Tourette’s Syndrome is the topic of the latest episode of The Level Playing Field Podcast.
The episode can be found here, or via your chosen podcast platform and the full transcript is available below.
Advocacy Lead for Tourettes Action, Ione Georgakis shares her personal experiences and professional expertise. You also hear from Neve, a young sports fan who speaks about navigating life with Tourette’s and is joined by her mother, Vicky, who holds a position at Staffordshire FA.
Ed shares his perspective of attending matches, as a dedicated Brighton & Hove Albion fan and communicates through British Sign Language (BSL). Ed’s mother, Liz, is on hand to ensure that Ed’s thoughts and feelings are accurately conveyed to our audience.
Your host is Level Playing Field’s fans liaison officer, Liam Bird. If you find the transcript useful or have any other thoughts on the episode, then please get in touch with Level Playing Field.
-Begins-
00:00:00:00 – 00:01:30:00
Liam
Welcome to a level playing field podcast. I am your host, Liam Bird, and I am also the fans liaison officer at the charity Level Playing Field. In this episode of the podcast, we shift our focus towards the often misunderstood world of Tourette’s to help us gain an insight into his nature and how it impacts a person with Tourette’s’ matchday experience.
We have the privilege of hearing from Ione. Ione is not only a person who has personal experience with Tourette’s, but also serves as the advocacy lead for Tourettes Action, a prominent support and research charity operating in England, Wales and Northern Ireland. Joining us as well is Neve, who shares her experiences of living with Tourette’s, accompanied by her mum, Vicky, who holds a position at the Staffordshire FA.
Furthermore, we are joined by Brighton and Hove Albion superfan Ed, who is non-verbal. Ed uses British sign language, BSL, to communicate and also has Tourette’s. To ensure Ed’s thoughts are accurately conveyed, his mum Liz, is also on hand to interpret and speak on his behalf.
So, we start our conversation with me asking Ione to explain to you, the listener, and also to myself, what actually is Tourette’s?
00:01:30:01 – 00:02:49:07
Ione
Tourette’s syndrome is an inherited neurological or neurodevelopmental condition. We use the term sort of neurodevelopmental, because we often see that those tics start to arrive in early stages of development – around the age of five or six. And the key features of this condition are involuntary sounds and movements, that we call tics. Not the little critters that bite your ankles when you go camping, but involuntary sounds and movements and those can be kind of simple. So, they might be things like blinking your eyes or raising your eyebrows, or grimacing, or coughing and clearing your throat. But they can also be super complicated as well. So, they can be like multiple stages of movements. It can be lifting your arms in the air and then waving. They could be touching objects or people. They could be saying full sentences and words – even singing, and everybody’s tics differed.
So, Tourette’s kind of isn’t a rare condition. It impacts 300,000 people in the UK – about 1% of the international population. So, there’s lots of tickers out there, but there’s still – I think we’ve got quite a long way to go until the public understanding around Tourette’s is as as high as the prevalence of Tourette’s.
00:02:49:08 – 00:02:55:23
Liam
Neve, If you don’t mind, could you please share with the listeners about your experience with Tourette’s and how it affects your daily life?
00:02:55:23 – 00:03:07:02
Neve
I developed tics when I was 14, so like three years ago I got the diagnosis of Tourette’s Syndrome last year, like officially diagnosed.
00:03:07:08 – 00:03:09:06
Liam
How did it feel to be diagnosed?
00:03:09:09 – 00:03:19:06
Neve
I think it was like a relief because I’ve had a few misdiagnoses. I was diagnosed with FND, but that turned out to be a misdiagnosis.
00:03:19:08 – 00:03:22:11
Liam
Sorry, can you just tell us what FND is, please?
00:03:22:13 – 00:03:45:00
Neve
FND is Functional Neurological Disorder. It’s like where the brain and the nervous system don’t really work, like in coherence with each other properly. So, a lot of my symptoms did line up with FND. But I’ve actually got something called PANDAS, that is Tourette’s Syndrome, but getting the Tourette’s diagnosis – I think it was like a relief, because it was like an explanation for what was happening.
