Speak Out!

I’ve just had a ‘ticcing fit’ on a train. Leftwing Idiot held my head and the feeling of my cheek pressed against his palm was reassuring so that despite the fit I could let my eyes take in the countryside whizzed past outside. I’m glad to have had the fit now because it’s dusk and the bright sunlight of the day is slowly seeping away, and with it the view.

We’re coming back to London from Sheffield where I’ve given a talk at a conference on ‘Activism, Ambition, Action…and Austerity? Disabled Young People Speak Out.’ I enjoyed preparing the talk because it gave me the incentive to reflect on the mission and motivation of Touretteshero.

One of the key ideas I covered and encouraged people at the conference to discuss was ‘Acts of anticipation’ by which I mean things that can be created or provided to inspire, support and protect young activists.

While I was having a fit just now it occurred to me that it would be useful to share my talk as a blog post so that it’s available to anyone who’s interested. So, for the rest of this blog I’m handing over to myself. Warning: this talk is a lot less biscuity than the live version, so please feel free to add your own as needed.

Hello I’m Touretteshero. I’m a writer, artist and part time superhero. I also have Tourettes Syndrome – a neurological condition that means I make involuntary noises and movements called tics.

This is the first time I’ve given a keynote speech. When I was thinking about what I wanted to discuss I felt a bit overwhelmed and unsure of where to start.

This isn’t an entirely unfamiliar feeling for me. Earlier this year I started working on a show to take to the Edinburgh Fringe Festival. I’d never done anything like that before either, but I was introduced to an idea called “Open Space” which I found incredibly useful. It’s a way of running events in which the participants create and manage their own agenda in response to a central question or theme. Don’t worry, I’m not going to do this now, I’m just mentioning it because it helped inform my approach to this talk.

I wrote down on a set of cards all the key ideas I wanted to cover, the questions I wanted to ask, and the experiences I wanted to share. These’ve formed the basis of my presentation. I’ll develop each idea with explanations, examples (and biscuits), but these cards are at the core of the talk.

Touretteshero’s an organisation (and a superhero persona) and it’s grown and evolved in a way I could never have imagined.

I co-founded Touretteshero in 2010. As an organisation we increase awareness of Tourettes by sharing its creativity and humour with as wide an audience as possible, and by campaigning for a more inclusive society.

We do this:

• Online, through our website and social media
• By inviting artists to use my tics as a springboard for their own creativity
• Through creative encounters with artists, musicians, scientists, academics and partner organisations
• By writing and speaking out about the impact of political ideologies and policies
• By devising and delivering events for children with and without Tourettes

Touretteshero’s for everyone and our mission is to, “Change the world one tic at a time.”

We do it:

• To reclaim the laughter associated with Tourettes
• To challenge the myths, stereotypes and assumptions about the condition and about disability more generally
• Because Tourettes isn’t a rare condition – it’s estimated to affect 300,000 people in the UK alone
• Because I understand the tangible difference that increased awareness can make in day-to-day life
• To reduce the fear around disability and make everyone feel more comfortable talking about it
• Because the policies of the current Government are eroding hard-won equalities.

It’s crucial that the voices of disabled people are heard, to increase awareness of the impact of political decisions, and counteract the rhetoric that’s used in relation to disability – scrounger, lazy, fraud

• Because disability isn’t a niche issue. Almost one fifth of the population identifies as being disabled, and anyone with a body or a mind can become disabled at any point in their lives. If you’ve thought about what this may mean beforehand, it can make it easier to manage changing and unpredictable circumstances

It’s because:

• My tics are my power – they enable me to do things neuro-typical people can’t do, like collide ideas together and create new and funny concepts. Without my unusual neurology, the world wouldn’t have the joy of:

“Disco penguins dancing in your dreams.”
“Totally adjustable legs.”
or the
“Hans Solo Centre for Masturbation Excellence.”

• The Touretteshero persona gives me the freedom and confidence to speak in public in a way that I might not otherwise have found
• Superheroes appeal to children, young people and adults alike
• And I get to wear a Lycra wrestling mask with wings!

I’m far from alone in finding my voice behind a mask.

