly the publication of my book Welcome to Biscuit Land. Receiving the first copy through the letterbox at the castle was a truly amazing moment. Sharing this excitement with my friends, family and supporters at the book launch is another outstanding memory.
One of the things I’ve enjoyed most about its publication has been giving it to the people who’ve helped make my story a positive one. Writing in copies for my parents, Leftwing Idiot, his parents, Poppy, Fat Sister, King Russell, Laura and Ruth, felt wonderful. This has been another year in which the love, support and high expectations of my family and friends have kept me going through exciting and difficult moments alike.
I’ve had many brilliant, funny and moving messages in response to the book and the interviews. When people describe turning their increased understanding into positive action I’m always filled with optimism. Following one recent radio interview I got a message from a mother whose son has Tourettes. She said:
‘Well, I missed the interview but my son’s substitute teacher heard it and took him aside to tell him how interesting she found it and that it made her think about him. This teacher has been his nemesis for a good while but I think he has changed his mind about her now.’
I was glad this teacher had heard me talking, that it had made her think differently about a child with whom she worked, and that she’d been moved to tell him so.
For me, most of the lows in 2012 are inextricably linked to the policies of the current government. This is a year that’s been marked by what’s been lost. On a national scale we’ve lost the Disability Living Allowance, a publicly-owned NHS, and the Independent Living Fund. And on a more local level, countless organisations, services and schemes have disappeared as well. I’ve been heartened by the energy and creativity of the campaigns against these cuts, but sad and angry that they’ve been necessary in the first place.
Aside from the government, the other main low scorers in 2012 have been my tonsils. They’ve made me ill repeatedly and every time I get tonsillitis my ‘ticcing fits’ get more frequent which makes meeting my support needs even more demanding. But I’m optimistic that my troublesome tonsils will be less of a problem in 2013 as they’re coming out on Thursday.
Wheelchairs have enabled me to have some of my most memorable experiences this year, particularly my trips to Avebury with Leftwing Idiot and Nez, and to Scotland with Ruth and Claire. The flight to Glasgow must rank as one of the funniest moments of all. My quest to find the right wheels has led to some sad and scary times, but thankfully my current chair’s doing well – so far.
As we approach January, my naughty little automated brother @TicBot has only five fewer Twitter followers than I do. He’s flourished this year and has entertained and infuriated many people with his tweeted tics. I wrote about him in the Guardian earlier this month.
The most important development as the year turns, is a shift in my ‘ticcing fits’ – for the last few months they’ve been happening fewer times a day, and are less intense when they do occur. This gives me a lot of hope for 2013.
1 Book has been written and published
2 Music festivals have given me countless happy memories
3 Is the number of times I’ve (prematurely) announced the end of my biscuit tic
4 Wheelchairs have helped me glide through the year
5 Was the number of Google results for Touretteshero three years ago – now there are 16,300
6 NHS teams have helped keep me safe and well this year
7 Hours was the longest ‘ticcing fit’ of 2012 (and since records began)
8 Bouts of tonsillitis in the last six months have made things tough at times
9 Minutes of surreal joy when I met Captain Hot Knives in a field at Shambala Festival
10 Times I’ve written about things that have made me cry. Thankfully 84 posts are about things that have made me laugh
11 People travelled from London to Devon and back (in one day) for the Biscuit Land book-cover photoshoot
12 More months of blog, 5040 Tics and 187 images inspired by them are now being shared
13th December 2012 will be a day that will always stay with me. This was Amy’s Day, the funeral of fourteen-year-old Amy El-Keria who died in November. Changing the world and increasing understanding of Tourettes has never felt more important.
14 Months since my ‘ticcing fits’ started
15 Items (give or take a few) have played key roles in keeping me safe and independent – they’re in my intervention round up from August
16 Was the number of votes that saw the damaging Welfare Reform Bill pass through the House of Lords. Amongst other appalling aspects of this Act, 500,000 disabled people will lose the vital support they’ve had from Disability Living Allowance
17 The number of posts about my personal nemesis – the lamp-post. Shouting at the lamp-post as I drift off to sleep’s been a regular feature of my first year at the castle
18 Otter mentions in this year’s blog
19 Support workers have helped me though the year
20 Sports were showcased at the London Paralympics. Spread over twelve days the Games dramatically increased the visibility of disabled people in the media. But, for all the celebration, the Games came in a tough year for most disabled people. One of the key sponsors of the event was Atos Healthcare, a company that’s administering the government’s sweeping cuts to the benefits that support sick and disabled people. I wrote in August that since the start of Atos’s contract, 1100 of the disabled people they had declared fit to work had died.
Sadly I fear the biggest legacy of 2012 will be cuts to the support for disabled people rather than the sporting achievements of Paralympians.
Here’s my year summed up in a single image:
My Big Hopes for 2013 are that
• Disabled people continue to challenge the government’s bonkers policies with energy and creativity
• More people find this site, enjoy my tics, deepen their understanding of Tourettes, and join with us to change the world one tic at a time
• I can approach whatever 2013 has in store for me with honesty and a sense of humour
• Touretteshero continues to make a big positive impact, and to help make sure this happens I very much hope we’ll be able to hold another event for children in 2013
2012’s a year in which I learnt:
• To be more open
• To ask for help when I need it
• That ignoring problems never works, but that laughing a lot often does
• And most importantly that if something’s not working, change it
I’ll carry these lessons with me into the New Year and look forward to learning many new things in 2013.
Happy New Year!