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John Davidson: 40 years of living with Tourette syndrome

鈥� and the new film, 鈥業 Swear鈥�, made about his life.

John Davidson has been the poster boy for Tourette syndrome since 1988, when a documentary about him called 鈥楯ohn鈥檚 Not Mad鈥� aired on 麻豆社 One. It showed the then 16-year-old from the Scottish Borders, living with explosive, often sweary tics, in a world that didn鈥檛 understand the condition.

Three decades on, we鈥檙e much more aware of Tourette syndrome and that鈥檚 in no small part down to John and his campaigning. Now, a film based on his life - 鈥業 Swear鈥� - starring Maxine Peake and Robert Aramayo is about to be released.

In this episode, John talks to Emma Tracey about the challenges of teenage tics, being shut in a school cupboard by a teacher so he didn鈥檛 distract the class, and the impact the physical tics are having on his joints and muscles as he gets older.

Presented by Emma Tracey
Sound mixed by Dave O鈥橬eill
Produced by Emma Tracey and Cordelia Hemming
Series producer is Beth Rose
Senior News Editor is Lisa Baxter

Release date:

Available now

33 minutes

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Transcript

听

1st October 2025

bbc.co.uk/accessall

Access All 鈥� Ep 180

Presented by Emma Tracey

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EMMA-听听听听听听听听听听听听听听 Hello, I鈥檓 Emma Tracey, and this is Access All, the 麻豆社鈥檚 weekly disability and mental health podcast. This week we have a fascinating chat with John Davidson who lives with Tourette syndrome. And I think before we start the interview I just want to mention that John is one of the 10% to 15% of people with Tourette鈥檚 who has coprolalia, which means that sometimes his tics are sweary. 听And also some of his tics can be unintentionally inappropriate.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 If you like what you hear please subscribe to Access All on 麻豆社 Sounds.

MUSIC-听听听听听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听听听听听 John Davidson has been the poster boy for Tourette syndrome since 1988 when a documentary about his extraordinary life, called John鈥檚 Not Mad, was aired on 麻豆社 One. So many people who saw the documentary at the time remember that 16 year-old boy from the Scottish Borders living with explosive and sometimes sweary tics in a world that just didn鈥檛 understand the condition. Thirty-six years later we鈥檙e much more aware of Tourette鈥檚, and that is in no small way down to John. He has been in four more documentaries, he鈥檚 campaigned tirelessly, and he鈥檚 helped many, many young people with Tourette鈥檚 feel better about themselves. John鈥檚 here because I Swear, a film all about his extraordinary life, starring Maxine Peake and Robert Aramayo is about to be released. Hi, John.

JOHN-听听听听听听听听听听听听听听听听 Hi, how are you doing?

EMMA-听听听听听听听听听听听听听听 I鈥檓 really well. how are you today?

JOHN-听听听听听听听听听听听听听听听听 I鈥檓 doing really, really well. It鈥檚 been a busy last couple of days, full on doing media stuff.

EMMA-听听听听听听听听听听听听听听 It must be a bit surreal to have a film out that鈥檚 about you and your life.

JOHN-听听听听听听听听听听听听听听听听 It is massively surreal. A bit overwhelming at times; it鈥檚 been an absolutely massive process.

EMMA-听听听听听听听听听听听听听听 And you鈥檝e been really involved?

JOHN-听听听听听听听听听听听听听听听听 I鈥檝e been really involved, yeah. I鈥檝e been credited with executive producer on the film.

EMMA-听听听听听听听听听听听听听听 Fancy.

JOHN-听听听听听听听听听听听听听听听听 So, I was involved a lot with Kirk when we were writing the script.

EMMA-听听听听听听听听听听听听听听 That鈥檚 the director.

JOHN-听听听听听听听听听听听听听听听听 The director, yeah.

EMMA-听听听听听听听听听听听听听听 Let鈥檚 hear a little clip from the trailer:

[Clip]

FEMALE-听听听听听听听听听听听 John?

JOHN-听听听听听听听听听听听听听听听听 [Whistles]

FEMALE-听听听听听听听听听听听 I can sit here or I can help this lad. Nice to meet you.

JOHN-听听听听听听听听听听听听听听听听 Nice to meet you too [clattering sound].

FEMALE-听听听听听听听听听听听 Tommy, this is John, he鈥檚 come to have a chat about the vacant position.

MALE-听听听听听听听听听听听听听听听 Are you okay with the tics and the swearing?

JOHN-听听听听听听听听听听听听听听听听 What tics? What swearing? [laughs]

FEMALE-听听听听听听听听听听听 I can see he鈥檚 off the medication.

FEMALE-听听听听听听听听听听听 I don鈥檛 think you are okay.