00:03:45:02 – 00:03:54:24
Liam
Ed, kind the same question to you, Please. Could you please tell the listeners about your experience with Tourette’s and how it might affect your matchday when you go and watch Brighton?
00:03:54:24 – 00:04:27:08
Ed – with Liz speaking on his behalf
I’ve had tics as long as I can remember.
I have physical tics and some vocal tics as well, but they do change a bit over time.
I have no control over them though, at all.
00:04:27:11 – 00:04:32:20
Liam
Has been a situation where abouts you’ve been made hyperaware of your your Tourette’s when you go and watch football?
00:04:32:20 – 00:05:16:24
Ed – with Liz speaking on his behalf
It’s hard for me on a matchday, because when I’m out people keep looking at me and staring at.
It makes me uncomfortable. Anxiety makes it worse and the more anxious I get, the more tics I have. And then that makes it worse.
00:05:16:24 – 00:06:28:02
Ione
Ed, I think you put that really well. That when you tic more, people look at you more and focus on you more, that makes you feel more stressed and anxious, and then makes you tic more. And I feel that that’s a bit of the nature of the beast with tics and Tourette’s. The things you really don’t want to do and say, and the times that you really don’t want to draw attention to yourself, your tics step in and kind of do the opposite.
Unlike Ed, I have a little bit of control over some of my tics. I can do what we call suppressing, so holding in that uncomfortable physical feeling for a little bit of time to stop my tics coming out for a while. But in a space like a sports event, I would find it really difficult to suppress. And that’s because there’s lots going on and there’s loads of excitement and there’s loads of noise and I’m feeling full of energy and there’s lots of people around me that would make me anxious to offend or upset with my tics and again, kind of the nature of tics, means that kind of fuels the fire.
So sports matches are a bit of, I think a unique challenge for lots of people with tics and Tourette’s. But I guess there’s lots of other settings that have the same challenges. Busy, exciting spaces with lots of new faces.
00:06:28:02 – 00:07:15:02
Vicky
I think we find when we’re at an event with Neve, whether it’s football or sometimes we go to golf and golfing events Neve becomes very aware, don’t you? Who you’re around. And it’s almost like the moment she starts with one tic and it gets a bit of a reaction, that just won’t go away and it keeps coming and coming and coming.
So we often have to go and have a few minutes in a toilet somewhere else. Somewhere just a bit quiet away from people, because as much as you try and blend in with the crowd, you just don’t. You know, Neve will always stand out. And whilst it’s lovely having some people around that are very supportive, you will have some people that want to pass judgment and give their opinion on Neve’s condition and that doesn’t help. That then makes me more anxious.
00:07:15:02 – 00:07:17:02
Neve
Hmm, yeah.
00:07:17:04 – 00:07:21:08
Speaker 1
Sorry, Neve’s Mum, can you just introduce yourself? That’s a new voice that people are going to hear.
00:07:21:10 – 00:07:27:10
Vicky
Hello, I’m Vicki. I’m Neve’s mum and I work at Staffordshire Football Association.
00:07:27:12 – 00:07:46:16
Liam
So, Ione. Something that happens several times in a season is a minute’s silence and it’s something that I can only assume can be a nightmare for someone who has involuntary tics. I mean, what provisions can be made to ease a supporter with possible verbal tics?
00:07:46:18 – 00:09:57:01
Ione
It’s a great question, Liam. And, I mean, even you say the word one minute silence makes me feel anxious and slightly stressed. And it’s a really difficult one. I mean, I have very vivid memories of being back in school and in later years, where I’ve literally been through my lip in an attempt to stay quiet in a minute’s silence, to not kind of be disrespectful or to be perceived as being disrespectful, because I guess that’s the challenge, isn’t it?
The idea of a minute’s silence is about paying respect to people often, and kind of remembering and honouring people. But in doing that, we can actually really isolate an alienate those people who can’t access that moment.
