WEBVTT
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Uh everyone thinks about Tourette's as a swearing disease, and it's not.
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Only one in ten of us have coprolalalia.
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Coprolalia is not actually about swearing, it's the use of inappropriate language that we can't control.
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I am that one in ten.
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But nine out of ten is motor ticks and a verbal.
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Verbal not being vocal not being a word but a squeak or a click or a sniff.
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But the physical side of Tourette's can be disabling and crippling.
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When you sh when your shoulder shrugging non-stop and you can't stop it for days on end and it ends up bruising and muscle tension and full tendons.
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When you can't sit still for an MRI scan and they can't do anything about it, there's when you're eating and you can't stop shaking or stabbing with your knife.
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There's there's so many things Tourette's affects that it changes.
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So many things we have to think about going to a steakhouse.
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We have to think about having a butter knife and not a steak knife at first because I get too stabby with them.
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Tourette's is a minefield that people don't understand.
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It's for me, it's laugh with me, just don't laugh at me, is is is the thing.
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Because when we obviously we we met at the uh whole champions meeting at the beginning of the year.
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And I think what they were talking about baby swimming lessons.
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Yes.
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And one of your ticks then was about drowning the baby.
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Yeah, drown the baby.
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Now I I know you're not thinking about drowning the baby.
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Of course not.
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And you had to apologize for that one.
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And like everybody laughed at first, and afterwards, I don't think people were laughing.
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And it wasn't because it wasn't funny, but it was just obviously you can see that it was even you saying that was even uncomfortable for you to say as well.
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And I think everybody realised that pretty quickly.
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But it was funny towards the end of the meeting when you called the chair a pedo.
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Do you know that that one I that one I that one I laughed at?
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So that was I guess not I again, you're the first person with Tourette's I've ever met.
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So in terms of my my question, I I was often thinking when you have these ticks, are you thinking these things?
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Like when the you know when the producers left the room and you're told to fuck off.
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Yeah, no, was you actually thinking fuck off?
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No, absolutely not.
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So um kind of tell me a little bit about that then.
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Ticks come for me personally, we all get a slightly different build-up or a different urge, it can vary through the community.
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For me, if I try and hold a tick in, it's like my it's like electric running through my body, my muscles tense, and suppression is really difficult.
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But ticks are triggered and they're relatable.
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But the way I describe it is if someone was born completely blind, explain the colour blue to them.
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You can't do it.
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And so to explain the urge and how it happens to someone that hasn't experienced it is really difficult.
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But what I like to say is we've all had intrusive thoughts, it doesn't matter who you are, you've walked down the street and at some point you've judged.
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You might not ever say it out loud, but you might be looking at something or someone and have a thought, but you would never say it.
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We all have a different part of our brain that we can't control.
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We breathe every day without thinking about it.
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Our brain controls that breathing, our brain controls us blinking.
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We don't think about it, we just do it.
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There's so much we don't think about.
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And the brain is a powerful thing, a really powerful thing.
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So for those intrusive thoughts to sort of bypass the signals, if you like, and come straight out of the mouth, as much as a natural thing occurs, like a scream, if something happens to you.
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Say you trap your finger in the door of the car, we can't suppress going out or whatever happens.
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It's as natural as that.
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You don't think about it, it just happens.
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It's literally like that.
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It's not necessarily a thought process.
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Occasionally it can be anxiety-driven.
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Anxiety makes ticks worse, tiredness makes there's so many environmental factors that impact Tourette's.
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But it's also relatability.
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Anyone that looks like a social worker to me normally gets the pedotic.
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That's what happens at champions.
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Okay, yeah, yeah.
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Baby, the baby things that was I'm glad people laughed because it took the edge off it.
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Yeah.
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I don't know if you noticed, but halfway through that meeting as well, I punched my cup and it ended up in the middle of the room.
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Oh, yeah, I remember that.
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Yeah, yeah, yeah.
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I remember that one knowing.
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I get really punchy with things and touchy.
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If it's there, my ticks see it, you know.
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Yeah, yeah, yeah.
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But the urge is almost instantaneous.
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It's it's sort of urge tick gone.
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It's it's really quite quick.
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There's no much not much of a warning.
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Half the time, I don't realise what I'm saying until it's already coming out of my mouth.
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Yeah.
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But we need to get rid of the stigma, and a lot of the media hasn't helped.
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There's been some phenomenal documentaries from um people like our Johnny Johnny Davison.
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John did John's Not Mad, and that was in the late 80s, early 90s.
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That was the first ever documentary on TV about Tourette's ever been seen.
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And he followed it up with I Swear I Can't Help It, and he's done a few others, and they were fantastic educational documentaries that were brilliant.
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But then more recently, there's been other documentaries that have been really damaging to our community because the producers have edited it in such a way to be shock value.
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That's not what we want.
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We're not about entertainment, we're about awareness.
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Yeah.
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So, in terms of like racial or ethnic slurs, or in the company of like I suppose the very people that'd be offended by such words.
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Yeah.
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But normally it's quite topical, like yeah, ticks can be aiming.
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I I I see someone BAME, and I say 90% of the time a racial tick will come out, and I'm yeah, I hate it because I was in foster care with black twins.
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We we were fostered at the same time.
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I saw them as my brother and sister.
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I didn't see a difference in skin colour, we were just humans, and so to get racial ticks brutalises me.
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Yeah, yeah, they're really difficult to deal with mentally for myself, let alone anybody that's on the receiving end of one.
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I never mean it.
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Of course, yeah.
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And I think this is in terms of the awareness if people do.
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Can I stroke your beard?
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If you want to.
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And do it by all means.
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Yeah, you can do.
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But yeah, I can I can imagine.
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Do you know what you said?
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Sometimes you you can go home and you can cry about what you've said as part of these ticks.
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I imagine the sort of racial slurs and things like that.
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Then they must be the harder ones.
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Because obviously you don't want to make anyone feel feel that way.
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Of course not.
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Yeah, it's horrible.
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It really is like really horrible.
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I suppose what can what can people do to be more supportive than understand of individuals with with Tourette's then?
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So the first thing is understand that it's a brutal condition.
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That it's not something there to we need to get rid of the locker room jokes.
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Yeah.
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It's not something that anyone ever choose because it's a condition that's disabling, it's tiring.
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It's it's oh my squeak.
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My squeak really takes it out of my throat.
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I two, three, four throat infections a year just from my squeak because the sore my throat gets, the more the tickle pick on it and keep happening.
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But yeah, be understanding.
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Don't judge us.
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Don't laugh at us, laugh with us, but don't, you know, if someone's there and they're quite obviously struggling because of neck jerking or twitching or whatever, that's not something to stand and laugh at.
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No, someone in distress.
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Yeah, absolutely.
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But people do pick on that.
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Yeah, particularly people in school and college and whatever, people get bullied for Tourette's, and we need to get rid of that.
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We need to gain understanding and get rid of it.
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If you're an employer or a business, approach whatever charity is local to you.
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So for Hull and Yorkshire, it's TIC, which I volunteer for.
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Yeah.
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Tick Yorkshire is our domain, and then nationally, there's Tourette's Action in Scotland, there's Tourette Scotland in Manchester, Tourette's Manchester.
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There's organisations all over.
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Call us up, email us, book us in for training.
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Learn about our community, learn about our condition, learn about what you can do.
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Because it doesn't cost you anything but maybe an hour of your time.
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Of course, yeah.
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But to us as a community, we appreciate it so much.
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