JOHN-听听听听听听听听听听听听听听听听 I don鈥檛 think Tourette鈥檚 is the problem. People not knowing about Tourette鈥檚 is the problem. Educate them.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 I have Tourette syndrome and it makes me tic. Who would pretend to have such a condition? Me.

[End of clip]

EMMA-听听听听听听听听听听听听听听 [Laughs] gosh, there鈥檚 loads of funny, funny bits.

JOHN-听听听听听听听听听听听听听听听听 There is yeah. I mean, there鈥檚 sad bits, there鈥檚 very emotional rollercoaster type bits that takes you on this amazing journey through the emotion of obviously how I must have felt when I was younger, and the trials and tribulations that we had.

EMMA-听听听听听听听听听听听听听听 I hope it鈥檚 okay but we鈥檙e going to talk about all of those now.

JOHN-听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 We鈥檒l start, I think, right at the basics and talk about Tourette鈥檚. People know a bit more about it now. Lewis Capaldi lives with it, so does Billie Eilish, and they鈥檙e talking about it, openly talking about it. But you鈥檝e made it your life鈥檚 work to educate people about it and to help people with it. So, in your words what is it and how does it affect you?

JOHN-听听听听听听听听听听听听听听听听 Tourette鈥檚 is a tic disorder first and foremost. It involves involuntary vocal and motor tics. Now, they could be, motor tics could be body movements, facial tics, eye blinking, leg kicking, arms moving to full body almost like seizure type symptoms. The vocal tics can vary from simple phonic sounds like honking or barking like a dog or miaowing, you know, just any noise that we can make with our voice. To have Tourette鈥檚 you must display the symptoms over a period of a year. And within that year the symptoms need to wax or wane, which basically means they get better and then they get worse, and back and forwards such like. So, after the year is up they would look at what types of tics you have and decide whether you fit the criteria for diagnosis. So, there are still families out there that are sitting waiting years to get diagnosis, because there鈥檚 no guidelines, NICE guidelines, there is no clinical pathway for a GP to know where to send a family.

EMMA-听听听听听听听听听听听听听听 I mean, that鈥檚 where we are now, which is 36 years on from the first documentary about you, and how you were getting on at the time. Let鈥檚 hear a little bit from that:

[Clip]

JOHN-听听听听听听听听听听听听听听听听 Sometimes I think that I say them because I know they鈥檙e disgusting and I know that somebody鈥檚 going to get angry about it or turn their back about it. When I think of that it just makes me worse. That鈥檚 exactly what my mum thinks as well. And the noises as well, I know it鈥檚 going to annoy somebody, but I just can鈥檛 stop myself from doing it.

MUM-听听听听听听听听听听听听听听听听听 His language is very bad now. Some of the words he comes out with is really very shocking. His jerking is not quite as bad. He went through a stage where he was jerking so bad he was falling over. He would suddenly have a rapid arm movement, sat, you know, he would throw his arm to the side and just about knock the person out that was walking next to him 鈥� not deliberate; it was all involuntary. We didn鈥檛 know that at the time though. We didn鈥檛 know what was happening with John at all. In fact we thought he was going mad.

[End of clip]

EMMA-听听听听听听听听听听听听听听 Oh John, what鈥檚 it like to hear that back?

JOHN-听听听听听听听听听听听听听听听听 Quite emotional.

EMMA-听听听听听听听听听听听听听听 And it鈥檚 interesting that when your mum was talking about different tics you were having some of those tics here just now. What affects the tics? What makes them worse? What helps them? What changes them?

JOHN-听听听听听听听听听听听听听听听听 I find that if I鈥檓 very careful with my diet, I tend to stick away from preservatives and artificial colourings, eat as much fruit and veg as possible, cutting things out like fizzy juices, anything with caffeine in it.

EMMA-听听听听听听听听听听听听听听 Interesting. So, that helps?

JOHN-听听听听听听听听听听听听听听听听 These exacerbate the symptoms I feel, yeah. But I think that comes from one of the associated conditions that come alongside Tourette鈥檚 that I have got OCD, ADHD, I have some sensory issues that are going on, so very loud noises I get really, really shocked and have to cover my ears. So, there鈥檚 so many other parts to the condition that we don鈥檛 see or hear.

EMMA-听听听听听听听听听听听听听听 I know, because everyone wants to talk about the swearing and the tics.

JOHN-听听听听听听听听听听听听听听听听 Yeah, that鈥檚 all people seem to be interested in.

EMMA-听听听听听听听听听听听听听听 That鈥檚 all they say.

