Language warning: Strong language used in this podcast.

Content Warning: Please be advised that this episode contains strong language and discusses suicide. If you are having thoughts of suicide, feeling suicidal or have concerns that someone you know may be at risk of suicide, please contact Lifeline on 13 11 14.

"...If you don't get out and build your bridge yourself, you'll never get anywhere..."

This month, our Sunflower Conversations Podcaster in Australia and New Zealand, Peta Hooke, interviews Leighton (Uncle Tics) from New Zealand talking about Tourette's Syndrome. Leighton discusses his experience with public opinion, employment opportunities and having the courage to try new things.

Tourette Syndrome (Tourette's) is a neurological condition that causes individuals to make involuntary vocal noises and movements called tics. Swearing or saying inappropriate things only affects 10% of people with Tourette's. For more information about Tourette's Syndrome, please visit here.

Leighton also raises some potentially confronting issues. Please contact Lifeline on 13 11 14 for support if you are experiencing a personal crisis or have suicidal thoughts. You can call them 24 hours a day.

The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities. 

A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.

If you want to share your experience, get in touch with us by emailing us here.  



Uncle tics.mp3

Peta [00:00:00] Before we get started, I just want to let you know that on this episode, Leyton aka Uncle Tix and I talk about some heavy stuff. So if you're struggling at the moment, I want to remind you that there's always lifeline. If you're in New Zealand, you can call 0800 543354. Or if you're in Australia, of course, you can call 13 1114. Look after yourselves. And if this episode isn't right for you, maybe skip this one.

Peta [00:00:38] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non-visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.

Leighton [00:01:45] My name is Uncle Tics. I hail from a little place, in Altidore, New Zealand, called Otorohanga. And I fucking cracker of a  little place, and I've Tourette's and I swear and make funny sounds.

Peta [00:01:59] It's lovely to have you here. I know you have a huge, huge following on both TikTok and, you know, across Instagram, but I was introduced to you as Leighton, so I'm going to call you Leighton for the rest of the conversation. So what do you think people most, misunderstand about Tourette's? Leighton?

Leighton [00:02:20] There's heaps, heaps of Stig's. Stig's. I call them stigs. Stigmatism is around it. Heaps of. Shit that people, they always think that we swear when it's completely incorrect. 10% of the population of Tourette's swear. So it's a very small, minimalistic, thing. I'm one of those 10%, so I'll call you a C**T right to your face, which I can't help. That pisses me off and people think we do it on purpose when I don't. I wish, I wish I could stop but no. Yelling the N-word on the street isn't isn't very nice. So yeah, I wish I could stop sometimes, but yeah, that's it, that's it. That's my little pet peeves about it.

Peta [00:03:05] Do you sometimes feel like you're unsafe because of your Tourette's?

Leighton [00:03:09] Nah, because everyone recognises me now.

Peta [00:03:12] Oh. That's helpful.

Leighton [00:03:13] So prior to it yes, very much so. I used to get quite overwhelmed and, like, a bit anxious about shit. But I couldn't give a fuck that I couldn't give a shit.

Peta [00:03:24] So apart from the swearing, is that sort of the main challenge, or do you think it's just people just not fully understanding what Tourette's is and the fact that you can't control it?

Leighton [00:03:37] It's a bit of both. It's pretty much the fact that I can't control, and people are just ignorant to themselves because they're like, what an absolute prick he is. Oh sorry I've got disability. I've got Tourette's. And they are like no you don't. Well, then, bugger off then you know, people are just ignorant. Yeah.

Peta [00:03:53] So before you were doing social media, what were you planning to do with your career? Because I presume that can be quite challenging as well.

Leighton [00:04:01] I worked at Countdown or Woolworths for ten years. Which is pretty cool. I worked on checkouts, so I'm a big believer in if you don't get out, build your bridge, and do anything yourself, you'll never get anywhere. Yeah, even with my disability and other things, I still did it. And I probably just sort of still kept on working at countdown, to be honest. Woollies. I did get into videography though, halfway through, like being in my teenage years and and took off for me and then toured with DJs. I still do now, but yeah, probably working at Woollies and and being a full time videographer. Yeah, two job bro. Paid bills trust when I say that.

Peta [00:04:44] Nice. I like someone that is really determined and motivated and you're clearly that person.

Leighton [00:04:49] Oh, I try to be man. I think for anyone that's listening to this or looking at it, yeah, you might suffer. It might be hard. But fuck give it that extra shot. Get out there, go for a walk, get out there, try and get to the supermarket. Even though you struggle and you can't just put yourself in awkward situations to give yourself that. Oh, fuck, that was really cool. You know, that good relief of, like, I can do that again.

Peta [00:05:12] Yeah for sure. Which makes it sort of fascinating to me that we're here talking about the Sunflower lanyard. So when do you wear the sunflower lanyard, and how does it help you?

