RAY JOBLING:
Right. Microphone? Right, um... Thank you. Hello, everyone. My name is Ray Jobling, and I'm a fellow of St John's. And it's now the 12th time that I've had the privilege of giving the welcome to the Annual Disability Lecture. You'll know that it's jointly organised and hosted by the university and St John's College. And, on this occasion, we would once again thank the Cambridge Science Festival who included this event as one of theirs in their own publicity.

Now, you haven't come to hear me but to listen to an interesting and inspiring lecture. But before handing over to the Vice Chancellor, there are a couple of things which I think we need to say before we move to the main business.

First, some practical matters. The proceedings, that's to say the lecture itself and the questions, are being recorded for future use on the website. Also be aware that there is a photographer working. If you simply don't want your picture to be taken, then signal to him and that then won't happen. The good news too is that drinks and canapés will follow after the lecture.

Then, just finally, a quick word about the background for those that might be unaware, Jess is one of the 10% of those with Tourette's syndrome who have coprolalia, and this is the technical term for involuntary obscene tics. Bear in mind then that these are part of Jess's condition and her life, though they only make up a tiny proportion of what she might say. So, that's it from me, and the Vice Chancellor will get us underway. Thank you.

SIR LESZEK BORYSIEWICZ:
Ray, thank you very much, indeed. The 12th lecture in the annual series is quite a milestone, and we owe a big vote of thanks to you, Ray, for the work that you have done. You've been Chair of the committee steering the Disability Resource Centre and also the University's Disability Committee. And as a Fellow and sometimes Senior Tutor of St John's, he's enabled that these lectures are actually held at the college. They are designed and intended to recognise and discuss the issues involved in disability and how this impacts on the university population as a whole. So, Ray, a very big thanks from all of us for all that you have done.

Now, over the years, and I have been coming now for four years, it's really pleasing to see how many of you come to the audience not just from the university but from the local community and all of us who see these issues as absolutely core and important. There are those from the health, social, voluntary services who have an interest, obviously a professional interest, in how we manage disability as a course, but I am actually ever more pleased to see people who are showing an interest in what we do and how we can actually do it better. So, please, advice and guidance as we go forward is really very welcome.

Yeah, we face some challenges. Not least from the current administration and the planned changes to the Disabled Students' Allowances, which we are working our way through. As always, never look to anything from any government. But, nevertheless, we will ensure that the impacts are as minimal as possible. But a lot of hard work is going on in the Resource Centre to manage this.

It is, however, pleasing to see the success of other initiatives that enhance the collegiate university's support for disabled students, such as the continuation of the DRC's Asperger syndrome project and the employment of a specialist Asperger syndrome adviser, Alison Fawkes. So, we are trying to do our best.

But this year, and particularly for this lecture, we have a really fascinating presentation. Jess Thom was chosen in acknowledgement of her work in creating new ways of thinking about disability, and her ability to describe and discuss her experience of living with Tourette's in a way which, frankly, others can relate to. As a writer and an artist, she promotes and celebrates difference. As co-founder of touretteshero.com, her creativity and humour bring a new dimension not just to this lecture series but any lecture series she graces. So, Jess, we welcome you. Thank you for being with us. And your talk is entitled, "Laughter as a Catalyst for Change." Jess, over to you.

(APPLAUSE)

JESS THOM:
Hedgehog. Hedgehog. Biscuit. Hedgehog. I'm going to check everybody can hear me. Biscuit. Great. That "biscuit" bit sounds good. Hello, I'm Jess. I am a writer, artist and part-time superhero. Biscuit. Cat. Hedgehog. I also have Tourette's syndrome, biscuit, a neurological condition, biscuit, that means I make movements and noises I can't control called tics. Biscuit. Hedgehog.

There are three things you need to know straight away. Firstly, biscuit, you are going to hear the words "biscuit" and "hedgehog" a lot in the next hour, biscuit, hedgehog, cat, biscuit, cat. Secondly, several times a day, biscuit, my tics suddenly intensify to a point where I, biscuit, I completely lose control of my body and speech, biscuit. These episodes, biscuit, which I call ticcing fits, biscuit, look seizure-like and need similar management, biscuit. Biscuit, if this happens while I'm speaking, my support worker, Matthew, will help me, biscuit, and the Vice Chancellor will take over, biscuit, with a, biscuit, with a mime and a dance and an ice skating routine, biscuit.

(LAUGHTER)

You weren't aware of that! (LAUGHS) No pressure! Biscuit.

Finally, biscuit, if I say something funny, you're absolutely allowed to laugh, biscuit. It would be a bit weird if you don't, particularly given the title of my lecture, "Laughter as a Catalyst for Change". Biscuit. Biscuit.

I'm going to give a brief description of myself, biscuit, for anyone who might find this useful. Biscuit. I am a 30-something white woman of average build with curly hair and a very cool wheelchair. Biscuit. Hedgehog. Biscuit. Having Tourette's, biscuit, gives me a wiggly body, biscuit, that's constantly on the move, biscuit.

My most frequent tic, biscuit, involves punching my chest. Biscuit. It's happening now. Biscuit. Now. Biscuit. Now. Biscuit. But don't worry, biscuit, I'm wearing padded gloves, biscuit, to stop, biscuit, me getting sore.

All the slides I'll be showing, biscuit, with the exception of some images which I'll describe in more detail when I get to them, biscuit, are colourful hand-drawn cards with the title of each section on them. Biscuit. Biscuit. I am incredibly proud, biscuit, to be with you this evening, biscuit, giving the 12th Annual Disability Lecture. Biscuit. When I looked at the previous guests, I felt a little bit daunted by the amazing speakers that have preceded me. Biscuit. Biscuit. Whilst I may be the first speaker without a doctorate or loads of letters after my name, I'm almost certainly the first superhero.