I think something really practical that we can do, is if you are observing the minute’s silence, give people a warning. So, ‘at 12 o’clock, we will be observing a one minute’s silence. If you cannot access this, then please feel free to take a break’ kind of thing. Please remember not everyone is able to observe a minute’s silence for many different reasons, not only Tourette’s. So kind of try, try and give that verbal reminder to people to be kind of patient and inclusive.
Some people might want to just simply escape. If I was told that I had to participate in a minute’s silence, I would take myself away. I don’t want to have to suffer for a minute in silence and risk upsetting somebody already struggling. It could probably have quite a big impact on how able I was to manage the rest of the game as well, because I’d use that much kind of stress and tension in that first minute to hold it all in.
But some people don’t kind of want their conditions to be outed essentially. So some people will say ‘we actually have some supporters here today who have Tourette’s Syndrome, but that means it’s really difficult for them to stay quiet’. And that is a great adjustment if people choose that. But lots of people feel that they shouldn’t have to kind of be outed to essentially upwards of thousands of people sometimes, so people don’t raise their eyebrows or get slightly confused. So it’s a really individual thing, but having exits and a space for people to leave, giving people that warning and kind of giving a bit of a disclaimer to everyone to to be slightly more patient and empathetic.
00:09:57:03 – 00:10:19:24
Vicky
I think sometimes a minute’s applause can also be as effective. It still gets, you know, still gets the message across that you’re respecting someone or a situation, but it takes away that silent moment, so people can just be comfortable. Can tic if they have to tic. So that’s another option, I guess.
00:10:20:01 – 00:10:20:10
Liam
Ed and Liz?
00:10:20:10 – 00:10:55:05
Ed – with Liz speaking on his behalf
Yeah. So, that’s what Ed was going to say, about a minute’s applause.
Being silent for me is really hard as well. If there was a minute’s silence, I’d have to ask the steward if I could go out, because I wouldn’t be able to be there.
00:10:55:11 – 00:11:18:17
Liam
What position do club staff and and stadium staff have regarding helping a person with Tourette’s Ione? How much training do you know goes in to supporting club staff to try and create an inclusive environment for people with Tourette’s? And also, a follow up to that. Do you think it’s spoken enough about, when when we’re talking about disability training in sport?
00:11:18:18 – 00:13:37:14
Ione
Two really good points there. Absolutely. I mean, sadly, we have in my career as a trainer on tics and Tourette’s, working for Tourettes Action UK, we have had no requests from sports services, or kind of organisations to run training. So, we’ve obviously been really fortunate to work with you, Liam, at Level Playing Field and to run some kind of internal sessions, but we haven’t yet been asked by some of the kind of, well, any size or scale sports venues, which I think indicates how far we have to come with Tourette’s awareness.
So, lots of international, kind of lots of national organisations have maybe recognised dementia friendly spaces. They might honour the Sunflower Lanyard scheme. They might have had training on autism, but Tourette’s isn’t kind of up there yet. It hasn’t got that status yet. And so it maybe hasn’t got that interest. But when we think of spaces like sports events and the nature of Tourette’s, it feels like we really need to be discussing this.
It can be such a tic trigger. It can be such, essentially sometimes dangerous and risky space for people to access if there isn’t the right support and understanding out there. And that support first starts with staff and stewards, people on the ground, on the floor. The amount of events, whether that is a sport event or a music event or a theatre event that I’ve been to and I’ve had a member of staff standing near me because obviously people have complained or started to say something and I’m really aware of that and it doesn’t feel like I’m being supported. It feels like I’m being observed and judged as to whether I need to be removed or not. And actually, if you know what Tourette’s is. If you’re trained and up-skilled to recognise it, you’ll really quickly be able to spot it and then you’ll be able to manage other people’s concerns really effectively. But you’ll also be able to support people accessing that sport event with empathy and with patients, with curiosity and compassion. And essentially, they’re all the things that people living with Tourette’s need to feel safe.