Leighton [00:05:24] I tend to wear it when I go out to big events. Everyone knows who you are, but at the same time, not everyone does. So it's ignorant for me to assume that everyone knows who I am. So you have to wear it every now and then. I don't every time. Maybe once a week, maybe a couple times a month when I don't feel happy on that day. But in New Zealand, the malls, not every mall or not every cinema is understanding. It's not like the UK or Australia or other countries. I feel like some parts in our country lack it. So I guess that's why we're having this conversation. But yeah, I will wear it to like cinemas and malls and heaps of shit like that, to make it easier for me. And if people ask what's that? I'll be To be like it's disability lanyard. Oh, cool. I've never seen one of those. It's like a ripple. Ripple effect, everyone no fuckin knows what it is, you know? I've spoken about a few times on my on Instagram and TikTok, and they're on my stories and I've generated like. 60,000 plus views on a day like big views.

Peta [00:06:24] As I say, you have an awesome audience and the way you connect with the audience is such, an amazing skill. A great thing that you can do. I really admire your skill to do that because it's not easy, despite what people think, to to connect with an audience. Why do you think people love what you do so much?

Leighton [00:06:47] I like to see myself as a bit of a comedian. I know it's a bit ignorant of me to say, but I like to make people laugh, so I think that's why people can relate so much with me. I think they can relate to someone that's like, oh yeah, he's a Māori. He's just an average guy who's a bit louder. You know, I still shit,  sleep, eat and do all the rest. So yeah, just I guess I'm someone that they can relate to. Something I've never spoken about to my followers, but. And you guys can post this everywhere I struggle sometimes to go toilet. Because I can't sit still enough to to. And I keep standing up. So I'm just like I'm busting to go for a piss or shit. But saying like, sometimes it's good to sit down and piss boys and just let you know, that's quite rewarding. But, you know, sometimes I'm trying to take a poo and it's just like, fuck, this is. That's a shit. No, pun intended. This is very hard. I'm up a creek without a paddle, you know? So yeah, I struggle sometimes with that as well.

Peta [00:07:43] It's all the things you. Until you start talking to people that you like. Oh, I've never thought of that, but that makes total sense, you know.

Leighton [00:07:50] Yeah, well, that's everyone else's privilege.

Peta [00:07:52] Exactly right.

Leighton [00:07:53] Because they'll never have to suffer like, or feel the way that we do because of it. It's fucking. It's someone else's privilege.

Peta [00:08:01] So when you do wear the sunflower lanyard, how does it make you feel when people recognise what it is? And know how to, you know, help you accordingly if you need help.

Leighton [00:08:12] I go to more in the UK abroad than I did in New Zealand because again, it's very new here. And but a great initiative. In the UK, for example, I'd go to a fucking airport. They would rush me to the front of any line and push me through. Not only did they rush me through, all of them recognised me so fucking that. That was all massive, like deal sealer for me. Like fuck that's mint. And and they have disability lines. They have disability lines. Like in Berlin. At the airport, you walk in and there's a disability. Big disability. Fucking screen right there with a lanyard on and Deutsch and English. And you're like. Oh. That's cool. And it says 'this way'. And you look down. There's a big ground with all the flowers you can walk down, and you bypass 5000 people and run down your own little line. That's amazing. Like that. That to me, that's recognising it like to the most potential. I think Auckland Airport needs to do it more. Not just throwing them under the bus. They don't have lines like that. They need to have specific lines. It's like disability awareness things here. Please hit this line because I always, always get missed out on those lines and have to stand with everyone else and yell bomb! It's just easy for everyone. It's easy for my missus because now she doesn't have to fucking stress out about me yelling the N-word at this black person over here. That this Asian fellow over here, or bomb in a fucking line in the airport, you know, it's just way easier. So, yeah, getting me, getting it, making it faster is. It's a cool thing.

Peta [00:09:56] So I'm hearing that necessarily the lanyard. You don't use it so people can come and help you. It's just purely a recognise so people recognise you have Tourette's.

Leighton [00:10:08] No, I don't need help. I do my own things. I feel I'm not that I feel I'm not that needed or in need of that assistance. I think that's for other people. And it goes for a lot of things in life as well, like my ADHD as well. I feel I don't need that much help. For all my OCD, I, I, I have a new coping mechanism to sort that shit out. I'll go stop. I will literally yell it and my whole brain stops and I go back to trying  to smash it and do it. And it works. It works for me. So, you know, I give that advice. If you guys are feeling down like that or feeling it out there, give that a go. Just tell your fucking body to stop, sit there, have a drink of water, cold water, get back into it. If that's what I that's that's my coping mechanism.

Peta [00:10:53] When when we go back to you as a younger person, what made you feel the most supported and safe? Because like, obviously like you're a guy that's, like, totally aware of your disability, you know how to handle it. You're you're, you know, pretty chill with it all. But looking back, what were the things that really helped you get through?