(LAUGHTER)

Biscuit. Hedgehog. Biscuit. To be clear, this isn't going to be a talk about laughing at disability and won't be examining the damage that poor presentations of disability can do. I'm choosing to focus on the enormous potential, biscuit, of shared laughter to change attitudes, society, biscuit, and the balance of power, biscuit. I propose, biscuit, that reclaiming the laughter surrounding difference, biscuit, and choosing how to use it biscuit, is an act of resistance, biscuit, and a catalyst for social change. Biscuit. I'm going to share some of my personal experiences, biscuit, talk about the changes I would like to see, discuss what we need to protect and explore the ways, biscuit, small acts can make a big difference, biscuit.

People are often curious about what tics feel like. So, I'd like to play a very quick game to help you understand, biscuit. So, turn to the person next to you and say, "Hello". Biscuit. Now, look into their eyes, and try not to blink for as long as possible. Hedgehog. Hedgehog. I will do it with you! (LAUGHS) Hedgehog. (LAUGHS) I very rarely win! Hedgehog. Hedgehog. Cats.

Have we got any non-blinking champions? Hedgehog. Brilliant. Biscuit. Biscuit. Biscuit. Hedgehog.

Like blinking, biscuit, tics feel like a build-up of pressure. Biscuit. Biscuit. Hedgehog. Biscuit. And they can also be very uncomfortable. Biscuit. Tourette's, biscuit, is one of the most frequently misunderstood conditions on the planet, biscuit. Lots of people have heard of it, but most of what they know is based on myths and stereotypes. Biscuit. Let's get some of these out of the way now. It's often characterised as the swearing disease. Biscuit. Fuck a sheep. (LAUGHS) In fact, only 10% of people with Tourette's have obscene tics. I am one of them. Bears. Penguin sex. Biscuit.

(LAUGHTER)

But, even so, I am as likely to shout about domestic appliances, dinosaurs, and B-list celebrities, as I am to shout "fuck". Fuck. Hedgehog.

It isn't a rare condition. It's estimated to affect 300,000 people in the UK alone. Biscuit. But is a spectrum condition. Biscuit. So, it affects each person differently. Hedgehog. Biscuit. Some people's tics are barely noticeable, like mine!

(LAUGHTER)

Hedgehog. While others will behave in a way that make them stand out. Hey, like Nigella Lawson!

(LAUGHTER)

Technically. Biscuit, Hedgehog. Biscuit. As conditions go, Tourette's manages to generate a lot of laughter, biscuit. I start 99% of my phone conversations with strangers by explaining that I have Tourette's and will therefore be making unusual noises throughout the call. About 90% of the people on the other end, biscuit, emit a loud giggle when, biscuit, when they hear the word "Tourette's". I can't think of another disability that causes such spontaneous amusement, biscuit. For the record, the 1% of calls during which I don't explain my tics are from market researchers.

(LAUGHTER)

Hedgehog. Biscuit. Hedgehog. Cats. Biscuit. Hedgehog. Biscuit. Biscuit.

A few years ago, I watched a YouTube video of someone pretending to have Tourette's. It had almost 30,000,000 views. I remember thinking, "Wow! Everyone watching this video, biscuit, is being short-changed. Biscuit, the reality of life with Tourette's is much funnier than that".

(LAUGHTER)

Biscuit. Hedgehog. Biscuit. I decided it was time, biscuit, biscuit, to provide a better alternative. Hedgehog. Cats. Biscuit.

About Touretteshero. Touretteshero is an organisation, biscuit, and a superhero persona, biscuit, that's evolved in ways I could never have imagined, biscuit. As an organisation, we increase awareness by sharing the humour and creativity of Tourette's and by campaigning for a more inclusive society. Biscuits. Ben Nevis. I want Ben Nevis to be accessible. Hedgehog. Biscuit. We do this online through our website and social media by inviting artists to use my tics as a springboard for their creativity. Through creative encounters with artists, musicians, scientists, academics, biscuit, and partner organisations, and bears. Biscuit. Not any bears to date. Biscuit. Biscuit.

By speaking about the impact of damaging political policies and by devising and delivering events for children and young people with and without Tourette's, put simply, our mission is to change the world one tic at a time. Cats. Hello, cats. Biscuit.

So, why do we do this? Biscuit. We do it to reclaim the laughter associated with Tourette's. Biscuit. To challenge the assumptions about the condition and about disability more generally. To reduce fear of difference, biscuit, and help everyone feel more comfortable talking about it. Biscuit, because it is crucial the voices of disabled people are heard to counteract the rhetoric that is often used about disability. Biscuit. Fuck. Because disability isn't a niche issue. Biscuit. Biscuit. Almost one fifth of the UK population identifies as disabled. Biscuit. Biscuit. And because anybody with a body or a brain can become disabled at any point in their life. Biscuit. Having thought about what this might mean, biscuit, can make it easier to manage unpredictable changes. Cats. Bi-pi-pi. Biscuit. Hedgehog. Hello, cats. Biscuit.

Finding my power. Biscuit. I co-founded Touretteshero in 2010 with my friend, Matthew. It came into being because of a conversation we had that radically changed the way I view my condition. Biscuit. Biscuit. The conversation boils down to a single sentence. Biscuit. Hedgehog. Matthew described Tourette's as a crazy language-generating machine, biscuit, and told me not doing something creative with it would be wasteful. Biscuit. Hello. Biscuit. This idea took root, and it's how I came to understand my tics as my power and not my problem. Biscuit. My life was changed by a single sentence, biscuit, and I now know that every conversation, biscuit, question or shared laugh has the potential, biscuit, to create change. Biscuit. Biscuit.

But why are my tics my power? Because they let me do things, biscuit, neuro-typical people can't do. Biscuit. Like collide ideas together and create incredible new concepts. Without my unusual neurology, we wouldn't have the joy of "Disco penguins dancing in your dreams." Biscuit. Or, biscuit, "It's the hippies of outrageous fortune, biscuit, that weigh heavy on the minds of dogs".

(LAUGHTER)

Biscuit. Hedgehog. Or, "You know what you are missing now? The Cambridge biscuit rally". Hedgehog. Biscuit. Alan. Biscuit. Through Touretteshero, I can recast the symptoms of my condition as a springboard for creativity, biscuit, and invite people to make artwork in response to my tics.

