Emily Elias: When someone with Tourette’s has a sudden outburst of swearing or movements, it can make them an easy target for jokes. But when you live with the condition, it isn’t that funny. On this episode of the Oxford Sparks Big Questions podcast, we are asking, ‘Is it okay to laugh at Tourette’s?’

Hello, I’m Emily Elias, and this is the show where we seek out the brightest minds at the University of Oxford. And we ask them the big questions. And for this one, we have reached a researcher who’s been digging into the world of Tourette’s and how society responds to it.

Melina Malli: Hi, I’m Melina Malli. I am at the Institute of Population Aging at the University of Oxford, and I look into disabilities and social care.

Emily: And particularly, you’re focusing on Tourette’s, right?

Melina: Exactly, yes.

Emily: Can you just walk me through what exactly does it mean if I have Tourette’s?

Melina: Tourette’s syndrome is a neurodevelopmental condition, meaning that it affects your nervous system, and it develops during childhood. Its hallmark, its basic characteristic, is tics. So abrupt, involuntary movement that can mimic any kind of human movement, but they don’t have a purpose. They’re involuntary.

In order to be diagnosed with Tourette’s, you need to have motor ticks, but also vocal ticks. So vocal tics are the utterance of sounds without wanting to, or even words. And in this category is coprolalia, which Tourette’s syndrome is most known for in popular culture. That is the involuntary utterance of obscenities, of swearing. So it’s swearing out of context, not because they’re upset.

So that is, in popular culture, it is depicted as an essential characteristic of having Tourette’s syndrome. But actually, it’s quite rare in people with Tourette’s syndrome. Only about 10% of the people with Tourette’s syndrome have coprolalia.

So from the beginning, a myth buster. Another thing that we need to mention about Tourette’s syndrome is that although the hallmark is tics, it becomes much more complicated because a lot of people with Tourette’s syndrome, I would say 85% of the population, have other conditions as well – co-morbidities. And that is ADHD, anxiety, OCD.

And just to illustrate how complex the condition is, the Tourette’s Association of America illustrates the experience of having Tourette’s, like an iceberg. At the top of the iceberg, what people can see are the ticks, the vocal ticks, and the motor ticks. But what lies underneath, what people can’t see are the other conditions, OCD, anxiety, compulsivity. And that is what actually creates difficulties in people with Tourette’s syndrome. So the combination of everything.

Emily: This combination of everything, this can be obviously something very difficult for researchers to, like, understand and get their head around too, because it’s so individualised in each person, right?

Melina: Exactly.

Emily: So how do you go into looking at how to study something like this?

Melina: There is such a big spectrum. So there are people with Tourette’s that the tics are not even visible, so that doesn’t really impact their quality of life. And then we have other people that the tics are so debilitating that it deteriorates their quality of life. And we try to capture all of those experiences.

Emily: So tell me about your study. What did it try to do?

Melina: So although Tourette’s syndrome has always been linked to stigmatisation, social rejection, and social withdrawal, there were no studies when I started looking into Tourette’s to explore if stigma does exist in people with Tourette’s, which aspects of their life it affects, if it affects their quality of life and how it affects their quality of life. So that’s where our study came in.

So we did an online survey which adults with Tourette’s responded to looking at the aspects of their life and how much they felt they had been discriminated in each aspect and how that affected their quality of life. And we also talked to people with Tourette’s because we wanted to understand the underlying mechanism of stigmatisation. So what is it that drives stigma of Tourette’s syndrome? How does it spread and how does it stick, that stigmatisation? And we wanted to understand the perspective of people with Tourette’s, how they see it and also how parents of people with Tourette’s see it.

Emily: And when you say stigma and how society views it, are you like looking deeply into this sort of element of it where it’s being made a joke within society, where someone with Tourette’s who has these involuntary tics or speech patterns or whatever, then all of a sudden becomes a target for jest.

Melina: So it’s funny that you mentioned that. When we first got into the study, we didn’t. It wasn’t in our radar to look at jokes but people with Tourette’s brought it up and they recurrently brought it up and they highlighted how jokes trivialises their conditions. So what they said is through joking, the condition is reduced to a quirk eccentricity. So instead of being seen as a serious neurological condition, it’s seen as something that everybody can have, it’s just swearing.

And when it’s viewed through a levity lens, it prevents the general public from fully understanding it. So what they talked about really is depathologising it. What does that mean? It means not legitimately viewing it as a pathology. It’s viewed as levity. It’s something that doesn’t have a priority like other conditions.

So whether we want to admit it or not, there’s always a hierarchy of disabilities. Some disabilities are considered more worthy than other disabilities. And when Tourette’s syndrome is viewed as a joke, then it’s less important. It’s just a quirk. It’s not really something that deserves resources. So that hierarchy of disabilities decides really who gets the resources, whether that’s educational resources, whether that’s healthcare resources. And that really makes it so that people with Tourette’s do not get the resources that other disabilities get.

And I’m just going to point out the obvious here, which is in relation to healthcare, there are no NICE guidelines for Tourette’s syndrome.

Emily: What are NICE guidelines?