JOHN-听听听听听听听听听听听听听听听听 And that over the years has created such a stigma for people who have Tourette鈥檚 that don鈥檛 have that part of the condition called coprolalia. And people get frustrated because someone will say, 鈥榃hy do you keep making those movements with your neck? And they鈥檒l say, 鈥極h I鈥檝e got Tourette鈥檚鈥�, and people are saying, 鈥楴o, no, you can鈥檛 have Tourette鈥檚, you don鈥檛 swear鈥�. And it鈥檚 like, you know, it鈥檚 not about swearing all the time.

EMMA-听听听听听听听听听听听听听听 And only 10% to 15% of people actually swear with their tics.

JOHN-听听听听听听听听听听听听听听听听 Exactly, yeah.

EMMA-听听听听听听听听听听听听听听 But 85% have other things going on, like you say; it鈥檚 part of the neurodivergence family.

JOHN-听听听听听听听听听听听听听听听听 It is, yeah.

EMMA-听听听听听听听听听听听听听听 When did Tourette鈥檚 start to come into your life?

JOHN-听听听听听听听听听听听听听听听听 The first symptoms started when I was around about ten, 11 years old. And it started with rapid eye blinking, and it went from rapid eye blinking to facial grimaces, screwing my face up, and then it went from there to my head ticking to one side, my shoulder. And just over the period of maybe a year it progressively got worse, until I got to a stage when I was about 12, 13 where the vocal tics started, where I would, hey, hey, sounds like that. And I鈥檝e always been quite loud, and I think that鈥檚 the difficult part for me and for other people is some of my tics are quite loud and it gives people a fright at times. 听听听听

EMMA-听听听听听听听听听听听听听听 Yeah, and some of them are a little bit inappropriate, unintentionally.

JOHN-听听听听听听听听听听听听听听听听 Yeah, very, very inappropriate, unintentionally very funny as well. Sometimes the way a Tourette鈥檚 mind works is our mind works so quick so constantly the whole time we鈥檙e in a place, we鈥檙e scanning round the place looking for information, looking about. We notice things that we shouldn鈥檛 really need to notice, so it鈥檚 like everyone, everything is overloaded, sensory overload.

EMMA-听听听听听听听听听听听听听听 So, what does it feel like when there鈥檚 a tic brewing?

JOHN-听听听听听听听听听听听听听听听听 When there鈥檚 a tic brewing you get this real bizarre sense of doom. You get this gut-wrenching feeling in the middle of your stomach which slowly rises to your chest, which I can only assume as being like an anxiety type reaction. And then suddenly boom, the tic will appear, and it could be anything from a swear word to telling somebody they鈥檙e beautiful.

EMMA-听听听听听听听听听听听听听听 So, when it鈥檚 brewing you don鈥檛 know what it鈥檚 going to be?

JOHN-听听听听听听听听听听听听听听听听 I don鈥檛 know what it鈥檚 going to be, no.

EMMA-听听听听听听听听听听听听听听 And you can鈥檛 stop it?

JOHN-听听听听听听听听听听听听听听听听 Sometimes, it depends on the surroundings, sometimes the tic can be in context to what鈥檚 going on round about. But most of the time it鈥檚 totally out of context.

EMMA-听听听听听听听听听听听听听听 For me listening to you and not looking at you it鈥檚 very easy to know when it鈥檚 a tic and when it鈥檚 not.

JOHN-听听听听听听听听听听听听听听听听 Hey! Right, yeah.

EMMA-听听听听听听听听听听听听听听 That was a tic right, that hey?

JOHN-听听听听听听听听听听听听听听听听 Yeah. The whole time my right shoulder鈥檚 been ticking.

EMMA-听听听听听听听听听听听听听听 Right. I have no idea.

JOHN-听听听听听听听听听听听听听听听听 My head鈥檚 ticking to the right hand side.

EMMA-听听听听听听听听听听听听听听 That must be exhausting.

JOHN-听听听听听听听听听听听听听听听听 It鈥檚 physically demanding on your body. We often have secondary disabilities that come along because of the effects of the Tourette鈥檚.

EMMA-听听听听听听听听听听听听听听 Like what?

JOHN-听听听听听听听听听听听听听听听听 I get muscle strains all the time, I pull muscles. I鈥檝e got sore joints all the time with repeated tics. I get headaches an awful lot. And the anxiety sometimes can be so crippling that I don鈥檛 even want to leave the house some days.

EMMA-听听听听听听听听听听听听听听 Because you just can鈥檛 deal with people鈥檚 reactions?

JOHN-听听听听听听听听听听听听听听听听 Yeah, and it鈥檚 people鈥檚 reactions that determine how I deal with it.

EMMA-听听听听听听听听听听听听听听 You鈥檝e been dealing with this 40 years now.

JOHN-听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 It鈥檚 very unusual to talk to an older 鈥� I shouldn鈥檛 call you an older person.