I thought I would share some of my favourites with you now. So, first up, "Capital letters talk to themselves at night." The letter A and the letter B, fast asleep under a patterned bedspread. Biscuit. Up next, "95% of biscuits are birds." Biscuit. I'm not sure there is any statistical evidence for that, biscuit.

(LAUGHTER)

Biscuit. A boy in a stripey shirt is about to eat a tiny bird he has selected from a sweet box full of other tiny birds. Biscuit.

"God's moving to Watford on Sunday." Biscuit.

(LAUGHTER)

Biscuit. A torn, weather-beaten church poster has the slogan, "God's moving to Watford on Sunday", written on it. Who knows what that will do for house prices? Hedgehog. Hedgehog. Hedgehog. Biscuit.

"A diagram of Nigel Mansell's penis."

(LAUGHTER)

Biscuit. A black and white sketch of a penis wearing a motorsport helmet. Biscuit.

"Stuff my mouth with pencils." Biscuit. A line drawing on graph paper showing a man with 66 red pencils in his mouth. I counted them all. Hedgehog. Cats.

"I've got limbs, they're multiplying." Biscuit.

(LAUGHTER)

Hedgehog. Biscuit. A computer-generated image, biscuit, showing the lead characters from the film Grease. Sandy is on the left, and Danny is on the right, both wearing tight black dancewear, biscuit, and both have arms growing out of their arms. They look like branches of a tree. Biscuit.

"Postman Pat gave me herpes."

(LAUGHTER)

Hedgehog. Biscuit. A colour illustration showing a topless Postman Pat sitting on the edge of a bed, pulling his trousers on, biscuit. Someone is asleep next to him. Pat appears to be blushing with guilt. Hedgehog.

"Squishysquirrel love."

(LAUGHTER)

Biscuit. A cartoon squirrel hugs a large pink bottom. Hedgehog.

"Alien Barbados donkey training company." A black and white circular logo with an alien donkey head, biscuit, at the centre and a tiny map of Barbados on the right. It's the training company everyone doesn't know they need.

(LAUGHTER)

Biscuit. Biscuit. Finally, "Wrecked on the rocks in my mind." An intricate line drawing. Biscuit. Hedgehog. The head and shoulders of a figure sit centrally in a highly patterned brain. The head is open, revealing a pile of rocks inside. Cats. Hedgehog. Bees. Biscuit.

Soon after starting Touretteshero, we explained the idea to my friend, Ruth, biscuit, who also has Tourette's. She was the first person with the condition we spoke to about our plans. Hedgehog. Biscuit. Biscuit. I remember, biscuit, Matthew saying to her, biscuit, he would like to see a future in which people copied tics, not because they were mocking them but because they thought they were cool. Biscuit.

A year ago, I heard Ruth and her 11-year-old niece talking, and it reminded me of this early conversation. Here is a blog post I wrote at the time. It is called "The Noise of Joy". Biscuit. It's late, and I'm in bed. In the next room, I can hear murmuring, gentle singing, occasional bickering and the unmistakable sound of wriggling. Biscuit. I can also hear Ruth's tics. Biscuit. Ruth's staying over tonight to do my support, and she's brought her eight-year-old nephew and 11-year-old niece with her. We've had a great night, hanging out, watching films and wheelchair dancing. Biscuit. A few moments ago, biscuit, Ruth's tics rounded on the moon and came up with a spontaneous poem. I found her niece's response particularly moving, biscuit. She said, "I wish I could just make up a poem like that. It takes me ages, but you just come up with it in an instant." Biscuit.

This articulates an idea at the heart of Touretteshero, biscuit, that tics can be a rich source of spontaneous creativity, but hearing it come from a child was brilliant. Biscuit. A moment later, I looked up and caught sight of the lamppost that I can see from my bedroom window. Lampposts live off the state. Lampposts. I am easily distracted by lampposts. Let's not think about them.

(LAUGHTER)

Biscuit. I shouted, "Night, night, lamppost", and Ruth's tics immediately did the same. Then two smaller voices wished the lamppost good night too. Hedgehog. Biscuit.

Before Touretteshero, I found it hard to talk about Tourette's without tears. But recognising the creative potential of my tics and developing the confidence to describe my experiences, has been more beneficial than I could have ever imagined. Biscuit. Fear creates barriers. Biscuit. I've had tics, biscuit, since I was six. Biscuit. They were less noticeable when I was a child, biscuit.

In my early 20s, they began to intensify and have a much bigger impact on my life. Biscuit. Hello. Biscuit. Cats. As they became more noticeable, I became aware of the fear that crept in with them, biscuit. Fear of me by others. Was I drunk or dangerous? And my own fear of other people's unpredictable reactions. Biscuit. Hedgehog. I could see some strangers were scared to catch my eye. Others seemed worried about saying the wrong thing. A few people thought I was possessed. Biscuit. And I was frightened too. Frightened by the changes I was experiencing. Frightened of losing control of my body and my voice, biscuit. But mostly I was frightened of other people's assumptions, the judgements and their laughter. Biscuit. I could feel fear creating barriers in my life.

Creating Tourettesbero, biscuit, was instrumental in helping me address my own fears and start breaking down other people's. Biscuit. I began by letting myself think about Tourette's, biscuit. I started sharing my experiences in a daily blog, biscuit, and developed a new language to communicate my needs. Clear communication is critical to fighting fear and preventing it from cluttering our minds and our communities, biscuit. In my experience, humour plays an important role in cutting through fear and helping people feel at ease with difference. Cats.

Laughing matters. Biscuit. Tourette's can be funny. When we started Touretteshero, this felt like a risky thing to say. Biscuit. Of course, it's not 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. Hedgehog. Hello. Biscuit. Lots of the situations I find myself in are funny too. Biscuit. At the airport, I'll be the one explaining to security that there's not really a bomb in my bag.

(LAUGHTER)

Hedgehog. Biscuit. Biscuit.