Thomas Nail, writing on the politics of the mask, identified the use of masks as a global trend within radical Left movements – The Zapatistas, the Global Justice Movement, Occupy and Anonymous. He writes, ‘This is no coincidence. There is a historical and political significance to this phenomenon. It is part of a new set of political strategies that rejects political representation and identity in favour of direct democracy and equality.’

The Mexico-based Zapatistas wear black balaclavas. They describe themselves as, “The voice that arms itself to be heard. The face that hides itself to be seen.” Naomi Klein writing on this says, ‘By arming and masking themselves, the Zapatistas explain, they weren’t joining some Star Trek-like Borg universe of people without identities fighting in common cause: they were forcing the world to stop ignoring their plight, to see their long neglected faces.’

The idea of hiding your face to become more visible is one I relate to.

I co-founded Touretteshero with Leftwing Idiot. Touretteshero only happened because of a conversation we had that radically changed the way I viewed my condition.

The conversation boils down to a single sentence: Leftwing Idiot described Tourettes as, ‘A crazy language-generating machine’ and he told me not doing something creative with my it would be wasteful. This idea took root and through it I came to understand my tics as my power and not my problem.

This is also how I know that what we say to each other matters. My life changed with a single sentence. Language can clearly be immensely positive but it can also be used to oppress, undermine and discourage. Every conversation you have has the potential to create change.

Touretteshero might’ve been inspired by single sentence, but many, many experiences and observations helped inform and shape it. One such moment happened at a conference for people with Tourettes years earlier when Leftwing Idiot and I met an adult with Tourettes. Though his tics were mild and barely noticeable, the cumulative effect of the negative reactions he’d experienced growing up seemed to have severely impacted on his confidence. He’d learnt to expect that other people would respond negatively to him, and this expectation seemed to be restricting his life in many ways.

I believe that damage to confidence is always harder to undo than it is to prevent. At the heart of Touretteshero is the idea that strengthening the confidence and resilience of disabled children has the potential to create significant social change.

Confident children = Confident adults = Undiminished expectations = More inclusive communities

Having a broad view of what an act of resistance can be feels particularly important at a time when many disabled people are under pressure from policies that restrict independence, choice, opportunity and equality.

I’m going to describe four ways in which we work that at first glance might not be understood to be acts of opposition. I’ll explain why I believe that these activities are just as valuable as the more direct campaigning work we do.

1) Bringing People Together

While the ideas and actions of individuals matter and are important in sparking and sustaining social change, joining people together is also potentially powerful. Most of the well established rights and principles within our society today have been the consequence of groups of people working together – the Suffragettes, Anti-Apartheid, the Trade Union and Civil Rights movements are notable examples. And it’s more than just a case of strength in numbers. Some of the key factors needed to turn ideas successfully into actions can’t come into play if people are isolated. Bringing people together promotes discussion, deepens understanding, triggers new ideas and helps challenge existing ones.

From the outset, connecting with, talking to, and reflecting on ideas with a diverse range of people has been part of Touretteshero’s mission – not educating people, or just helping them, but collaborating with them and sharing a creative process.

It’s easy for organisations to end up talking to the same people, re-treading old ground or being protective about what they do and the way they work. This is particularly understandable in tough economic and political times, but however instinctive this reaction can be I don’t think looking inwards is the answer.

The challenge for us all is to look out and be open to new connections and collaborations. This in itself is an act of resistance.

2) Laughter as a Catalyst for Change

Tourettes can be very funny. When we started Touretteshero this felt like a risky thing to say. We had no idea how people with and without Tourettes were going to respond to our invitation to share the humour of the condition.

Of course Tourettes isn’t amusing in itself, but my tics are often surreal and funny in a way that the conscious part of me can only dream of being!

Lots of the situations I find myself in are also very funny, like becoming an involuntary sat nav when my friends are playing Mario Kart, or having to explain to airport security that there isn’t actually a springer spaniel or a bomb in my bag.