JOHN-听听听听听听听听听听听听听听听听 I am, I鈥檓 54 now, I鈥檓 getting there.

EMMA-听听听听听听听听听听听听听听 A middle-aged person?

JOHN-听听听听听听听听听听听听听听听听 Maybe the other side of middle age now.

EMMA-听听听听听听听听听听听听听听 With Tourette鈥檚. What kinds of things do you have to think about? Because it鈥檚 always young people that we hear about now with Tourette鈥檚.

JOHN-听听听听听听听听听听听听听听听听 As a slightly older person in my workplace I鈥檓 very conscious that there鈥檚 all ranges of people that come in about the community centre. So, on a day when the young children are coming in for a youth club possibly if my tics are elevated that day I鈥檒l make sure I鈥檒l stay out of the way. I don鈥檛 want the children to hear horrible, nasty swear words. I know that it's involuntary but it鈥檚 just me as a person, I don鈥檛 want to be doing this, but I can put strategies in place to reduce the effect it has on others and the effect is has on myself.

EMMA-听听听听听听听听听听听听听听 So, you balance that out.

JOHN-听听听听听听听听听听听听听听听听 I balance it, yes. When I was doing youth work years ago lots of the local children knew who I was, they knew about my Tourette鈥檚, and they knew it was involuntary so there didn鈥檛 seem to be an issue. But if I was to go, just walk into a school to do a talk about Tourette鈥檚 I need to make sure that these children are able to understand that it鈥檚 involuntary, and that they will grasp the fact that I don鈥檛 mean to say what I鈥檓 saying, and it is sometimes bad words or very inappropriate stuff. You see, once you tell a child they just think oh right, okay, and they just get on with it; no more questions, nothing asked. They get the odd occasion where youngsters will come up and say, 鈥榃hat鈥檚 it like to have Tourette鈥檚?鈥� so they want to have a dialogue about it and talk about it, so I鈥檓 very open to do that.

EMMA-听听听听听听听听听听听听听听 So, it鈥檚 worth doing?

JOHN-听听听听听听听听听听听听听听听听 Yeah, yeah.

EMMA-听听听听听听听听听听听听听听 As an older, slightly older person with Tourette鈥檚 are the physical things getting worse? What are you thinking about for the future? How do you manage it?

JOHN-听听听听听听听听听听听听听听听听 The effects that Tourette鈥檚 has on the human body is going to create some sort of mental health issue where we have anxiety disorder, we have obsessive compulsive disorder, we often go through a phase where, normally with younger children they have what we call a tic fit. And what that is is quite often children want to hide and mask the symptoms of their condition when they鈥檙e around their peers and at school and things like this. So, a young person masking all day comes home from school and is just so full of energy and all these suppressed tics that it鈥檚 like an explosion as they come through the home door. If you imagine every time you want to blink your eyes, say you鈥檝e got a bottle of fizzy juice, every time you blink your eye you shake the bottle, after 20 or 30 times you鈥檝e done that and then you open that lid the pressure鈥檚 built up, so it needs an outlet. And nine times out of ten the outlet is when the child gets home from school or from out playing with his friends and stuff, and they can have a period from ten minutes up to an hour, sometimes longer, of continuous tics. And it鈥檚 almost like they鈥檙e trying to release all these back out.

EMMA-听听听听听听听听听听听听听听 But very harrowing for them that time.

JOHN-听听听听听听听听听听听听听听听听 Very harrowing, and actually quite scary as well.

MUSIC-听听听听听听听听听听听听听听 We鈥檙e not just a podcast. Find Access All on social media and read our articles on the 麻豆社 News website.

EMMA-听听听听听听听听听听听听听听 Let鈥檚 talk about the film and talk about when you were a young person, [laughs] when you were in your teens. It鈥檚 hard to watch at times because you had such a rough, rough time. Tell me what you were up against at that kind of 15, 16 year-old time?

JOHN-听听听听听听听听听听听听听听听听 Do you know the worst time really for someone with Tourette鈥檚 when you鈥檙e diagnosed young is usually the teenage years when you go through puberty and stuff like this. That was the hardest time for me because I had obviously developed coprolalia, so a lot of my tics were focused on sexual inappropriateness, sexual swear words, suggestibility type things.

EMMA-听听听听听听听听听听听听听听 You had a teenage brain.

JOHN-听听听听听听听听听听听听听听听听 And a teenage brain, yeah, definitely, that鈥檚 what we need to think about.

EMMA-听听听听听听听听听听听听听听 A teenage boy brain.

JOHN-听听听听听听听听听听听听听听听听 Yeah, so it was very, very difficult because I felt compelled to shout things out, and I knew that it wasn鈥檛 the norm, kind of thing. And I tried so much, I was fighting it all the time.