The question I am most frequently asked by children after, "How do you sleep?" and, "What's your favourite biscuit?", is, "Do people laugh at you?" Biscuit. To which I usually reply, "Yes, sometimes people laugh at me. Sometimes they laugh because I tic something funny, and sometimes I laugh at myself." Biscuit. The difference between laughing at someone, biscuit, and with them is well understood. But people sometimes say this is a blurred line, biscuit. Personally, I don't experience it in that way at all, biscuit. I can't think of a single occasion, biscuit, where I wasn't completely sure whether someone was laughing at me or enjoying the humour of a situation with me, biscuit. Biscuit. But fear of crossing this line, of causing offence, of being ridiculed or trivialising disability can put people off utilising one of the most powerful tools we have for connecting with other people. Hedgehog. Biscuit. Hello.

The Location of Laughter. Just down the M4 next to, biscuit, next to Hemel Hempstead. Possibly?

(LAUGHTER)

I'm hoping it's a little bit more broad than that. Biscuit. Biscuit. I passionately believe that laughter has a serious role to play in sparking, biscuit, and shaping change. But like all tools, biscuit, it needs to be used with thought and skill. Biscuit. I'm sure we can all think of examples of comedy that peddles prejudice, biscuit, especially in relation to disability. Jimmy Carr and Frankie Boyle. Two potential examples. Biscuit. Hello. Biscuit.

Where disability, biscuit... Where laughter sits is key. Biscuit. Dr Laurence Clark explores this in a paper, "Disabling Comedy: Only When We Laugh". Biscuit. He draws an important distinction between extracting humour from a person's impairment, biscuit, and satirising disabling, biscuit, barriers. Biscuit. He concludes, biscuit, when assessing whether a portrayal is positive or negative, biscuit, it must always be questioned where people are laughing. Biscuit. Whether people are laughing at impairment or at disability. Biscuit. Biscuit. There are plenty of jokes that play on the stereotype of Tourette's as the swearing disease. One which frequently does the rounds on Facebook goes like this. "What do we want? A cure for Tourette's! When do we want it? Cunts." Biscuit. Biscuit. People often share this joke with me thinking I'll find it funny, biscuit, but I don't, because it reinforces the swearing myth. The humour sits in the wrong place. Biscuit. Someone recently tweeted me with a variant of this joke which I found much funnier. "What do we want? Awareness for Tourette's. When do we want it? Biscuit."

(LAUGHTER)

Hedgehog. Biscuit. Biscuit. When people challenge jokes that reinforce stereotypes, they're often accused, biscuit, hello, cats, of being a cat lover... Not most commonly! They're often accused of not having a sense of humour, biscuit, or are told it's just a joke, it doesn't mean anything. The bottom line is, biscuit, joking about the symptoms of a disability or health condition that you know nothing about, is unlikely to make great comedy. Hedgehog. Conversely, using humour to explore the surreal experiences a disability can bring is a much more exciting proposition.

By way of an example, I would like to tell you about my night with Zac Efron. Hedgehog. Hedgehog. Cats. Last night, I had a strange ticcing fit. Biscuit. Biscuit. It was strange, firstly, because I had enough speech to tic some funny things and, secondly, because of the strong presence of Zac Efron. For anyone, biscuit, unfamiliar with Zac's work, he's an actor, teen heart-throb, biscuit, millionaire and star of my Wednesday night fit. While I lost all sensible communicative speech, my brain allowed the following, biscuit. "Zac Efron hit me in the face. Zac Efron, Mars rover four. Zac Efron dangerous dogs diagram. Zac Efron cookery school for wimps. Zac Efron, take me to a dolphin sanctuary. Zac Efron, tea towel and spatula-ette set." Who even knows what a spatula-ette set is?!

(LAUGHTER)

Hedgehog. Biscuit. "Zac Efron lacy pyjama hotline. Diane Abbott speaking."

(LAUGHTER)

Hedgehog. Hedgehog. Biscuit. Biscuit.

So, what needs to change? We've discussed the power of humour to catalyse change. But what specifically can we expect to do with it? Here's what I am using it for, biscuit. To end the public perception that disabled somehow means broken. Biscuit. To turn assumptions about disability into discussion. Biscuit. Hedgehog. And to celebrate the brilliance of difference. Biscuit. Hello, cats. Biscuit. People are often nervous about calling me disabled, biscuit, because they view it as a negative term, biscuit. I don't see it that way at all, biscuit. For me, saying I am disabled acknowledges the barriers I face because of a collective failure to consider difference. But if these barriers are acknowledged, biscuit, they can be changed. Understanding my life in this concept, biscuit, in this context increased my confidence and more importantly, it enabled me to participate in finding solutions. Biscuit. Hello. Biscuit.

The damage of diminished expectations. While Touretteshero was inspired by a single sentence, biscuit, it's been shaped by countless experiences. One such moment happened at a conference when I met a man with Tourette's whose tics were barely noticeable, but the cumulative effect of negative reactions he'd experienced growing up, biscuit, hedgehog, biscuit, hedgehog, biscuit, had severely impacted on his confidence. Biscuit. He had learned, biscuit, to expect that other people would respond negatively towards him, biscuit. And this expectation, biscuit, seemed to be restricting his life. Biscuit. I'd argue that damage to confidence is always harder to undo than it is to prevent.

At Touretteshero's heart is the idea, biscuit, that strengthening the confidence and resilience of disabled people, particularly children, has the potential to create significant social change. Here's the formula. Confident children equals confident adults, equals undiminished expectations, equals more inclusive communities. Biscuit. Touretteshero focuses on inclusive events for children because creating positive memories means, biscuit, children and young people have positive experiences to draw on when times feel tough, biscuit. What we must protect.

Before I talk about what we should be building and creating, I want to talk about what needs protection, biscuit. We live in a time when hard-won equalities are steadily being eroded. Biscuit. We need to be alert and engage with this, biscuit. This DSA, Disabled Students' Allowance. When I was eight, I was diagnosed with dyslexia and dyspraxia. Biscuit. I was a chaotic child, biscuit, but for the most part I was well supported throughout my education. Despite the help I received, I found learning hard. But in the run-up to my GCSEs, I had an epiphany, biscuit. I discovered that learning in the way I was being taught wasn't working, I could try a different approach. Hedgehog. By using some of the specialist study skills I had been taught at primary school and by my own obsessive tendencies, biscuit, I found a way of revising that worked for me, biscuit. This, along with two important provisions, one giving me extra time to complete exams and the other meaning that my spelling, grammar and handwriting wouldn't count against my grades, meant I did much better than anyone was expecting. Hello, cats. Biscuit. Romans. Biscuit.

