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Speaker 1: You're listening to a podcast from News Talks, it'd be

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Speaker 1: follow this and our wide range of podcasts now on iHeartRadio.

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Speaker 2: You've probably seen the headlines about this high profile incident

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Speaker 2: at the Bafter Awards. John Davidson. He's a well known

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Speaker 2: Tourettes campaigner. He was there to celebrate the nomination of

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Speaker 2: the film I Swear, which is based on his life,

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Speaker 2: but during the ceremony, unexpectedly rather shouted out and explete.

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Speaker 2: If here's a little bit of that audio, do you?

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Speaker 2: A Ja and I are delighted to be presenting the

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Speaker 2: first BAFT of the night for a vital part of

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Speaker 2: movie making.

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Speaker 3: We're here to celebrate the artists who expand what's possible

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Speaker 3: on screen.

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Speaker 2: Visual effects can create spectacle, but the best work serves character.

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Speaker 3: In Stuck, you may have had some strong and offensive

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Speaker 3: language today. If you've seen the film I Swear, you

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Speaker 3: will know that film is but the experience of a

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Speaker 3: person with Tourette syndrome. Tuet syndrome is a disability, and

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Speaker 3: the ticks you've heard today are involuntary, which means the

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Speaker 3: person who has Touette syndrome has no control over their language.

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Speaker 3: We apologize if you were offending.

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Speaker 2: So obviously we had to bleep out what the explet

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Speaker 2: of was and as allan coming, the host explained that

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Speaker 2: it was in voluntary, that that particular interruption from John Davidson,

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Speaker 2: but it has caused a hell of astir around the world.

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Speaker 4: It's interesting, isn't it, Because if he's saying sorry, if

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Speaker 4: you're offended, So if it is a disability and we

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Speaker 4: accept that and it's involuntary, then being offended is there

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Speaker 4: any different than being offended by anyone's disability.

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Speaker 2: It's a great question.

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Speaker 4: So because people have been offended by people's disabilities in

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Speaker 4: the past, have been you know, people have been ostracized

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Speaker 4: with disabilities and haven't felt that they're be able to

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Speaker 4: leave the house because of people's reactions to it.

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Speaker 2: To discuss further, we are joined by Emma Henderson. She

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Speaker 2: is the general manager of Tourette's New Zealand. Very good

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Speaker 2: afternoon do you. Emma.

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Speaker 5: Hi, good afternoon to you too.

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Speaker 4: Let's take it right back to basics, Emma, what exactly

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Speaker 4: is Tourette syndrome?

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Speaker 5: Thank you? This is great Soett's and drome is a

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Speaker 5: neurological condition. First and foremost, it is a condition that

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Speaker 5: involves involuntary movements of sounds, so movements and sounds which

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Speaker 5: we call tips, and they are both physical and vocal.

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Speaker 5: So to have it actual diagnosis of Tourette syndrome as

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Speaker 5: opposed to a tip disorder, have to have both the

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Speaker 5: physical and vocal and for at least twelve months, and

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Speaker 5: then it has to have an onset before the age

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Speaker 5: of eighteen. So it's a really difficult process to get

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Speaker 5: a diagnosis. And it is on a spectrum, so to

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Speaker 5: put it simply, it's not a habit, it's not a

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Speaker 5: tension seeking moment, and it's not a behavioral choice. It's

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Speaker 5: a neurological condition.

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Speaker 4: So everyone all knows someone who makes the odd and

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Speaker 4: voluntary noise. Often you know older members of your families,

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Speaker 4: they have the hymphs in the reading and the clicks. Yeah,

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Speaker 4: is that so that's not Tourette's that that's something thing else?

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Speaker 4: Is that what you're saying, Well.

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Speaker 5: It could be. So it is really difficult because interestingly,

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Speaker 5: a third of all people with tourets grow out of it,

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Speaker 5: a third carry on into adulthood is reduced capacity, and

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Speaker 5: the final third carry on with an adultthood same capacity.

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Speaker 5: So if you're talking about, you know, the older uncle

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Speaker 5: in the family that coughs and makes the noise. He

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Speaker 5: may have had tourets when he was younger, it wasn't

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Speaker 5: around then, it didn't have the diagnosis or anything like that.

