Twelve Messages In Twelve Months

In just a handful of hours 2016 will give way to 2017. It’s tricky to know how to write about a year that’s been full of upheaval the world over, and like many others I’m extremely apprehensive about what the year ahead holds for us all.

I’m going to leave Trump, Brexit and celebrity deaths to other writers and instead reflect on the moments that have made me feel hopeful in 2016. I’m also going to share something I learnt each month that might be useful as we face an uncertain future.

January – Be Ready to Find out More

At the start of the year I went to Bristol to give a talk. I didn’t know it at the time but in the audience there was a filmmaker from a company called Rubber Republic. The following day we had an email from them about the possibility of us being involved in a project for eBay. I almost turned it down straightaway because it didn’t sound like the sort of venture I’d be into. But thankfully Leftwing Idiot suggested we ask for a bit more information, and the next email that popped into my inbox spelt out a really exciting proposition.

What we were being offered, just months before our nine-week UK tour of Backstage in Biscuit Land, was a remarkable customised van. All we had to do in return be in a video that would help inspire people to adapt their own vehicles. Magically, just a few weeks later we set off on tour in the incredible Tourettesmobile.

Without our new wheels the tour would’ve been infinitely more difficult and exhausting. But because of my assumptions at the start we almost missed out on this opportunity, and this reminded me that being ready to find out more, and embrace the unexpected, can lead to incredible outcomes.

February – Organise and Trust In Each Other

In February Fat Sister was one of thousands of Junior Doctors striking about a new contract that is both unsafe and unfair. As the Government forced through their damaging and un-resourced plan for the NHS the dispute continued and included a historic all out strike. It wasn’t just junior doctors who were involved in the actions: nurses, health care assistants and consultants all took part as well. The contract makes me angry, and what it represents for our NHS makes me intensely sad, but witnessing the strength of the doctors’ determination, and the solidarity that people across the country showed them, makes me optimistic. It’s crucial that we continue to organise against decisions we believe are wrong, to support those battling to bring down barriers, and to do everything we can to protect the structures that act as a safety net within our society.

March – The Right Decisions Aren’t Always Easy

In March I made a huge change in my life. It made me feel scared, sad, and excited all at once. My decision to leave Oasis Play where I’d worked for the last six years had been made a long time before I actually went, and it was a decision made largely out of necessity.

As Touretteshero grows it needs more and more time, and it was becoming increasingly difficult for me to juggle my jobs at Oasis with the organisation I’d created with Leftwing Idiot. So in March we left Oasis and set off to tour our show Backstage In Biscuit Land across the UK and US.

There’s no doubt that this was the right decision, but that didn’t mean it wasn’t really tough. I miss my work at Oasis, the children and young people there, and the community that I’ve been a part of. But in taking that step I’ve made new connections, developed my knowledge and skills in ways I could never have imagined, and as a result, there are opportunities ahead that are only possible because we made this leap of faith.

April – If Something Feels Wrong Say So

While on tour in April, during a show at a comedy festival, I had a difficult experience which left me feeling more uncomfortable than I’d felt in years (and that takes a lot). Comic after comic drew attention to my tics, and for me at least the laughter sat in the wrong place – it sat on me. I woke up the following morning feeling crushed by the experience. Unsure of how to manage what had happened I wrote a post about it. Several of the comics who’d been involved read my post and got in touch and I had some really interesting conversations as a result. I’m glad I found a way to talk about what had happened and how it had made me feel. At a time of increasing division it’s more important than ever for different people’s perspectives to be visible, and for challenging conversations to be held openly and honestly.

May – Pursue Justice

In May one family’s three-year battle for justice led to the start of a long overdue inquest. My friend Amy, who had Tourettes, was just fourteen when she died in the care of a Priory-run mental health unit miles from her home. A few weeks later the jury concluded that the Priory Hospital contributed to her death by neglect.

Staff had missed many opportunities to save Amy, not just immediately after she tried to kill herself but also in the months, weeks and days before. Amy told staff on the day she died that she wished to end her life, but no action was taken. Tania, Amy’s mum, told Channel Four News, “Amy wanted to live, she asked for support, she never got that support.” Amy was a vibrant, charismatic but vulnerable fourteen-year-old, full of energy and potential. She should’ve been supported and nurtured, but like far too many young people, that’s not the treatment she got.

Amy’s was not the only family desperately fighting for answers and justice this year. In June Southern Health finally accepted responsibility for the death of Connor Sparrowhawk, known to his friends as Laughing Boy, after a three-year campaign by his family. And in April, justice for the 96 people who died in the 1989 Hillsborough Disaster was finally achieved when an inquest jury concluded they had been unlawfully killed. But too many families are still fighting for answers – the family of Dalian Atkinson who was tasered to death in August this year, the families of Smiley Culture, Mark Duggan and Azelle Rodeny who all died during or shortly after arrest by the police. Or the families of the fourteen teenagers who died as a result of the New Cross Fire in 1981.