So, instead of leaving school after my GCSEs, biscuit, I stayed on and did A-levels, biscuit. My new-found confidence in learning and my ability to find practical solutions to make this process easier grew. Biscuit. Hello. I borrowed my dad's dictaphone. Hello, Dad. Biscuit. (LAUGHS) I borrowed my dad's dictaphone and recorded a lot of my lessons, listening back to them on long walks with the dog. Biscuit, because it wasn't just my slow handwriting that was making note-taking difficult. I was finding it increasingly difficult to stay still. Biscuit. Being able to re-listen to lessons while I was on my own and on the move made a huge difference to my ability to take in information, biscuit.

So, I left school, biscuit, with A-levels in Art, English literature and History and went to university to study art. University life suited me and, despite my tics becoming more troublesome, I thrived in a creative environment. Hedgehog. Biscuit. Biscuit. A large part of my success was due to Disabled Students' Allowance, DSA. This fund covers the extra costs of studying for students with a disability or specific learning difficulty. For me, it meant I could finally get my own dictaphone and a computer with specialist software. These helped me to continue to learn in a way that worked for me, biscuit. I left university with a first class degree, something I am confident wouldn't have happened without this support. Crucially, DSA was tailored to meet my specific needs and meant I was able to keep up with my peers, biscuit, biscuit. DSA, biscuit, funding levels the playing field and ensures disabled students have, biscuit, have what they need to succeed, whether it is equipment, support workers or extra travel expenses. Cats. Or a motorbike. Or a lumberjack shirt.

(LAUGHTER)

Those are less commonly needed.

(LAUGHTER)

Hedgehog. Biscuit. Hedgehog. Biscuit.

Last year, the former Universities Minister, David Willetts, announced plans to modernise support for disabled students, biscuit. As has become all too clear over the last four years, when a minister uses words, such as "modernise", "reform" or "streamline", they mean "cut", "dismantle" and "destroy". Biscuit. Biscuit. The ill-defined proposals he announced revealed yet another hard-won form of support for equality under attack. Biscuit. The proposals included restricting the support for students with specific learning difficulties, vastly reducing, biscuit, the provision of equipment, restricting access to non-medical help, so support workers, ending funding for specialist accommodation, and redefining disability. Willetts' big idea was universities themselves would cover the gaping hole in support left by the cuts, biscuit, but with no additional resources and their budgets already slashed.

The proposals leave many unanswered questions, including, "Is there any evidence that universities are better placed to respond to disabled student needs than DSA? What support and resources will be made available to universities to ensure they can help disabled students access higher education? And where will disabled students live with specialist, biscuit, biscuit, with specialist accommodation if they have specialist accommodation needs, biscuit, hedgehog, if this is no longer funded through DSA?" Following coordinated campaigning by students and institutions, a decision on some of the, biscuit, on some of these proposals has been postponed until 2016. Biscuit. Postponed is not the same as scrapped.

My university life was happy and successful. The support I was given by the institution and by DSA, biscuit, meant I was able to succeed in a way that could easily have been thought impossible, biscuit. This has had a major impact on my life chances and my career. It was at university that I first began to appreciate that the difficulties arising from a disability could be overcome with practical solutions, hedgehog, biscuit, and openness. Biscuit. This knowledge has served me well, biscuit, and has helped me remain resilient, biscuit, and independent in the face of significant personal challenges. Biscuit. Not only do these cuts threaten the success of individuals, they also risk making our institutions less diverse and embedding discrimination within higher education. Biscuit.

Access to Work. I would like to talk about something else that's under threat. I would like to start by reading a blog post that I wrote last October. And it's called "Access Impossible". Biscuit. Today, I sat in our sunny playground and cried. Biscuit. My colleagues were all busy doing their work in the office, but I couldn't do mine. Biscuit. I was stuck on the phone to the Department of Work and Pensions, pleading with them to pay the money owed to my employer for the cost of my support workers. Biscuit. Hedgehog. At work. Biscuit. Biscuit. The scheme which funds this is Access to Work, biscuit, which provides practical support for disabled people in employment. With tears running down my face, I explained my predicament to yet another help desk adviser. Biscuit. Access to Work cover the cost of the support workers I need to help me do my work safely and effectively. Without them, I wouldn't be able to work at all. My support workers help me type when I can't rely on my own hands, get about in my wheelchair and keep me safe when I'm having ticcing fits.

Until now, Access to Work has always been quick and efficient. The support enabled me to keep working when my tics first intensified and when my mobility and independence suddenly deteriorated three years ago. So, when I asked to transfer one day's worth of support from one organisation to another, I didn't expect any difficulties. Especially as I wasn't asking for any extra increase in hours. What I didn't know was Access to Work was undergoing changes that would make my experience drastically difficult and cause me to be crying with frustration. To be clear, Access to Work aren't refusing to help me. They have agreed to pay my support costs for both organisations. The problem has been with the process of claiming the funding. Biscuit. The system works like this. Each organisation pays the support worker and then claims back the money from Access to Work. But now it seems Access to Work are making it very difficult for organisations to get back the money that is due to them. Biscuit.

Here is a summary of what has happened so far, biscuit. Since my original request, I have had at least three different advisers processing the claim. Access to Work agreed the funding straight away but provided nothing in writing for three months, and it took five months to receive the necessary claim forms. Biscuit. They changed their postal address and claiming procedures without telling anyone, meaning claims forms were going to the wrong address for weeks, biscuit, and were all returned without payment because they didn't include everything needed for the new procedures. The result of all this is that two non-profit organisations have been left carrying the cost of my support, now running into thousands of pounds. I have been left terrified by the financial burden this has placed on them. I'm spending hours of my work and spare time trying to resolve the situation.