Melina: So the NICE guidelines are the National Institute for Health and Care Excellence, which guide practitioners as to how to assess and treat a condition. So there are NICE guidelines for every condition you can think of under the sun, autism, eating disorders, everything. But it’s still not considered pertinent to create NICE guidelines for Tourette’s syndrome. Although, and we must highlight this, Tourette’s syndrome can be seen in 1% of the population. So we need to consider what’s happening there.

So when we have no NICE guidelines, people that go to their healthcare provider, then it makes it harder to access the care they need. It creates delays. The GP doesn’t know how to refer them, where to refer them. Is it really Tourette’s syndrome? And that delays the whole process and of course creates more difficulties for people with Tourette’s syndrome.

Emily: And if Tourette’s is viewed within society as something that is trivial and a joke and all that sort of thing, does it also create stigma for people who think they are suffering to actually put themselves forward to their GP to sit in that and have that uncomfortable conversation of, “Hey, I think something’s going wrong with me or with my child or something on that neurological spectrum.”

Melina: Absolutely. And again, in relation to people with Tourette’s, there is no pride that we see in other developmental conditions. But people with Tourette’s syndrome are very self-conscious, and like you said, there is social withdrawal, and there is a denial, and people do not want to be assessed because they’re worried that they’re going to be stigmatised that their condition is going to be considered a joke.

Emily: So this isn’t a joking matter, yet we do see jokes happen casually all the time. What are some examples of jokes about Tourette’s that have been made in popular culture that maybe have made people with Tourette’s feel uncomfortable?

Melina: It’s everywhere. So it’s a crude punchline that we’ve all used at some point because it’s a ‘get out of jail free’ card when we swear, oops, sorry, Tourette’s. And it’s in our everyday discourse – it’s embedded in our discourse.

It’s not just edgy comedians like Jimmy Carr that use it, but it’s people that are very well respected in showbiz. And I’m going to point out the legendary drummer of Nirvana, Dave Grohl, the Foo Fighters’ frontman, which I personally love. During the Glastonbury set, he said that I’m going to use the F word in every sentence. I think I might have Tourette’s. Now, of course, there’s no malice behind that joke. But what it does is it causally links Tourette’s syndrome to swearing. And that is the only story afterwards that’s been told about Tourette’s syndrome. That’s what people learn about Tourette’s syndrome.

Then we have people like Johnny Depp in his defamation trial. He used it when the judge told him you need to wait before you answer a question. And he said, ‘Sorry, Tourette’s.’ Again, there’s no malice behind it. I don’t think Johnny Depp was set out to make fun of people with Tourette’s. But what it does is exemplifies it’s a shorthand, it’s a comic shorthand, and it’s linked to lack of self-restraint, which is not the exact story. It demeans the real story of having Tourette’s syndrome.

Emily: And when you asked people about these sorts of examples, what did people with Tourette’s tell you about how it made them feel?

Melina: So it disappointed them, because then they can’t really talk about having Tourette’s. And what they pointed out is that in contrast to blatant discrimination, when people discriminate openly, then you can call them out on it. You can say, well, no, this is not appropriate. But you can’t do that with jokes, because they’re worried that they’re going to be described as humourless. And there’s nothing worse in today’s society than being called humourless. There’s nothing worse than being called killjoy.

So people have to suck it up. And lots of our participants said how difficult that is for them to just laugh along, because they have to weigh up are they going to be considered killjoys or are they not? How do you respond to that form of discrimination? It’s much more difficult.

Emily: I mean, you’ve written an entire book about this. It’s called Tourette’s Syndrome, Stigma and Society’s Jests coming out soon. What do you hope people take away from this book and the conversations that come from it?

Melina: In relation to humour, which we talk about a lot in the book. First of all, we are not policing humour [either?]. We’re not killjoys. We all believe that we need laughter in our lives. But laughter and humour is a powerful tool – a very powerful tool. And like any powerful tool, it can be used for good and it can harm sometimes. And these kind of humour that we talk about perpetuates stigma and misunderstanding and marginalised the ones that are already quite marginalised.

But there is another form of humour that allows people with Tourette’s and other disabilities to take ownership of their stories. And in the context of the book, we talk to a lot of stand-up comedians with Tourette’s syndrome, and they use a rebellious form of humour. And it subverts the prevailing beliefs about the condition. So it entertains, but it also dismantles stigmatisation. And it helps us, people who don’t have Tourette’s, to confront our own misconceptions about Tourette’s syndrome. So what it does is it puts a mirror to our face. And then we laugh our own misconception, and we laugh at the absurdity of our society and our ableist society that doesn’t allow people with Tourette’s to thrive.

So going back, do we laugh at Tourette’s syndrome? I think it’s more funny to laugh with people with Tourette’s syndrome while they make fun of the ableist society we live in.

Emily: This podcast was brought to you by Oxford Sparks from the University of Oxford, with music by John Lyons and a special thanks to Melina Malli. Her book, Tourette’s Syndrome, Stigma and Society’s Jests, is out April 20th. Tell us what you think about this podcast we are on the internet at Oxford Sparks. Or you can head to our website, OxfordSparks.ox.ac.uk.

I’m Emily Elias. Bye for now.