EMMA-听听听听听听听听听听听听听听 Oh honestly, you seemed so stressed all the time.

JOHN-听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 So, so stressed, like, with the documentaries and the film. But you were living in a house with your parents and your siblings, how were they dealing with it?

JOHN-听听听听听听听听听听听听听听听听 They weren鈥檛 dealing with it very well. In the beginning it was quite a bit of a shock, they didn鈥檛 know what was going on. And then once I got the diagnosis I think there was a sense of relief at home. And I think we all thought, especially myself, when I got diagnosed that great, they know what it is, they might be able to give me a tablet and it鈥檒l go away. And that wasn鈥檛 the case. We were then told after diagnosis that it鈥檚 a lifelong condition, and understand it and understand who you are.

EMMA-听听听听听听听听听听听听听听 School didn鈥檛 deal with it very well either it sounds like.

JOHN-听听听听听听听听听听听听听听听听 School were terrible. School were awful.

EMMA-听听听听听听听听听听听听听听 What did they do?

JOHN-听听听听听听听听听听听听听听听听 They did not understand. Some of the teachers it鈥檚 not that they didn鈥檛 understand, they didn鈥檛 want to understand, it鈥檚 like I haven鈥檛 got time for this, if I鈥檝e got to teach 30 odd other kids, you know. And it was like every time I walked into the classroom the teacher would say, 鈥楻ight John, go and pick the desk right at the back of the room facing the wall, or go and sit outside in the corridor at a desk鈥� or there was a cupboard in one of the classrooms and the teacher used to make me sit in there with the door shut.

EMMA-听听听听听听听听听听听听听听 Wow, in a cupboard!

JOHN-听听听听听听听听听听听听听听听听 So that I wasn鈥檛 distracting the rest of the class. And those were really hard times because I really, really felt excluded and I felt so, so alone. And we need to do as much as we can so that these types of things stop happening. People with disabilities are always the ones who end up the brunt of mockery and jokes and the government when they鈥檙e wanting to save some money, let鈥檚 cut disability benefits. Most people with Tourette鈥檚 I would say we want to work. There are some of us that aren鈥檛 able to work because of the severity of their condition. And I just get so, so angry when you hear people saying things like, oh these disabled people they鈥檙e just sponging off the system and stuff. And it鈥檚 like no, you need to really understand and focus on how difficult it is to live with a condition like Tourette鈥檚 or any disability really. And I鈥檓 hoping that this film is going to change things so much that we鈥檙e going to move mountains with this I think.

EMMA-听听听听听听听听听听听听听听 It鈥檚 very powerful. And it goes on to talk about your early 20s, because being a disabled child and teenager is one thing, but also then you become a disabled adult and you鈥檝e got all those things to deal with.

JOHN-听听听听听听听听听听听听听听听听 That鈥檚 right, yeah.

EMMA-听听听听听听听听听听听听听听 And in your early 20s the film cuts to that where you鈥檙e in the film living with your mum and medicated, and things are hard. What was it like being a young disabled adult? And how did things change for you and get a bit better?

JOHN-听听听听听听听听听听听听听听听听 As an adult it got a little bit harder because when you're a youngster and you鈥檙e under 18 you鈥檙e under the supervision of child services. When you become an adult that changes and you then have to be dealt with by adult services. And at that time in my life they were non-existent almost.

EMMA-听听听听听听听听听听听听听听 So, we often hear this on Access All, kids get support, they鈥檙e in a children鈥檚 hospital when they go in, they get different doctors. But when they鈥檙e adults they A, have to suddenly make their own decisions, but B, there鈥檚 not the same support for a condition that鈥檚 seen maybe as more of a childhood condition.

JOHN-听听听听听听听听听听听听听听听听 Exactly, you鈥檝e got that right down to a tee.

EMMA-听听听听听听听听听听听听听听 And things were not easy. The film again, I mean it鈥檚 a really funny film, great acting, lovely moments, but a lot of trauma. There鈥檚 a big person in this film called Dotty. She was your friend鈥檚 mum. Tell me what meeting her changed for you, how did that change things?

