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1st October 2025

bbc.co.uk/accessall

Access All – Ep 180

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, I’m Emma Tracey, and this is Access All, the ³ÉÈË¿ìÊÖ’s 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’s who has coprolalia, which means that sometimes his tics are sweary. ÌýAnd also some of his tics can be unintentionally inappropriate.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý If you like what you hear please subscribe to Access All on ³ÉÈË¿ìÊÖ Sounds.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý John Davidson has been the poster boy for Tourette syndrome since 1988 when a documentary about his extraordinary life, called John’s Not Mad, was aired on ³ÉÈË¿ìÊÖ 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’t understand the condition. Thirty-six years later we’re much more aware of Tourette’s, and that is in no small way down to John. He has been in four more documentaries, he’s campaigned tirelessly, and he’s helped many, many young people with Tourette’s feel better about themselves. John’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi, how are you doing?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m really well. how are you today?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m doing really, really well. It’s been a busy last couple of days, full on doing media stuff.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It must be a bit surreal to have a film out that’s about you and your life.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is massively surreal. A bit overwhelming at times; it’s been an absolutely massive process.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you’ve been really involved?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’ve been really involved, yeah. I’ve been credited with executive producer on the film.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Fancy.

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s the director.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The director, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s hear a little clip from the trailer:

[Clip]

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý John?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Whistles]

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

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

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Tommy, this is John, he’s come to have a chat about the vacant position.

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

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

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can see he’s off the medication.

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t think you are okay.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t think Tourette’s is the problem. People not knowing about Tourette’s is the problem. Educate them.

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

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] gosh, there’s loads of funny, funny bits.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There is yeah. I mean, there’s sad bits, there’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I hope it’s okay but we’re going to talk about all of those now.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’ll start, I think, right at the basics and talk about Tourette’s. People know a bit more about it now. Lewis Capaldi lives with it, so does Billie Eilish, and they’re talking about it, openly talking about it. But you’ve made it your life’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Tourette’s 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’s 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’s no guidelines, NICE guidelines, there is no clinical pathway for a GP to know where to send a family.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, that’s 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’s hear a little bit from that:

[Clip]

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Sometimes I think that I say them because I know they’re disgusting and I know that somebody’s going to get angry about it or turn their back about it. When I think of that it just makes me worse. That’s exactly what my mum thinks as well. And the noises as well, I know it’s going to annoy somebody, but I just can’t stop myself from doing it.

MUM-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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 – not deliberate; it was all involuntary. We didn’t know that at the time though. We didn’t know what was happening with John at all. In fact we thought he was going mad.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh John, what’s it like to hear that back?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Quite emotional.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And it’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I find that if I’m 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Interesting. So, that helps?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý These exacerbate the symptoms I feel, yeah. But I think that comes from one of the associated conditions that come alongside Tourette’s 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’s so many other parts to the condition that we don’t see or hear.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, that’s all people seem to be interested in.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s all they say.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And that over the years has created such a stigma for people who have Tourette’s that don’t have that part of the condition called coprolalia. And people get frustrated because someone will say, ‘Why do you keep making those movements with your neck? And they’ll say, ‘Oh I’ve got Tourette’s’, and people are saying, ‘No, no, you can’t have Tourette’s, you don’t swear’. And it’s like, you know, it’s not about swearing all the time.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Exactly, yeah.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý When did Tourette’s start to come into your life?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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’ve always been quite loud, and I think that’s 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. ÌýÌýÌýÌý

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, very, very inappropriate, unintentionally very funny as well. Sometimes the way a Tourette’s mind works is our mind works so quick so constantly the whole time we’re in a place, we’re scanning round the place looking for information, looking about. We notice things that we shouldn’t really need to notice, so it’s like everyone, everything is overloaded, sensory overload.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, what does it feel like when there’s a tic brewing?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý When there’s 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’re beautiful.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, when it’s brewing you don’t know what it’s going to be?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t know what it’s going to be, no.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you can’t stop it?

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý For me listening to you and not looking at you it’s very easy to know when it’s a tic and when it’s not.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hey! Right, yeah.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. The whole time my right shoulder’s been ticking.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right. I have no idea.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý My head’s ticking to the right hand side.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That must be exhausting.