Sadly, biscuit, the difficulties I am describing aren't isolated. They appear to be deliberate and systematic. In addition to making it harder and slower to access support, they are also cutting support to some disabled people. Around 37,000 people use, biscuit, per year use Access to Work. But if anyone were to suggest that this support places a financial burden on the taxpayer, they'd be wrong. Widely accepted figures show that for every £1 spent on Access to Work, biscuit, the Treasury gets back £1.48 in taxes paid and lower benefit claims. Five years ago, when I started in my current job, biscuit, it didn't cross my mind, biscuit, that I'd ever need constant support. But just as everything changed for me, so it can for anyone else. Access to Work meant I had been able to continue doing the job I love, continue to support myself financially, and to contribute to my local community. But for people who find themselves in need of Access to Work now, I am not confident they would have the same support necessary to keep working.

Rather than levelling the playing field for disabled workers, Access to Work seem to be creating obstacles for them, biscuit, obstacles that my non-disabled colleagues would never have to tackle. We can all play a part in protecting these systems, biscuit, and ensuring that young disabled people entering already challenging environments, like university or the job market, have effective support systems. Hedgehog.

Acts of anticipation. Biscuit. By an act of anticipation, I mean, biscuit, anything that is created, biscuit, or provided in anticipation of a future need, so that it's there to protect, inform or assist somebody when they need it, biscuit. Last year, biscuit, cat. I had sex with a cat.

(LAUGHTER)

Not true! Not true! Hedgehog. Biscuit. (SIGHS) I'm going to blush.

(LAUGHTER)

Biscuit. Last year, we worked with the Tate Schools and Teachers team to create "We Forgot the Lot", biscuit. This was a large-scale creative takeover event for children and young people with and without Tourette's. Biscuit. Hedgehog. Three hundred children worked with eleven artists to reinvent, transform the newly renovated Tate Britain. We set them a simple task. Go in to the galleries, get involved with the artists, biscuit, hedgehog, cats, biscuit, build a ladder to a new dimension... That wasn't in the list! Biscuit.

(LAUGHTER)

And help the Tate to transform to make sure nothing gets forgotten. Permission to change space to meet individual needs was the conceptual starting point for this event. Although it was never spelt out explicitly, it was at the heart of "We Forgot the Lot".

As I touched on earlier, Touretteshero focuses on events for children because we believe that creating positive memories can be protected in the future. Leanne Turvey and Alice Walton from Tate explored this idea in their paper, "Superheroes and Bedfellows". They write, "Reactive acts of resistance by people against single acts of oppression is different, temporarily, biscuit, to the idea of constituting a capacity to resist in a group of people. One is a response, and one happens over time, both to resist oppression now and in the future." It is this point about visible presence that corresponds to our sense of what "We Forgot the Lot" achieved through the significance of young people's visible presence in the public space of Tate. Just like positive memories, shared laughter can be protective too. It is also, biscuit, an incredibly powerful way to increase visibility and bring people together. Together, we can build. Together, we can build a deepened understanding of each other. Biscuit. Biscuit. We can build raised expectations amongst non-disabled and disabled people, biscuit. Biscuit. We can biscuit, hedgehog... We can have increased individual and community resilience, biscuit. We can build more inclusive communities. And we can be more intolerant of bad jokes. Hedgehog.

What should we tell children about disability? Biscuit. Children need to know about the social model of disability which defines disability as being caused by a failure to consider a difference in the way society is organised. This doesn't mean teaching them about it in a one-off lesson. We need to make it visible at all times. We need to point out barriers and show them how to fix them. Biscuit. We need to acknowledge difference and encourage children to keep their curiosity. What can we learn from children about difference? One of the great things about talking to young people about disability, hedgehogs, cats, bees, ice lolly for a spade, biscuit, is that they often ask upfront questions, and, most importantly, they then listen to the answers. Hedgehog. As people get older, they seem to worry more about saying the wrong thing or being perceived as nosey or, worst of all, they think they know it all already. Biscuit. This makes it much more likely, for them to, biscuit, make assumptions that makes, biscuit, and this makes it even harder to challenge their preconceptions if they are wrong. Hedgehog.

I had an experience at the doctors which I would like to share with you. This is another blog post, and it is called "Baby on Board". Biscuit. We had only been in the waiting room for a minute. So, when a boy aged about two and a half made a beeline for us, biscuit, he confidently presented me with a plastic gold medal and a newspaper cutting and then stood back and surveyed my wheelchair. Biscuit. He inspected every bit of it. Biscuit. Walking all the way round several times. Identifying and checking every moving part, biscuit. He paid particular attention to the brakes, biscuit.

He did all of this with no words but lots of smiles. He was completely captivated by the wheelchair and fascinated by how it worked. He didn't seem at all worried by my unusual noises or movements, and his curiosity and friendliness were delightful. Biscuit. His mum could see I wasn't bothered by his activities and left him to explore while keeping a watchful eye on what he was up to. Biscuit. Hedgehog. He particularly liked the fact that my footplate, hedgehog, biscuit, could be lifted up and down, biscuit. After testing this thoroughly, he put it down, secured it in place and jumped on board.

(LAUGHTER)

Biscuit. He looked at me and beamed. Biscuit. If I'd been selling the wheelchair, I imagine this would have been the moment I clinched the deal.

(LAUGHTER)

Biscuit. Hedgehog. Biscuit. Children are often ready to laugh, question and listen. Biscuit. This is something we can all learn from. Creating change isn't always a battle. I used to think that attitude change, biscuit, was a long, drawn-out process, cats, biscuit, involving constipated antelopes.

(LAUGHTER)

Hedgehog. Biscuit. Touretteshero taught me that it can happen very quickly and often starts with a single conversation, biscuit. Creating change doesn't always have to be a battle. It can be joyful, persuasive, discursive and silly. Biscuit. If we can get people to engage, we can get them to change. Hedgehog. Biscuit. So, biscuit, I'd like to, biscuit, end with a few ideas that feel important. Biscuit. The realm of the imagination is all too easy to overlook, the realm of the imagination. But don't underestimate the potential of this space to unlock new ways of thinking and engaging with other people.