The difference between laughing at someone and laughing with them is a very well understood concept, though some people describe the line between the two as a blurred one. Personally I don’t experience it in that way at all and I can’t think of a single occasion when I wasn’t completely sure whether someone was laughing at me, or enjoying the humour of a situation with me.

But fear of this line, of causing offence, of being ridiculed or of trivialising an issue can put people off utilising one of the most powerful ways to connect and engage with other people.

Reclaiming the laughter surrounding difference and choosing when and how to share it with other people is an act of resistance and a potential catalyst for change.

3) Acts of Anticipation

By this I mean something that’s created or provided in anticipation of a future need so that it’s there to protect, inform or assist someone when they need it.

A few weeks ago I went to Disobedient Objects at the Victoria and Albert Museum in London. This exhibition explores the powerful role of physical objects in movements for social change. It brings together items born out of activism and collective creativity.

Amongst the objects there was a collection of ‘bust cards’. These were produced by lawyers allied to the gay liberation movement of the 1960s to inform people at risk of arrest or harassment by the police of their rights.

You can read an example of how we use this concept within Touretteshero here.

Another example of an act of anticipation is this flow chart, inspired by the poor efforts of a few well-known comedians.

4) Positive Memories as Protection

From the outset Touretteshero’s put on inclusive events for children and young people with and without Tourettes. These events focus on playfulness, creativity and the power of the imagination. We often use a narrative structure that invites participants to take a lead role in overcoming a challenge.

For example, late in 2010 the world was threatened by a deadly ‘dull-wave’. Children from across the country were invited to come and create their own superhero characters and use their imaginations to help save the world from the impending gloom.

Months after this event I heard from a mum, whose son has Tourettes, had been there. She said she wanted to tell me about a conversation they’d just had. He’d been due to go on a school residential holiday but kept changing his mind about whether he wanted to go or not. She said he’d come downstairs and asked what she thought Touretteshero would do. She asked him what the signs of the dull wave were. A little later he came through and asked if they could go and get him some new pyjamas for the trip.

As this demonstrates, when you introduce children to important themes it doesn’t need to be done explicitly to have an impact.

Our most recent event – We Forgot The Lot! – was a collaboration with Tate Galleries. Children from all over the country were invited to take over and transform Tate Britain. The idea underpinning the event was that you can make changes to your surroundings to meet your needs.

We focus on events because they help build confidence and resilience, and because creating positive memories means children have positive experiences to draw on when things feel tough.

Programmes that aim to build community resilience in this way are not a new concept. In the 1960s, the Black Panthers provided community education, health initiatives, and free breakfasts for children, all designed to build up and sustain the ‘capacity to resist’. Howard Caygill in ‘Philosophy and the Black Panthers’ describes how this greatly alarmed J. Edgar Hoover, then head of the FBI, who saw these initiatives as the greatest ‘long-term threat’ to the internal security of the USA.

As I mentioned earlier, it’s always easy to recall difficult experiences. Recognising our successes is protective and is in my view as much an act of dissent as speaking out.

I propose we engage in some mass inner-activism right now. I’d like you to take a minute to think of a time when you’ve changed something that wasn’t working for you or shared an idea that made someone else excited. I’m not going to ask you to read these out, but there’s a sticker in your pack to write it on if you’d like to. When you’ve done it, stick it somewhere handy so you know it’s there when you need it.

I used to think changing people’s attitudes was a long and daunting process. Touretteshero’s taught me that it can often be very quick and can start with a single conversation. The following twitter exchange illustrates this:

@Abi_Macc: On train with genuine Tourettes person in same carriage. Everyone around nobly studious in their scrutiny of on-board reading material.

@Abi_Macc: Have solemnly promised not to swear on Twitter so here’s the edited highlights: ‘Biscuit’, ‘I’m a baby’, ‘Donkey’. What an affliction.

@touretteshero: It’s also a gift. Check out my #dailyoutburst for more.

@Abi_Macc: Thanks I will check it out! Not sure if I was quoting you (virgin train to manc). If I was hope no offence caused or taken.

@touretteshero: None at all. See what happens when the tics come to life http://vimeo.com/17076632

@Abi_Macc: This is amazing. Not affliction, creativity – do you mind if we live remix the vimeo into one-day installation at #playspace on identity?