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Like what?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I get muscle strains all the time, I pull muscles. I’ve 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’t even want to leave the house some days.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because you just can’t deal with people’s reactions?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, and it’s people’s reactions that determine how I deal with it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’ve been dealing with this 40 years now.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s very unusual to talk to an older – I shouldn’t call you an older person.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I am, I’m 54 now, I’m getting there.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A middle-aged person?

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

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý As a slightly older person in my workplace I’m very conscious that there’s 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’ll make sure I’ll stay out of the way. I don’t want the children to hear horrible, nasty swear words. I know that it's involuntary but it’s just me as a person, I don’t 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, you balance that out.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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’s, and they knew it was involuntary so there didn’t seem to be an issue. But if I was to go, just walk into a school to do a talk about Tourette’s I need to make sure that these children are able to understand that it’s involuntary, and that they will grasp the fact that I don’t mean to say what I’m 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, ‘What’s it like to have Tourette’s?’ so they want to have a dialogue about it and talk about it, so I’m very open to do that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, it’s worth doing?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, yeah.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The effects that Tourette’s 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’re 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’s like an explosion as they come through the home door. If you imagine every time you want to blink your eyes, say you’ve got a bottle of fizzy juice, every time you blink your eye you shake the bottle, after 20 or 30 times you’ve done that and then you open that lid the pressure’s 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’s almost like they’re trying to release all these back out.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But very harrowing for them that time.

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

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re not just a podcast. Find Access All on social media and read our articles on the ³ÉÈË¿ìÊÖ News website.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s talk about the film and talk about when you were a young person, [laughs] when you were in your teens. It’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you know the worst time really for someone with Tourette’s when you’re 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You had a teenage brain.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And a teenage brain, yeah, definitely, that’s what we need to think about.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A teenage boy brain.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, so it was very, very difficult because I felt compelled to shout things out, and I knew that it wasn’t the norm, kind of thing. And I tried so much, I was fighting it all the time.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They weren’t dealing with it very well. In the beginning it was quite a bit of a shock, they didn’t 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’ll go away. And that wasn’t the case. We were then told after diagnosis that it’s a lifelong condition, and understand it and understand who you are.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý School didn’t deal with it very well either it sounds like.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý School were terrible. School were awful.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What did they do?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They did not understand. Some of the teachers it’s not that they didn’t understand, they didn’t want to understand, it’s like I haven’t got time for this, if I’ve got to teach 30 odd other kids, you know. And it was like every time I walked into the classroom the teacher would say, ‘Right 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’ 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow, in a cupboard!

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So that I wasn’t 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’re wanting to save some money, let’s cut disability benefits. Most people with Tourette’s I would say we want to work. There are some of us that aren’t 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’re just sponging off the system and stuff. And it’s like no, you need to really understand and focus on how difficult it is to live with a condition like Tourette’s or any disability really. And I’m hoping that this film is going to change things so much that we’re going to move mountains with this I think.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s 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’ve got all those things to deal with.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s right, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And in your early 20s the film cuts to that where you’re 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý As an adult it got a little bit harder because when you're a youngster and you’re under 18 you’re 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, we often hear this on Access All, kids get support, they’re in a children’s hospital when they go in, they get different doctors. But when they’re adults they A, have to suddenly make their own decisions, but B, there’s not the same support for a condition that’s seen maybe as more of a childhood condition.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Exactly, you’ve got that right down to a tee.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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, ‘Want to join me up the road to the house?’ I went, ‘Aye, aye, I’ll come with you’. So, we’re walking up the road and we got to Murray’s and Dotty’s house and Murray says, ‘Just come up’ and I was like, ‘No, no, I’ll just wait here’. And the next thing I heard this voice shouting out the window, shouting, ‘Mr Davidson, we don’t bit in here you know. Do you want some food? Do you want some spaghetti Bolognese?’ and I went, ‘No, no, no, no’. Then the next thing she says, ‘What’s wrong with my spaghetti Bolognese then?’ So, that was the connection, the initial I was frightened to go in because I’d never met them before, I didn’t know how Dotty and her husband were going to accept and understand my condition. But right from the word go they’ve 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’d been through so much with me and they were struggling at that time; mum and dad’s marriage was starting to break down. So, things were quite difficult. And I met Dotty and I said to someone it’s almost like I’d been reborn.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow, that’s massive. Because she used to be a mental health nurse, right, so she had experience of the medications you were on, people who wouldn’t maybe behave as you would have thought.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She said something really – if it’s real life, but it was definitely in the film – she said, ‘In this house if you do something you can’t help you never apologise for it’.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is that the first time you’d ever heard that?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It still wasn’t easy.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It wasn’t easy, no.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There are so many relatable things to disabled people and people with learning disabilities as well where you did something you couldn’t help, a tic you couldn’t help while you were out and about and you’d get beaten up.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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’s, I knew I can’t be the only person with this condition. I was told it was rare at the time, but now 2025 there’s over 400,000 people in the UK living with Tourette’s today; that’s one in 100 schoolchildren. So, back then it wasn’t that it was rare, it was because it wasn’t known about, nobody understood or recognised the symptoms which could lead to a diagnosis. Ìý