JOHN-听听听听听听听听听听听听听听听听 When I first met Dotty I was playing football with Murray down at a local park, and Murray wanted to go up the road to grab some food. And he says to me, 鈥榃ant to join me up the road to the house?鈥� I went, 鈥楢ye, aye, I鈥檒l come with you鈥�. So, we鈥檙e walking up the road and we got to Murray鈥檚 and Dotty鈥檚 house and Murray says, 鈥楯ust come up鈥� and I was like, 鈥楴o, no, I鈥檒l just wait here鈥�. And the next thing I heard this voice shouting out the window, shouting, 鈥楳r Davidson, we don鈥檛 bit in here you know. Do you want some food? Do you want some spaghetti Bolognese?鈥� and I went, 鈥楴o, no, no, no鈥�. Then the next thing she says, 鈥榃hat鈥檚 wrong with my spaghetti Bolognese then?鈥� So, that was the connection, the initial I was frightened to go in because I鈥檇 never met them before, I didn鈥檛 know how Dotty and her husband were going to accept and understand my condition. But right from the word go they鈥檝e been absolutely fantastic. They were a breath of fresh air for me at a time that I needed a little bit more independence from my family. I felt that I needed to give my family a break. They鈥檇 been through so much with me and they were struggling at that time; mum and dad鈥檚 marriage was starting to break down. So, things were quite difficult. And I met Dotty and I said to someone it鈥檚 almost like I鈥檇 been reborn.

EMMA-听听听听听听听听听听听听听听 Wow, that鈥檚 massive. Because she used to be a mental health nurse, right, so she had experience of the medications you were on, people who wouldn鈥檛 maybe behave as you would have thought.

JOHN-听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 She said something really 鈥� if it鈥檚 real life, but it was definitely in the film 鈥� she said, 鈥業n this house if you do something you can鈥檛 help you never apologise for it鈥�.

JOHN-听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 Is that the first time you鈥檇 ever heard that?

JOHN-听听听听听听听听听听听听听听听听 Yes, definitely. It was very surreal because I was brought up by a mother who was very proud, who was quite strict, who needed to be in control bringing up her kids. She never had the support of my dad at the time. And it was just an amazing feeling that I was now sitting with a family who accepted things that I was usually trying to hide. It was just amazing.

EMMA-听听听听听听听听听听听听听听 It still wasn鈥檛 easy.

JOHN-听听听听听听听听听听听听听听听听 It wasn鈥檛 easy, no.

EMMA-听听听听听听听听听听听听听听 There are so many relatable things to disabled people and people with learning disabilities as well where you did something you couldn鈥檛 help, a tic you couldn鈥檛 help while you were out and about and you鈥檇 get beaten up.

JOHN-听听听听听听听听听听听听听听听听 Yeah, yeah.

EMMA-听听听听听听听听听听听听听听 You tried to move out of home and experienced what we would say on Access All disability hate crime, people taking advantage of you.

JOHN-听听听听听听听听听听听听听听听听 Yeah, yeah. I want to go back on to childhood stuff. When a child goes through the kind of turmoil that I did it creates a form of childhood trauma. The unfortunate thing is I had to go into my adulthood carrying that trauma with me; it was never resolved. Then I had trauma as an adult. So, at each stage of my life there were traumatic incidents that I believe helped to shape me as a person, helped to shape the direction I needed to go. And I kind of had it in my mind already that after the first documentary I wanted to shout from the rooftops about Tourette鈥檚, I knew I can鈥檛 be the only person with this condition. I was told it was rare at the time, but now 2025 there鈥檚 over 400,000 people in the UK living with Tourette鈥檚 today; that鈥檚 one in 100 schoolchildren. So, back then it wasn鈥檛 that it was rare, it was because it wasn鈥檛 known about, nobody understood or recognised the symptoms which could lead to a diagnosis. 听

EMMA-听听听听听听听听听听听听听听 Tell me about some of the work that you鈥檝e done?

JOHN-听听听听听听听听听听听听听听听听 Well, as I said earlier, I鈥檝e done a lot of youth work, as well as being the caretaker for the complex that I worked at. I thoroughly enjoyed working with the young people. And it came at a time where I was really feeling misunderstood in Galashiels, and I thought and said to Tommy, 鈥楧o you think if I started helping at the youth club that it would be a way to educate children and young people about Tourette鈥檚?鈥� And he said, 鈥業 don鈥檛 know, but give it a go. Come along on Tuesday night鈥� or whatever. So, that was the start of my youth club journey, and I found that once you explained things to the young people they were so accepting. They鈥檙e an amazing bunch of youngsters. And it鈥檚 dead sad because so many youngsters as they鈥檙e growing up get a bad name, they鈥檙e yobs and all the rest of it. But I have to say the community that I lived in almost wrapped me in cotton wool because they knew.

EMMA-听听听听听听听听听听听听听听 Because of the education you did with them as well though.

JOHN-听听听听听听听听听听听听听听听听 Yes, yeah.

EMMA-听听听听听听听听听听听听听听 You spoke to the police, you know, you worked for that wrapping up. So, where is it taking you now, John?