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Speaker 5: Or they have a tech disorder, and we support those

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Speaker 5: as well as the Treats Association because it can be

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Speaker 5: just as affecting and confronting as actual truth.

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Speaker 2: Is it related to obsessive compulsive disorder or is that

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Speaker 2: in a similar area related?

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Speaker 5: It's not related. However, sixty to eighty percent those instead

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Speaker 5: of stats do have of people with Turet syndrome do

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Speaker 5: have a coexisting condition, and that generally is OCD or ADA.

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Speaker 5: So it is in the same sort of neurological vein, yes,

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Speaker 5: but different diagnoses.

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Speaker 4: Do people know that they're doing it? It's involuntary, But

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Speaker 4: do they know they've made the sound? Do they know

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Speaker 4: they're about to make it? What's their sort of awareness

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Speaker 4: of what's going on?

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Speaker 5: Really interesting question, that's a great question. So yes, they

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Speaker 5: do you know they're through either the discomfort that it

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Speaker 5: makes them feel, the pain that it can cause themselves,

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Speaker 5: or obviously the noise that comes out. So they do

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Speaker 5: know they're feeling it. Interestingly, quite a number of people

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Speaker 5: that have tourets have a thing called a premonitory urge,

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Speaker 5: which is it's like it as to feeling a sneeze

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Speaker 5: coming on. So you know, when you've got that moment

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Speaker 5: where you're building up a snees and just I'll get

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Speaker 5: that out, that's what tan feel like. They know they're

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Speaker 5: going to have it, and then when they do the tick,

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Speaker 5: it does provide a release sensation very similar to a sneeze.

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Speaker 5: In fact, you can almost like interrects and the tick

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Speaker 5: and then voluntary nature of it to a sneeze. You know,

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Speaker 5: no one's going to choose in yes, season, often it's

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Speaker 5: at the most inopportune time, and you know, it just happens.

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Speaker 5: And that's really a good way of thinking about a tip.

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Speaker 4: Talk us through, and I apologize if I pronounce this wrong,

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Speaker 4: but cop prolalia as am I saying that correctly? Well? Yeah, coppromalia, Yeah, okay,

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Speaker 4: So talk us through that kind of tourette, the kind

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Speaker 4: that this John Davidson suffers from.

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Speaker 5: Yeah, And interestingly, the type the type that we are

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Speaker 5: sort of I'll do inverted sort of commas famous for

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Speaker 5: right it's what we're known for. So coprolalia or cop

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Speaker 5: polalia is actually only affecting ten percent of the people

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Speaker 5: living with tourette. So that's really a key point we

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Speaker 5: need to make it across. And it is obscene words

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Speaker 5: and language, and it is obscene. So toret isn't about

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Speaker 5: one and one hundred people. A recent studies out of

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Speaker 5: America are saying it's in one in sistem picks intrests,

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Speaker 5: and so coppolaria is ten percent of those. So it's

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Speaker 5: not a huge amount, but it is what we are

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Speaker 5: famous for, and it is represented in the media and

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Speaker 5: comes across and social media is often comedic, and it's

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Speaker 5: not always for the person living with it. So and

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Speaker 5: this has all come about obviously because of the factors.

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Speaker 5: So and we'll take this opportunity to raise to raise

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Speaker 5: awareness where we can. So we welcome this discussion and

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Speaker 5: we thank you for bringing it to light. One really

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Speaker 5: helpful way to understand cropy lada is in this situation,

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Speaker 5: everybody on the planet knows the words that was used

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Speaker 5: because we know it. We've been taught it in everybody's brain. However,

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Speaker 5: knowing the word is different from using it. It's you know,

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Speaker 5: we know that it's something that sits in the brain

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Speaker 5: and we know not to say it. And as someone

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Speaker 5: without turets, we have the ability to control and keep

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Speaker 5: those words safe the way where they belong in the

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Speaker 5: recesses of the brain and not on the tongue for

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Speaker 5: someone was touretts and in particular copernalia. The difficulty is

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Speaker 5: not the thought or the word itself, but the neurological

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Speaker 5: impulse to vocalize. It's a neurological impulse, especially in really

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Speaker 5: high times of street saw attention or anxiety, because it

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Speaker 5: really does increase in heightened attention. So what happens is

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Speaker 5: basically the brain misfires and it reaches the language that

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Speaker 5: is often the most socially charged or emotionally loaded because

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Speaker 5: those words carry such neurological weight. So it's why it

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Speaker 5: can sometimes seem very pointed or loaded to the relevant situations.