Second up, communicating outwards. Biscuit. People make assumptions about what being disabled means all the time. Challenging these and encouraging people to see things from a new perspective is essential to creating more inclusive communities. This can only happen if we share our experiences openly and stay alert to our own judgements and assumptions. Biscuit. Number three, mind your language. How we talk about disability matters. Language guides us through different ways of thinking. Don't feel you have to settle for other people's definitions if you don't feel comfortable with them. Think reflectively about the language, biscuit, about the language you use, biscuit, and question how you use it. Biscuit.

Finally, giggle analytics. This, biscuit, hedgehog, biscuit. Reflect on the location, biscuit, of laughter. Look for new ways to use humour in your life and be ready challenge laughter that doesn't feel right. Cats. During the last 12 months, biscuit, I have spent over 150 hours having ticcing fits, on average, biscuit. On average, that works out at almost three hours a week. That's clearly quite a lot. But when I looked at a survey showing how people in this country spend their time, I discovered it's about the same time people typically spend looking for lost property, biscuit, or reading surveys. Hedgehog.

(LAUGHTER)

I was shocked to discover that most people only spend an average of six minutes a day laughing. Biscuit. Thanks to Tourette's, biscuit, I know that my friends and I laugh a lot more than this, and I really hope this talk has upped your average too. Biscuit.

Changing the world isn't too mighty an ambition. And it's definitely not just the domain of politicians or people wearing capes. It's something everyone can do, biscuit. Whatever changes you want to bring about, biscuit, be ready to talk, listen, laugh, question and imagine, biscuit, and let all of this inform your actions. Thank you very much.

(APPLAUSE)

I am happy to answer any questions if there are any. Hedgehog.

SIR LESZEK BORYSIEWICZ:
That was fantastic, Jess. Thank you very much. Now, you have got a world first. You can ask a question to a superhero.

(LAUGHTER)

JESS THOM:
You can. Not about cats! Only questions about bear pits. Hedgehog. Cats. Hedgehog. Biscuit.

COLIN MARSH:
Jess, good evening.

JESS THOM: Hiya.

COLIN MARSH:
My name's Colin Marsh, and I am a retired university careers adviser, not at this university, but I am also vice-chairman of the British Stammering Association, and we have an issue over some of the things you mentioned. I've got friends who stammer really badly who have the kind of tics and body movements that you have. I am very impressed by this. I have never heard... I haven't heard such an inspiring talk for a long time. We try to use humour as well, though it takes a long time.

There's a big difference, I feel, between the sort of guy who... One of our members, who is a stand-up comedian and has made a living out of his stammer, very different to the kind of caricature we get on the TV, people like Ronnie Barker, who, to be fair to him, was embarrassed about playing a stammerer because he didn't quite know effect it would have.

I think we have got a lot in common. I think... I was bullied as a child. We're very concerned, and I'm sure you are, about... You talked a lot about children. Children with a stammer do get bullied. We get lots of calls to our helpline about that. I got bullied as an adult. I got forced out of one job because of my stammer in a university. So, I think your organisation and mine have a lot in common. I think we should be working together because the whole communication issue is something which is not talked about, people don't take it seriously. Forgive me, you are a wheelchair user, that's apparent to anybody. A stammerer, nobody knows they stammer until they start to speak. And I think we have a hard battle to convince people that stammering is a disability.

Incidentally, could I say I loved your cartoon about Nigel Mansell. My wife is his cousin, so I am going to take that one home.

(LAUGHTER)

I think you are right. If you... I learned to cope with my stammer when I suddenly realised I can make it funny. When the kids laughed at me, that hurt. When I turned it back on them, I thought I had achieved something. So, thank you for what you said tonight, and I hope we can work together in future.

JESS THOM:
Yeah. Please do get in touch. I think the, biscuit, the location of laughter is key biscuit, and where it is coming from and also, for me, giving permission to laugh. I did that at the start of the talk, biscuit, and that's something... Giving permission to laugh or ask questions is something I find really useful in my day-to-day life. Being open has made a big difference to me in overcoming some of the challenges you have described. Hedgehog. Any other questions? Hedgehog. Yep. There's one up there. Hedgehog. Is it about cats?

(LAUGHTER)

Hedgehog. Cats. Hedgehog. Fuck. Hedgehog. Fuck.

SPEAKER:
Hi, thank you. I just want to ask you, it's just on the off chance that you've actually seen this, there was a film a couple of years ago on BBC Four called Holy Flying Circus, which was about the controversy of Life Of Brian in 1979. There was a character in it, fictional, who was dealing with Tourette's. There was a mixed response to the way in which it was presented, but it was definitely played for laughs. Is this something you have actually come across or something you might want to have a look at?

JESS THOM:
I have come across it. I remember it at the time. I can't remember distinctly how I felt, biscuit, because I can't recall that particular incident. My general feeling is that, biscuit, and what Dr Laurence Clark describes is that when people are just mimicking an impairment or finding the humour in an impairment, biscuit, that's not particularly, that's not necessarily particularly funny. The humour, for me, often comes in the barriers or the experiences that are linked to disability or about how other people respond or the things that I...the humour that I can draw from my life. That doesn't directly come, biscuit, from the fact that my body moves or my legs are wobbly. It does come from the tics to a certain extent.

I also think that there is a real problem... There is a real issue with stereotyped portrayals of disability and stories and work, cultural presentations about disability that are created by non-disabled people and then acted by non-disabled people. I think visibility of difference is really important, but you don't get that just by looking at someone mimicking the symptoms of a particular condition. Biscuit. So, my feeling is that it's great to have diversity represented, but I feel like that the real humour of Tourette's, for example, you wouldn't know about unless you lived with the condition. So, that's what we should be communicating through media and through our cultural opportunities.

SPEAKER:
Thank you.

JESS THOM:
Hedgehog. Cats. I'm going to go back and listen to that program and try to remember what I felt about it. Hedgehog. Hedgehog. Cats. Aladdin. Hedgehog. Shout! (LAUGHS)

SPEAKER:
I thought that was really inspiring. I am a doctor and I wondered how... I wondered... Your encounters with doctors and the NHS... Is there anything you would like to share with us about them, and are we getting better?