JOHN-听听听听听听听听听听听听听听听听 It鈥檚 taking me to a world stage and talking to so many more people about the condition. It鈥檚 not just going to raise awareness I believe; I believe it鈥檚 going to become a movement, it鈥檚 going to become a catalyst for other people with Tourette鈥檚 to join on the campaign and get awareness out there and get more understanding out there and get people talking about Tourette鈥檚. We need to encourage people to talk about Tourette鈥檚 in the right way. Because in the past it has been known for one of our dear Prime Ministers a way back had mentioned in an interview that sitting opposite Ed Balls in parliament was like sitting opposite someone with Tourette鈥檚. That was a Prime Minister that came out with this.

EMMA-听听听听听听听听听听听听听听 And these clangers still get thrown in.

JOHN-听听听听听听听听听听听听听听听听 Yeah. And there are still clangers that get thrown in today about someone鈥檚 using bad language, oh have you got Tourette鈥檚 or something, and it鈥檚 seen as a joke. It鈥檚 something that so many people have thought it鈥檚 okay to do. And I鈥檓 like no, wait a minute, please respect the fact that I live with this condition, there are thousands of other people living with it, and it鈥檚 damn well hard, it鈥檚 not easy. And what we don鈥檛 need are comedians, politicians, and we don鈥檛 need people criticising and laughing and mocking the condition. Because I just feel that we鈥檝e not been given a fair hearing, if you like, in the early stages of the media stuff that I鈥檇 previously done. People think it鈥檚 okay to go online and mock the condition, make fun of the condition.

EMMA-听听听听听听听听听听听听听听 So, it鈥檚 okay to laugh at some of the tics that are funny and in context?

JOHN-听听听听听听听听听听听听听听听听 Yeah, definitely.

EMMA-听听听听听听听听听听听听听听 So, when I went to the premier of the film you were there and you were ticking along the film. How did feel when the audience were laughing at the tics that you were ticking? Because some of them were funny.

JOHN-听听听听听听听听听听听听听听听听 They were yeah. And a lot of them were within context of what I was seeing on the screen.

EMMA-听听听听听听听听听听听听听听 Yeah.

JOHN-听听听听听听听听听听听听听听听听 And I felt comfortable that when I was ticking that people were laughing, because I鈥檝e never, ever shied away from the fact that some things that we come out with with the tics can be absolutely hilarious.

EMMA-听听听听听听听听听听听听听听 So, do you think the film will help?

JOHN-听听听听听听听听听听听听听听听听 Definitely.

EMMA-听听听听听听听听听听听听听听 But the one thing that鈥檚 interesting to me is Robert Aramayo plays you and he did loads of research, he went and stayed near you for ages, didn鈥檛 he, and watched you and everything. He doesn鈥檛 have Tourette鈥檚. What鈥檚 your thoughts on that?

JOHN-听听听听听听听听听听听听听听听听 For someone who doesn鈥檛 have Tourette鈥檚 he has gained a massive, massive amount of understanding and empathy. And Rob became me for the whole shoot; Rob is a method actor and from the start of the shoot to the end of the shoot, it went over about 12 weeks, Rob was John Davidson. He even started smoking because I smoked.

EMMA-听听听听听听听听听听听听听听 [Laughs]

JOHN-听听听听听听听听听听听听听听听听 It was just very bizarre and surreal to see Rob smoking a cigarette.

EMMA-听听听听听听听听听听听听听听 Well, he had to look right, didn鈥檛 he?

JOHN-听听听听听听听听听听听听听听听听 Because when I first me Rob I said to him, 鈥業 take it you don鈥檛 smoke?鈥� 鈥楴o, no, it鈥檚 filthy, disgusting鈥�. And he felt that to become me as a character he had to do every single thing that I would have done, my mannerisms everything. So, he鈥檚 done an absolutely amazing job.

EMMA-听听听听听听听听听听听听听听 But couldn鈥檛 someone with Tourette鈥檚 have played you?

JOHN-听听听听听听听听听听听听听听听听 No.

EMMA-听听听听听听听听听听听听听听 Why?

JOHN-听听听听听听听听听听听听听听听听 Because the script, you can鈥檛 script the tics, you can鈥檛. The director a couple of times with young Andrea who played Lucy in the film, a scene in the back of a car, and it鈥檚 an absolutely fantastic scene鈥�

EMMA-听听听听听听听听听听听听听听 It鈥檚 a tic fest.

JOHN-听听听听听听听听听听听听听听听听 鈥t鈥檚 a tic fest, and the script was requiring Andrea to tic at a certain time within the lines. And that鈥檚 just not how Tourette鈥檚 works. So, what the director allowed was for Rob and Andrea to just improvise. So, Rob started off by starting to tic, Andrea鈥ecause when you have two tickers together we set each other off.

EMMA-听听听听听听听听听听听听听听 Really?