Pursuing justice and getting answers should be crucial to us all. Only if fatal incidents are properly understood can action be taken to prevent them happening again in the future. We live in a society where far too many people are denied justice and where structural discrimination leads to deadly consequences. Inquest was critical in supporting Amy’s family.

June – Find Practical Solutions

While on tour in June three connectors in my wheelchair’s backrest snapped. Far from home and with my mobility dependant on the chair I had to find a practical solution. This time it came in the form of drinking straws, with which my backrest was stitched together for the rest of the trip.

This isn’t the only time offbeat solutions like this have come to my rescue. A wide variety of other inventions and interventions have kept me safe and independent for another year. In my experience being ready to adapt and ask for help is crucial to finding a way through turbulent or unpredictable times.

July – Reject Shame and Practice Pride

In July I wrote about the experience of having my care package reviewed. I described how the visiting social worker had inadvertently used language that made me feel full of shame. It was only when I reflected on this later that I realised how the words she’d used had impacted on me and made me have the feelings of guilt and being a burden that are all too present in how disability is discussed in our society.

When these feelings were stirring in me I remembered the words of Crip activist Stella Young who wrote: “The journey towards disability pride is long, and hard, and you have to practice every single day… The self-doubt and the internalised ableism will always creep back in at odd moments… but you’ll get quicker at banishing those thoughts.”

Practice pride in yourself and nurture it in others, and in 2017 when the language of hate and division is likely to intensify, be ready to challenge words that feed shame, and instead build up a vocabulary that promotes respect and understanding.

August – Nurture Inclusivity

In August I failed to board a lot of buses. In fact I kept a record of my journeys and found that only one in five was straightforward. I wrote to the seven Supreme Court judges who are still considering Doug Paulley’s historic case against his local bus company. I’ve got everything crossed that next year will bring a decision on his case that’ll help reduce barriers to our public transport system, making it accessible in practice as well as in theory.

A text from my friend Laura also brought a moment of intense hope. Laura told me about a bedtime conversation with her daughter Ruby that showed that, like many children, she was instinctively using a social model of disability: not asking how we can fix people but instead how we can fix environments so that everyone can participate.

September – Create Spaces That Celebrate and Sustain

In September, at the Royal Festival Hall, I took part in the Unlimited Festival. This biennial celebration of disability art had a truly international feel, with representatives from all over the world coming together to enjoy disabled-led work.

Also in September Tate Modern’s new collaborative project Tate Exchange was launched. A diverse range of associate organisations will be curating this new space, and we’re one of them. In March we’ll be taking over the fifth floor of the Switch House for Adventures in Biscuit Land, a three-day inclusive children’s event booking information here.

Later in the autumn I was reminded how essential it is to create spaces that strengthen the resilience and pride of communities who experience barriers. I loved the healing conversation I had with Liz Carr at Heart N Soul’s amazing Chat Up event. Having positive experiences and memories to draw on when life is tough is protective and with more hard times on the horizon, it’s important that we nurture confidence in ourselves and in those around us, and find ways to support people we may not know.

October – Don’t Leave Change To Politicians

Six years ago Leftwing Idiot and I started what we both thought was a small online project. Little did we know how big it would become or that there would be a book, events, a stage show, a biscuity birthday bash and countless opportunities to change the world, one tic at a time.

We started Touretteshero because the misunderstandings people have about Tourettes were impacting negatively on my life. In the last six years I’ve learnt that if something isn’t working I have the capacity to change it, and that’s not because I have any special qualities or superpowers but because we all have the capacity to create change. Social justice is way too important to leave to politicians or even to people wearing capes – it’s something we all have a responsibility to contribute to.

November – Anticipate What Others Might Need

In November I wrote an open letter to teachers. It was inspired by hearing about the difficulties some children with Tourettes face at school. A friend who’s a teacher called me to say this was perfect timing because a child in her class was struggling with his tics. This post will remain on the Touretteshero website ready for any teacher who needs it. There’s also a post for parents here, for people with Tourettes who’ve just had a difficult experience in a public space here, for people about to tell a Tourettes joke here, for people whose tics are increasing here, and an A to Z of essential info for disabled people here. In the coming year the more we can all look for ways to make sure information and support is there when people need it, the better.

December – Be Open To Each Other

A few weeks ago an encounter in my doctor’s waiting room reminded me how open children can be to difference and to each other. As a group of children inspired to become cats by my tics meowed playfully at my feet I felt hopeful for the world.

In 2017 I’ll try and be more like the little girl in the waiting room – embrace what’s around me, share what I have and make time for others.

Wherever you are and however you’re planning to mark the start of the New Year, I wish you a happy and peaceful 2017.

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