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Speaker 5: And it's really highlighting numerous times in the movie that

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Speaker 5: is about John Davidson. Is when you get to watch

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Speaker 5: the movie, which is coming out in March in New Zealand.

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Speaker 5: I've been lucky enough to see it a few times.

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Speaker 5: It shows that this isn't his first occurrence of that

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Speaker 5: he did it to the queen when he got his obe.

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Speaker 5: It's not the first time. So it's really wantant to

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Speaker 5: understand here that the words are not connected to their

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Speaker 5: belief or intent. They are a symptom of tret and

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Speaker 5: the person understands that the meaning and impact of the

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Speaker 5: language they understand just as much as anyone else. And

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Speaker 5: it's but it's not what they believe. You know, he

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Speaker 5: didn't he didn't intend to hurt.

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Speaker 4: Yeah, that's that's the bit that I think people find

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Speaker 4: so hard to get their head round because and you've

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Speaker 4: got celebrities like Jamie Fox who have said he knew

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Speaker 4: what he was saying, and so that that's hard. So

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Speaker 4: so you're saying, the motivation is almost the the fact

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Speaker 4: that the word is potentially the word's worst word to say.

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Speaker 4: It isn't the motivation, but that is what causes it

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Speaker 4: to be said said if you know what I mean?

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Speaker 5: So that because it, yes, they live their life saying

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Speaker 5: don't say the worst thing, don't say the worst thing.

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Speaker 5: I mean, I like in it to me sitting next

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Speaker 5: to a blo of chocolate. If I say don't eat chocolate,

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Speaker 5: don't eat the chocolate. I'm going to eat the chocolate

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Speaker 5: and think of nothing but And it's a little bit

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Speaker 5: like when you say to someone with stop ticking, they're

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Speaker 5: going to tick more, and in an uncomfortable situation, unfortunately,

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Speaker 5: it really does heighten. We are totally aware that this

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Speaker 5: is a really difficult thing to get for people to

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Speaker 5: understand and get their head around it. We are not

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Speaker 5: dismissing it. We're not dismissing the impact of the language.

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Speaker 5: We're trying to explain that these words do carry weight

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Speaker 5: when they are said with intent, and in the case

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Speaker 5: of tourette and coprolalia, it is not with intent. And

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Speaker 5: I surround myself with our community day and day out,

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Speaker 5: and I grew up with this as a sibling of tourette.

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Speaker 5: It is not with intent. It is an impulse. It

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Speaker 5: is a condition. It's not a belief.

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Speaker 4: It's almost the opposite in the way, isn't it, Because

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Speaker 4: you're yelling out the thing that you think is the

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Speaker 4: worst thing. So you've almost made the opposite value judgment

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Speaker 4: for yelling it out, And that's a really hard thing

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Speaker 4: to get your head. You're like, this is the worst

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Speaker 4: possible thing to say, So I've made a moral judgment

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Speaker 4: that this is somewhere in my brain a moral judgment

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Speaker 4: has been made that this is a terrible thing, and

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Speaker 4: then I'm going to yell yell it out. And so

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Speaker 4: in that circumstance, someone like John Davidson, and you know

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Speaker 4: he's getting vilified at this point, but you've got to say,

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Speaker 4: he must must have known when he's going in there

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Speaker 4: that there was a huge chance that something like this

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Speaker 4: would happen. So he that's an incredibly brave thing for

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Speaker 4: him to do, is to go out in public at all,

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Speaker 4: let alone out in public televised with in a huge

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Speaker 4: important event, with there's a lot of media focus.

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Speaker 5: You just gave me goose pimples by saying brave rather

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Speaker 5: than foolish, which is a lot of people are saying.

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Speaker 5: So I really want to thank you for using that word.

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Speaker 4: John.