JOHN-听听听听听听听听听听听听听听听听 Yeah, it鈥檚 like playing Tourette鈥檚 ping-pong, you know what I mean, it鈥檚 going back and forward, back and forward.

EMMA-听听听听听听听听听听听听听听 So, you hear someone else tic and you鈥檒l tic?

JOHN-听听听听听听听听听听听听听听听听 Yeah, and I鈥檒l tic something that鈥檚 associated to what they鈥檝e ticked. And it was just an absolutely amazing powerful and emotional scene for me because they caught exactly what it鈥檚 like for someone with the condition when you meet someone else. And that was the first time Andrea had met anybody with Tourette鈥檚; she had never met anyone before.

EMMA-听听听听听听听听听听听听听听 Really?

JOHN-听听听听听听听听听听听听听听听听 So, when she came on to the set after the casting, she came on set and was absolutely blown away because there were 30 young people with the condition, there were little boys with autism, there were kids that had quite bad ADHD. I felt it was so important to involve every one of these young people.

EMMA-听听听听听听听听听听听听听听 And show the correct joy.

JOHN-听听听听听听听听听听听听听听听听 And the authenticity as well.

EMMA-听听听听听听听听听听听听听听 So, is there a Tourette鈥檚 joy then?

JOHN-听听听听听听听听听听听听听听听听 There is, there鈥檚 a massive Tourette鈥檚 joy. And I鈥檝e always said to the young people, and I think I say it in the film that when we come together as a Tourette鈥檚 family and bring people together all under the one roof we then become the majority, rather than when we go home we step back into the minority.

EMMA-听听听听听听听听听听听听听听 So, it鈥檚 a relief and a release?

JOHN-听听听听听听听听听听听听听听听听 It鈥檚 a relief, so that when you鈥檙e around people you feel that you鈥檙e able to tic, you鈥檝e not got this trying to suppress the tics and hold them in. You just feel that you鈥檝e got free rein. And the night at the cinema I cried because everyone else in the cinema that had Tourette鈥檚 felt able to tic and felt that they weren鈥檛 annoying anyone and felt that nobody was going to complain about it because everyone was there to watch a film about a guy with Tourette syndrome. And that for me was just an amazing moment, an amazing moment.

EMMA-听听听听听听听听听听听听听听 So, would you go to the cinema as a rule?

JOHN-听听听听听听听听听听听听听听听听 I鈥檝e never been to the cinema since I was ten years old, and the last film I saw was Extraterrestrial, ET. So, it was something that I never had an opportunity to become involved in.

EMMA-听听听听听听听听听听听听听听 So, it was a big moment even for that?

JOHN-听听听听听听听听听听听听听听听听 It was a big moment for that, yeah, massive. And I think it鈥檚 going to help and give other people with the condition the confidence to say, you know what, I鈥檓 going to go to the cinema.

EMMA-听听听听听听听听听听听听听听 Finally John, how have things changed for people with Tourette鈥檚 now? Do you think people with Tourette鈥檚 have a better time now than when you were young?

JOHN-听听听听听听听听听听听听听听听听 I would have to say it鈥檚 got a lot easier. People with Tourette鈥檚 feel more comfortable around others in society I think, they feel that there鈥檚 a level of understanding and a level of knowledge about the condition. Back in the 鈥�80s nobody knew what the heck Tourette鈥檚 was. The paediatrician that eventually diagnosed me didn鈥檛 know what it was.

EMMA-听听听听听听听听听听听听听听 Okay. So, because of your work and others鈥�

JOHN-听听听听听听听听听听听听听听听听 Because of the work I鈥檝e done over the years it鈥檚 heightened the awareness and it鈥檚 brought Tourette鈥檚 into the family home, onto the TV of these families into the country that we would never have got if it wasn鈥檛 for that very first documentary, John鈥檚 Not Mad. And I鈥檓 so proud and glad that I chose to initially get involved with that project. It鈥檚 been amazing.

EMMA-听听听听听听听听听听听听听听 It must have been a terribly difficult project to get involved in, but we鈥檙e very glad that you did it too. And everybody鈥檚 going to be watching the I Swear film on the big screen and on their tellies later on. John Davidson, it has been an absolute pleasure having you on Access All.

JOHN-听听听听听听听听听听听听听听听听 Thank you.

EMMA-听听听听听听听听听听听听听听 And thank you for sharing your story and your wisdom with me. If you can relate to John Davidson鈥檚 story or if you鈥檝e anything else to tell me please do get in touch. You can email accessall@bbc.co.uk. You can send us a WhatsApp, a voice message or a text message 0330 123 9480. Or you can find us on social media @麻豆社AccessAll. Thank you so much for listening and I鈥檒l see you again next time. Bye.

JOHN-听听听听听听听听听听听听听听听听 Bye.

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