Leighton [00:11:14] It was my Mum and my Dad and my Grandparents. As for like school in that there was no support for anything like like us in like the long. Long run. Anything like that because it was so it's not new but there's no there was no support like there is nowadays for kids. So saying that support mechanism and system out there is amazing now. Like when I was nine years old. I didn't want to be any more sick of being bullied. I wanted to kill myself. Jump off the first bridge I saw. You know, highest bridge. I could have put myself out of that misery. But I'm so glad I didn't. Because now I get to spread the word and this is my full time job. So. And have fun with it at the same time. So yeah.

Peta [00:11:59] Sometimes it can be hard to think of a future and like, I really feel sorry for little Leighton. Like it's going to be a rough thing to live with.

Leighton [00:12:09] I feel sorry for him as well.

Peta [00:12:11] It's a credit to you and your family that you do get through. Where do you hope or where do you wish the sunflower lanyard was when you were little? That might have helped you and not get to that dark place?

Leighton [00:12:24] Well, schooling. Schools. Most schools understood it. You know, I actually think I thought of a good idea the day that. That I could pitch to your boss, your bosses, and, like me going on, like, a nationwide tour and just spreading the awareness about it, you know, getting funding from something and then pushing it. That would be huge.

Peta [00:12:45] You're the guy to do it Leighton.

Leighton [00:12:47] Well, it'd be me or a few other people in New Zealand. They have disabilities. Like, it wouldn't just be me, it would be a few others. But it would be a really good initiative to start with, to go around all the Motu and all the country and do that. That's the only way to get into it, as is through your kids. Because they  just talk. That was no initiative. When I when I first started up, I didn't want to showcase my my Tourette's because I was scared of the backlash. But then I just said, fuck it, what have I got to lose? You know, maybe a few, a few school mates that go 'oh, he's faking it'. Who the fuck are those guys anymore? Nothing. Still sitting at home smoking weed, doing fuck all with no jobs. So it's like having an initiative to just actually push it was was one thing. So. And then it became a school a school lunch time yarn. Do you have you seen this Uncle Tics guy? Yep. You might have some kids out there mocking my tics and repeating them in in the schoolyard. But that's a win for me because people are fucking talking about the disability. You know what I mean? People are out there doing that. So, yeah, that was a humongous win.

Peta [00:13:50] Have you had an experience where somebody really understood your Tourette's? We thought, this person really understands what Tourette's is.

Leighton [00:14:05] I get it most days, to be honest. I remember the very first, very first time I was like. I was at a pub in London. This is like the first memorable time I can pop out for me. And then I was ordering a beer and the guy was like, oh, I don't think I could serve you this beer sir. So you're you're a bit intoxicated. I was jumping around like this and moving around. I have a few who's and ha's from me.  And I'm like Oh, shit. Sorry cuz I've got Tourette's bro. And I reach out in an out of my pocket. I bring the lanyard. He's like. Fuck. What do you want? It's on me. I was like, you're a good C**T. Could I have two of these beers? [Luaghs] but it's like that, you know what I mean? That was a real memorable one for me because he was like, oh, I'm so sorry, man. I've actually had a couple of times happen in bars, which is quite funny. But, you know, fucking people are just real people that understand it's like fuck! Do you want a beer? Yeah it's awesome. 

Peta [00:15:09] For those people who haven't come across Tourette's before and come across someone that isn't famous like yourself, that does have Tourette's. Do you have any advice on how to be the best sort of support for person with Tourette's?

Leighton [00:15:26] My  thing would be don't make it a big thing. Like if I'm out there yelling, [squeals] I say I do that and I'm standing in a fucking supermarket. Don't come up and ask me if I'm all right. I'll tell you if I'm not all right. And I need help. So it's all good. And most of us will probably agree with that. If if you need help, you can ask for it. Unless the person is physically asked. This is with Tourette's, hey. I need some help. Then you  go and help. But otherwise, as you were about your day just doesn't need to be a big deal. That's. That's how I would approach it. And then I'll do the same with other people, with the lanyards. If they do their thing or they're out and about, or they just standing there and they're frozen. And their friends are standing around them and you can see that they're suffering. Just walk on by. Leave it be. Smile. Or, ask a friend. They're all good. Yep. Sweet. Oh. Oh, good. Walk on. You don't need to make a big deal out of it until they have spoken about it.

Peta [00:16:27] Every disability is so different and I appreciate that that's specifically for Tourette's because that's what you can speak on. Where would you like to see the sunflower program adopted next?

Leighton [00:16:40] Everywhere in New Zealand. Schools. I don't know if they have done it, but everywhere. As many places as you can. The more the merrier. Yeah. The more information we get out there on this, the better can be. You know what I mean?

Peta [00:16:56] And that's another episode for Sunflower Conversations. Don't forget, you can always connect with the sunflower between episodes either via our website HD via our Facebook hidden disabilities ANZ or via Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.