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Tell me about some of the work that you’ve done?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, as I said earlier, I’ve 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, ‘Do you think if I started helping at the youth club that it would be a way to educate children and young people about Tourette’s?’ And he said, ‘I don’t know, but give it a go. Come along on Tuesday night’ 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’re an amazing bunch of youngsters. And it’s dead sad because so many youngsters as they’re growing up get a bad name, they’re 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because of the education you did with them as well though.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, yeah.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s taking me to a world stage and talking to so many more people about the condition. It’s not just going to raise awareness I believe; I believe it’s going to become a movement, it’s going to become a catalyst for other people with Tourette’s to join on the campaign and get awareness out there and get more understanding out there and get people talking about Tourette’s. We need to encourage people to talk about Tourette’s 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’s. That was a Prime Minister that came out with this.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And these clangers still get thrown in.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And there are still clangers that get thrown in today about someone’s using bad language, oh have you got Tourette’s or something, and it’s seen as a joke. It’s something that so many people have thought it’s okay to do. And I’m 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’s damn well hard, it’s not easy. And what we don’t need are comedians, politicians, and we don’t need people criticising and laughing and mocking the condition. Because I just feel that we’ve not been given a fair hearing, if you like, in the early stages of the media stuff that I’d previously done. People think it’s okay to go online and mock the condition, make fun of the condition.

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, definitely.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They were yeah. And a lot of them were within context of what I was seeing on the screen.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

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

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Definitely.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But the one thing that’s interesting to me is Robert Aramayo plays you and he did loads of research, he went and stayed near you for ages, didn’t he, and watched you and everything. He doesn’t have Tourette’s. What’s your thoughts on that?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý For someone who doesn’t have Tourette’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, he had to look right, didn’t he?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because when I first me Rob I said to him, ‘I take it you don’t smoke?’ ‘No, no, it’s filthy, disgusting’. 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’s done an absolutely amazing job.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But couldn’t someone with Tourette’s have played you?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because the script, you can’t script the tics, you can’t. 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’s an absolutely fantastic scene…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a tic fest.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …it’s a tic fest, and the script was requiring Andrea to tic at a certain time within the lines. And that’s just not how Tourette’s works. So, what the director allowed was for Rob and Andrea to just improvise. So, Rob started off by starting to tic, Andrea…because when you have two tickers together we set each other off.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, you hear someone else tic and you’ll tic?

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And show the correct joy.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And the authenticity as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, is there a Tourette’s joy then?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There is, there’s a massive Tourette’s joy. And I’ve always said to the young people, and I think I say it in the film that when we come together as a Tourette’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, it’s a relief and a release?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a relief, so that when you’re around people you feel that you’re able to tic, you’ve not got this trying to suppress the tics and hold them in. You just feel that you’ve got free rein. And the night at the cinema I cried because everyone else in the cinema that had Tourette’s felt able to tic and felt that they weren’t 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, would you go to the cinema as a rule?

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’ve 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, it was a big moment even for that?

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

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

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would have to say it’s got a lot easier. People with Tourette’s feel more comfortable around others in society I think, they feel that there’s a level of understanding and a level of knowledge about the condition. Back in the ‘80s nobody knew what the heck Tourette’s was. The paediatrician that eventually diagnosed me didn’t know what it was.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, because of your work and others…

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It must have been a terribly difficult project to get involved in, but we’re very glad that you did it too. And everybody’s 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And thank you for sharing your story and your wisdom with me. If you can relate to John Davidson’s story or if you’ve 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 @³ÉÈË¿ìÊÖAccessAll. Thank you so much for listening and I’ll see you again next time. Bye.

JOHN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Bye.

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