So, if you run a sports event, company, service and you want training, get in touch with Tourettes Action, because that’s, I guess, the first step in us breaking down barriers to people really, really enjoying live sport safely.
00:13:37:17 – 00:14:00:24
Liam
We’ll put a link in the episode description of people and how they can find Tourettes Action and of course, Ione.
Vicky, I’m kind of interested to know at grassroots level, the FA do some fantastic work across the country at grassroots level, but where where does Tourette’s play into this? is their training going on to make attending grassroots football more inclusive for anyone with Tourette’s to go and watch?
00:14:01:05 – 00:15:46:11
Vicky
I think every county is trying to address it. Certainly in Staffordshire, Neve is doing some training in September and October with our referees, so that they are more aware and they can support a player with Tourette’s or support spectators with Tourette’s, because obviously anyone with Tourette’s has a very specific way as to how they want support. So you might get one player that wants people to know that they’ve got Tourette’s. You might get another person and with Tourette’s that doesn’t want anybody to know. So Neve, you’re doing some training aren’t you with the referees associations? (Yeah)
I think in grassroots in general. I mean the experience that we’ve had when we’ve gone to games…
00:15:46:11 – 00:14:51:07
Neve
I think it’s been really positive.
00:14:51:07 – 00:15:49:11
Vicky
Yeah, I guess we’ve we’ve always made a point of speaking to the manager of the team, or the chairman of the club that we’re going to see, that they’re aware and they’ve always been very accommodating.
So, they often sat us with them. And then you’ve got that element of sort of safety and security, I suppose. When you go down and you stand with the spectators, it can be a little bit of a different environment. But certainly as far as football goes, I don’t think you’ve had a bad experience have you, at grassroots football? (No).
The counties have still got a way to go yet, as far as educating referees, clubs, managers. You know, how to support a player, if they’ve got a player with Tourette’s.
*music plays* Sorry, there’s an ice-cream van in the background – there’s still a long way to go. But we’re certainly making good strides. I think every county FA recognises that they need to really support. So, anybody that wants to enjoy football at grassroots level has got Tourette’s Syndrome.
00:15:49:11 – 00:15:58:01
Liam
Ed, I’m interested to know from you, what advice would you give to any, any supporter who’s listening to this, to to assist you on your matchday?
00:15:58:03 – 00:16:57:13
Ed – with Liz speaking on his behalf
Get hold of a hidden disability wristband, which is what they have where Ed attends his football ground and it tells the stewards.
If I have it on, it make me feel 100% safe, but it makes me feel less anxious. If I don’t have it on, I might have a meltdown.
00:16:57:17 – 00:18:42:13
Ione
It’s a really great point, Ed, And the the value of invisible disability markers is really, really great. You know, using the sunflower lanyards can be great and it’s recognised across the board these days. I know some people use kind of extra things alongside that, so you can get Tourette’s Awareness wristbands from Tourettes Action, that kind of bright green. They really draw attention. You can have an I have Tourette’s badge. We also have these I.D. cards that are kind of explained. You have to have an official diagnosis to get one. It’s got your picture, explains what Tourette’s is, and they come alongside these sort of business cards. And essentially it’s a few sentences explaining what Tourette’s is. And it can be a way that you can give that out and essentially run away without being too dramatic about things. You don’t have to continually try and explain yourself. And if you’re feeling anxious and you’re feeling ticcy, the idea of trying to explain to somebody what’s going on is like a nightmare, really. So if you can use something that takes that away, that can be really, really helpful, something that people can see, some people where their Tourettes Action t-shirts to these kind of events, so that it’s really saying literally on my chest, this is my need.
I do think it’s a shame that we’re in a society and a system that people have to literally wear something that shows the world that they have a difference or a disability, in order to be treated with compassion and patience. However, it’s kind of where we are at the moment and it’s it works, but it’s hard for some people. Sometimes I find it frustrating that I have to do that in order to be treated with compassion, or to reduce the risk of someone becoming upset or offended or challenging me about it.