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Speaker 5: Speaking of John, he has a kind of tourette or

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Speaker 5: all turettes is difficult to live with. Let's put it

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Speaker 5: out there, whether it can be affecting your motor skills

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Speaker 5: because you can't do handwriting because you're ticking. You can't

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Speaker 5: get a job as a waiter, because you can't carry glasses,

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Speaker 5: you can't read things out loud because your eyes are ticking.

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Speaker 5: John has a kind of tourette that it has cost

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Speaker 5: him so much across his life. I mean we're talking

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Speaker 5: and I've seen this movie. Like I said, so I'm

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Speaker 5: speaking from the movie. It's cost him friendships, his own

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Speaker 5: personal safety, education, employment relationships, you know, just the chance

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Speaker 5: of whatever a normal life means. Yet he has chosen

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Speaker 5: to put himself out there in front of cameras, in

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Speaker 5: front of other people with judgment, and in front of missing,

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Speaker 5: swarmed people to try and explain and educate. And you know,

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Speaker 5: this is a situation that is redefining him after his

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Speaker 5: years of work. So the fact that he did attend

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Speaker 5: the event, people were spoken to beforehand. At the event,

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Speaker 5: there was a two hour delay, so that's something that

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Speaker 5: needs to be addressed. Obviously that did make it to air.

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Speaker 5: That happened, right, John did attend the event with never

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Speaker 5: with the intention I'm sure to upset anyone, But this

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Speaker 5: is a movie about his life that he was the

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Speaker 5: executor for producer on and you know he deserved to

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Speaker 5: have space in that room ahead of many other people

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Speaker 5: that were in that room.

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Speaker 4: Wow.

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Speaker 5: So it is brave of him, and it's risky and

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Speaker 5: it's also brave of the people that are coming out

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Speaker 5: to learn more about it.

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Speaker 2: We are joined by Emma Henderson. She is the general

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Speaker 2: manager of Tourette's New Zealand and having a great discussion

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Speaker 2: obviously on the back of the headlines that the incident

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Speaker 2: at the bathters is causing. Emma, thank you very much

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Speaker 2: again for your time, my pleasure.

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Speaker 4: Now, how common is Turette's in New Zealand.

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Speaker 5: Yeah, look, we just go on the international stacks because

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Speaker 5: research is making in New Zealand. Research is backing globally, honestly,

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Speaker 5: so the research is one in one hundred, but the

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Speaker 5: CDC have come out in one in fifty. Live with

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Speaker 5: Tourettel ticks. The difficulty here is it's really difficult to

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Speaker 5: get a diagnosis because if if someone comes presenting with

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Speaker 5: coughing spluttering, you often go down a anos and throat specialist.

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Speaker 5: You know, it's a journey, and then once you have

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Speaker 5: a diagnosis, it doesn't actually give you anything because there's

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Speaker 5: no treatment, there's no cure, there's no financial support, there's

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Speaker 5: no wrap around support, there's no government support. It's just

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Speaker 5: saying this person is not doing it on purpose. They

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Speaker 5: have a neurological condition. So you know, it is increasing

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Speaker 5: in terms of the rates, and we are getting so

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Speaker 5: many more people reaching out to us, and we welcome

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Speaker 5: that they don't have to have a diagnosis to reach

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Speaker 5: out to us. We'll support them in any way we can.

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Speaker 5: We present to teachers and schools who are really really

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Speaker 5: clean to know more and how they can support the

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Speaker 5: student in the classroom and more and more we're giving.

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Speaker 5: Actually a lot of corporations come to us where I

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Speaker 5: present to them to say, how can you support them

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Speaker 5: as either a client or a colleague? How can we

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Speaker 5: provide wrap around support for someone living with this condition?

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Speaker 4: Is I mean, there's obviously a variety of As we said,

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Speaker 4: it's it's a huge difference between you know, what John

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Speaker 4: Davidson has and what you know someone with you know,

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Speaker 4: at the lower end of it in terms of its

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Speaker 4: effect on their life. But what sort of treatments are

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Speaker 4: there for tarets? And does all of it need treatment

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Speaker 4: or is it some of it just need acceptance?