JESS THOM:
Biscuit. Firstly, the NHS rescued me. On numerous occasions, the NHS has totally saved me. Biscuit. The breadth of that service and the responsiveness of something, you can't underestimate. We really have to protect it at a time when that is deeply under threat. Biscuit. And the NHS, biscuit...

(APPLAUSE)

And the NHS is much bigger than just emergency medicine or cancer care. For me the amazing thing about having, biscuit, experienced increased levels of needs was that I was suddenly tapped into all these specialist departments that I never even knew existed and were amazing and, biscuit, and created things from wheelchair services to the orthotic service, biscuit, that really made a big impact on my life. So, the NHS is brilliant.

In terms of my experiences with doctors, lots of those are positive. I think one of the things that I really notice, biscuit, in medical environments is how often I am not spoken to directly. Biscuit. Biscuit. And that's at every level, from reception staff, to nurses, to doctors. There seems to be a fairly systematic difficulty in feeling comfortable around disability. And I have, you know, biscuit, had doctors who have made assumptions about me based on the way that I moved or the condition that I have and made, you know, biscuit. I remember a doctor saying, "So, I assume... So, you obviously don't work." Biscuit. I was like, "Actually, yes, I do." Biscuit. He was obviously embarrassed by that assumption. But I think there are some issues about interactions because those interactions matter because they can put people off getting help or they can mean that you miss the real issue for someone, biscuit, particularly if someone isn't able to articulate their needs, biscuit, confidently at that moment.

It's really important that doctors are able to listen and feel comfortable about asking questions to the right person. Biscuit. Hedgehog. Biscuit. My care worker isn't going to know my... My support worker isn't going to know my detailed medical history. It is a bit weird repeatedly asking them when I am giving you the answers.

(LAUGHTER)

Hedgehog. Hedgehog. Hedgehog. That's an easy one.

SPEAKER:
Following on from that question, would you like to share with us some of your experiences at art school and how you used it as part of your condition?

JESS THOM:
Hedgehog. Biscuit. Biscuit. My, biscuit, my tics became increasingly difficult, biscuit, increasingly more noticeable to other people while I was at university, both undergraduate and I did an MA in photography. It was in the second institution that I began to really notice the fact that I was moving and making unusual noises much, much more. I found it very difficult to talk about. But, biscuit, the supportiveness and the flexibility of those institutions was really useful, biscuit. For me, being, biscuit, for ages, for ages and ages, I'd resisted the creativity of Tourette's and doing anything creative that related to my disability. I saw them as separate. I didn't feel that there was any value in them overlapping. I was absolutely wrong.

The minute that I allowed myself to explore Tourette's and my experiences creatively, everything got better. Biscuit. It is so easy, particularly given the messages, the negative messages, that we have about disability or the way that people should look or behave or be, it is easy to feel that it is your body's fault, and it is not. Once you accept that and start looking outwards and exploring it, it's been amazing, biscuit. And I have explored art forms through Tourette's that I would never have got to otherwise. So, last year, biscuit, we created a show called "Backstage in Biscuit Land" which we took to the Edinburgh Fringe. I'd never performed in that way before, but writing and performing and experiencing the amazing cultural event that is Edinburgh is something that was opened up to me because of Tourette's and Touretteshero. Hedgehog. Cats. Biscuit. Any questions about Aladdin?

(LAUGHTER)

I am not that knowledgeable on Aladdin, despite what I might say. Hedgehog. Hedgehog. Cool. Hedgehog. Biscuit.

SPEAKER:
It is just a practical question about your life with Tourette's. I just wonder to what extent does it affect you when you go to sleep or when you are alone by yourself, and how long after you wake up do the tics start and have you ever woken up in the morning and thought, "Maybe I haven't got Tourette's" because you have no tic?

JESS THOM:
Biscuit. They're all great questions. There's a few questions in there. Firstly, biscuit, for, biscuit, for lots of people, biscuit, with Tourette's, tics diminish when they are asleep. Some people do still tic in their sleep, although often less. Biscuit. I used to tic a lot in my sleep, although that has improved. Getting to sleep and staying asleep has been a big problem at certain points, and I'm quite, biscuit, and it's still something that I feel like I work quite hard to maintain good patterns around sleep because it can be really damaging if you are not sleeping well. So, sleep is an issue for lots of people with Tourette's for various reasons, biscuit. Hedgehog. Cat.

I can't remember the other part of your question. Oh, yeah. Biscuit. So, biscuit, I tic when I'm going to sleep. Biscuit. I do some movements in my sleep, and I can have intensifications of my tics when I'm asleep. So, I spend very little time on my own at the moment because of the way that my Tourette's affects me and my levels of support at the moment. I start making a noise straight away. Hedgehog. Biscuit.

Finally, biscuit, and, finally, Tourette's, biscuit, does respond to surroundings. So, anything I've ever known or experienced can become a tic. But it also... Lots of that is absolutely unrelated to what is going on, biscuit, and my mind is clear of biscuits. Biscuit. But sometimes it does relate to the surroundings. There is a lamppost I can see from my bedroom window and, biscuit, that lamppost, biscuit, my tics have developed a strange, biscuit, relationship with that lamppost, biscuit, and often that is the last thing my tics are talking to at night and the first thing they're talking to in the morning. Biscuit. Yes, they have a tempestuous relationship, Tourette's and the lamppost.

(LAUGHTER)

Hedgehog. Cats. Hedgehog. Biscuit. If you want to find out more, please look at touretteshero.com and follow us on social media. Biscuit. There's a frequently asked questions page on our website which might be of interest to anyone who wants to find out more about Tourette's. Please do get in touch and get involved. It's for everybody, with and without tics. Hedgehog.

SIR LESZEK BORYSIEWICZ:
Jess, what a wonderful place that we can begin to just call the evening towards a halt. But there are plenty of opportunities to ask some questions later on in the evening and in the reception. I'd just like to say, on behalf of the university and all of us who have been here to hear you today, what a wonderful experience it has been. Thank you for sharing your humour with us, and thank you for being a superhero.

JESS THOM:
Well, thank you very much for having me. It's been lovely.

(APPLAUSE)