There’s a lot to fight, to be angry about and to condemn, but campaigning doesn’t always have to be a battle – it can be joyful, persuasive, discursive and silly.

When preparing this talk I thought about what ideas and opportunities I wanted to share with young disabled people, activists and campaigners. The four that felt most important were:

1) The Realm of the Imagination
It can be easy to overlook the realm of the imagination, but don’t underestimate the potential of this space to unlock new ways of thinking and connecting with other people.

2) Fostering Unpredictable Outcomes
Some of the most exciting and interesting things that have happened with Touretteshero were unplanned. Being open to the unexpected and not having fixed ideas about what will happen can lead to incredible outcomes and opportunities.

3) Language Matters
How you talk about yourself and your ideas matters. Language can help guide people to different ways of thinking. Don’t feel that you have to settle for the descriptions and definitions other people use – think reflectively about language and question how you use it.

4) Reducing fear
Fear creates barriers and there’s often a lot of fear surrounding disability: fear of difference, fear of saying the wrong thing, fear of being hurt by other people. Don’t let fear get in the way, talk to people, challenge assumptions, and be ready to overcome your own fears.

Whatever your personal experience, if something isn’t working for you, work to change it. The key things that have helped me on this journey are:

• Communicating Outwards
People make assumptions all the time about what being disabled means: challenging these and encouraging people to see things from new perspectives is central to creating more inclusive communities. This can only happen if we communicate our experiences openly and are alert to our own prejudices and assumptions.

• Giving Permissions
I’ve found giving permissions really useful, whether to other people – to laugh or ask questions – or to myself – to be visible or take a risk.

• Being Open To New Discourse
It can be difficult to listen to ideas that don’t match your own, or to seek out and engage with unfamiliar thinking. But being open to new discourse is crucial for generating and reflecting on your own views.

• #Solidarity
Social media is increasingly being used by disabled campaigners in really interesting ways.

For example in 2011 The Broken of Britain initiated Project Valentine’s Day which saw countless disabled people explain in 140 character tweets why the Disability Living Allowance was vital to their lives. Timed to coincide with the end of the Government’s consultation on DLA, #ProjV created a simple and quick way for disabled people across the UK to contribute to the resistance.

Another interesting example is artist and activist Liz Crow’s 2013 work. In Actual Fact is a web-based practical resource of actual facts that combat the rhetoric of governments and press. Each fact is short, memorable and instantly tweetable, providing carefully sourced, bite-sized information to call on when answering back.

From my experience, social media platforms and blogs are a really useful way of finding out about other campaigns, making links with other campaigners in solidarity.


Disabled people are being hit hard by round after round of cuts. Equalities are being dismantled and Government policies and media agendas seem purposely designed to make us feel overwhelmed and powerless.

The main thing I’ve learnt in the last five years of running Touretteshero is that if something isn’t working I have the capacity to change it. And this isn’t because I have any special qualities, it’s because we all have the power to create change. Realising this and acting on it is a significant form of resistance whatever you as an individual may be facing.

Subcomandante Marcos of the Zapatistas in Mexico wrote that resistance takes place, “Any time any man or woman rebels to the point of tearing off the clothes resignation has woven for them and cynicism has dyed grey.”

I hope I’ve shown that campaigning doesn’t have to be colourless. Whatever barriers you want to bring down, it’s also worth thinking about what you want to create, develop and protect.

Whatever change you want to bring about, be ready to talk, listen, laugh, question and imagine, and let all of this inform your actions.

Changing the world isn’t a mighty ambition, and it’s definitely not just the domain of politicians or people wearing capes. It’s something everyone can do. Use thought, knowledge and humour to make the changes you create positive.

My experience is that biscuits make a very good starting point for a conversation so have one now and share any thoughts, ideas or questions in the comments section below.

We’re almost back in London now and instead of sunshine there’s a very bright moon in a clear sky. I’m looking out of the window and enjoying the last moments of the journey.

Related tics

Leave a Reply

Login Register

This site uses Akismet to reduce spam. Learn how your comment data is processed.