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Speaker 5: Great loving your questions. Yeah, the biggest treatment' slightly do

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Speaker 5: it for a living. The biggest treatment is acceptance. Absolutely

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Speaker 5: let them tick. That's what we say. Please ignore it

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Speaker 5: don't ignore the person because you're you know, you're risk

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Speaker 5: and ignoring an absolutely fantastic human being, but annoy their

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Speaker 5: ignore their tick. There is no medication or treatment. You

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Speaker 5: can do behavior therapy, but in a lot of cases,

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Speaker 5: the person living with a tick isn't the one that's

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Speaker 5: most put out. It's the people around them. Not always

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Speaker 5: the case. We understand that. Really. Again, interestingly, I say

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Speaker 5: that it might not be interesting to most, but it

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Speaker 5: is to me. Is that it starts generally around six

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Speaker 5: to eight years old, and it peaks during transition and

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Speaker 5: puberty because puberty wasn't rough enough. But let's make these

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Speaker 5: ticks peak, shall we. So that just goes to show

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Speaker 5: that it's really you know, around the environment and things

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Speaker 5: like that as well. So school exams, they can peak.

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Speaker 5: Someone is stressed about something. So you know, I imagine

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Speaker 5: John sitting in the audience there the other night, you know,

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Speaker 5: with all the anxiety the world is looking at his

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Speaker 5: movie about him, so it is peaking and he can't

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Speaker 5: control it, like he said, So the most the biggest

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Speaker 5: treatment that you just said is understanding and acceptance and

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Speaker 5: letting them tick.

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Speaker 4: And how hard is it for family members of people

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Speaker 4: with tourettes.

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Speaker 5: Yeah, so we call it living with tourettes because it

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Speaker 5: is more than just a person with tourette. So I

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Speaker 5: personally am a sibling of tourettes. I grew up with

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Speaker 5: my brother having tourettes and who has gone on to

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Speaker 5: have a couple of his children have tourets Because it

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Speaker 5: does have a family sort of genetic component to it.

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Speaker 5: It does affect everyone, you know, and it's not a

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Speaker 5: reflection of a home life. It's not a reflection of

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Speaker 5: school life. If someone takes more at home than they

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Speaker 5: do at school, it's not a reflection of anything that's

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Speaker 5: going on in their life. Again, it is a neurological condition.

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Speaker 5: It can be distracting, you know, sitting there watching a

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Speaker 5: movie with someone ticking around you. It also can be triggered,

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Speaker 5: So people with tourette can often have triggers that make

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Speaker 5: them more severe or heighten their turets. At the moment.

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Speaker 5: There is one of our community who's unfortunately their trigger

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Speaker 5: is their sister. So when the sister walks in the room,

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Speaker 5: they're a lot more triggered. A person can be a trigger,

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Speaker 5: a stress can be a trigger. Lots of different things.

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Speaker 5: But yeah, it's difficult for the whole family because no

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Speaker 5: one wants to sit there and see their own child suffering.

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Speaker 4: And how would people connect with Tourette's New Zealand if

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Speaker 4: they need support.

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Speaker 5: Yep, absolutely we are here to offer support. So visit

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Speaker 5: to rets dot org dot MZ and you can reach

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Speaker 5: out to us through there. I am at the drop

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Speaker 5: of the hat available to help anyone, to give presentations,

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Speaker 5: to introduce you to our community, to talk to others.

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Speaker 5: We operate a thing called Camp Twitch in the September

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Speaker 5: school holidays that we're bringing back this year, where families

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Speaker 5: can attend, including siblings, and we just offer a week

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Speaker 5: where people with to rec can just be themselves. So

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Speaker 5: we encourage anyone that's wanting to meet other people to

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Speaker 5: get in touch with us about Camp Twitch and if

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Speaker 5: anyone wants to spot through us the Camp Twitch, come

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Speaker 5: on board. But it's just a chance for people with

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Speaker 5: to reck just to feel accepted and amongst themselves and

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Speaker 5: not to feel isolated.

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Speaker 2: Yama, thank you very much for joining us. It's been

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Speaker 2: an enlightening chat. Really appreciate your time and we'll catch

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Speaker 2: up again soon.

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Speaker 5: Thank you for your compassion. Thank you very much that.

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Speaker 2: Is Emikindiscern, the general manager Thutt's New Zealand.

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Speaker 1: For more from News Talk set B, listen live on

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Speaker 1: air or online, and keep our shows with you wherever

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