00:18:42:15 – 00:19:17:19
Liam
Anyone who wants to wear an identifier, these are all personal choices. They should never be mandated by anyone, and they are the person with the disability deciding that ‘yes, I’m quite happy to show this’. But yeah, unfortunately you are right, Ione. Identifiers – we would rather we didn’t have to have them, but obviously they’re a useful tool to to to have.
Neve, I’m interested to know, can you discuss any kind of misconceptions or misunderstandings about your Tourette’s and how you’ve handled them when they’ve even been challenged before?
00:19:17:19 – 00:20:24:14
Neve
Before I answer that, I just wanted to add something about the lanyards. (Yeah)
So, I wear the sunflower lanyard pretty much whenever I go out in public and I feel like, I dunno, it’s kind of a comfort blanket, like even if my tics aren’t bad when I leave the house, if I forget my lanyard, I’m immediately like way more anxious, just because I don’t have it on me and I just like having it on me.
But then I also think because of lockdown and COVID, quite a few people – a big misconception about the lanyard scheme is that it’s like a mask exemption lanyard, because of lockdown. A lot of people used it as like a mask exemption lanyard, so people don’t actually know the true meaning behind what it is. I know, especially when masks weren’t mandatory anymore.
Me and a few of my friends who wear sunflower lanyards, we were still wearing them. And you know, we had even shop workers saying, you don’t need to wear those anymore because masks aren’t mandatory. Like, even the shop workers thought like it was a mask exemption lanyard and it’s not so.
00:20:24:14 – 00:20:33:14
Liam
So how do you think we as an organisation, Level Playing Field, but also sport in general, can kind of educate people about what actually the lanyards are for?
00:20:33:18 – 00:21:43:05
Vicky
I think one thing that pro clubs could do, is advertise the fact that they have sunflower lanyards, because I know within Staffordshire we’ve got Port Vale, we’ve got Stoke City. They have them available, so that supporters that go to the game, if they forget a lanyard and we’ve had it before a few times – we’ve had to go to Tesco. We’ve had to go somewhere that we know have them and the clubs in Staffordshire do advertise it, but it’d be really good if pro clubs on their website can make it very clear that they’ve got sunflower lanyards and then explain what they’re about, because it’s a great opportunity to get the word out there that there’s the support for people with hidden disabilities and they don’t need to feel anxious. Ultimately, they’ve spent a lot of money to go and watch this game. They want to go and enjoy the afternoon. Having that lanyard, or having anything that shows that they’ve got a hidden disability and just need that extra bit of support, can be the difference between a great sporting experience and an awful one that puts them off going to a game again. So, I think the pro clubs could really jump on this and really advertise the fact that they’re supporting anyone with a hidden disability.
00:21:43:07 – 00:22:11:05
Liam
I suppose Ione, the question back to you then is yourself, you also have an identifier. Is that too many identifiers in live sport at the moment? Because, I know several clubs who have personalised club branded identifiers, but there is this sunflower lanyard that’s already out there, that people recognise. So are we confusing the public regarding what these kind of lanyards or pin badges or wristbands are?
00:22:11:07 – 00:23:41:08
Ione
I mean, it’s a really good point, isn’t it? It’s beautiful that there’s an increase in these identifiers and these markers. But I do think that the Sunflower Lanyard scheme are doing it, doing it pretty well. They’re well established. They’re across all supermarkets. Airports do it marvellously. And what airports do really well, is having lots of posters around and stickers everywhere saying we are taking part in the sunflower scheme. This is what it means. And that’s really, really helpful, because it’s not only about staff knowing well what that means, but it’s about patrons knowing what that means.
I think certain disability specific markers can be really helpful. So a big wristband that says Tourette’s- Tourette’s – Tourette’s on it is exactly what it says in the tin. And actually that that tells someone what they’re looking out for.
But I think to standardise it is probably pretty great. It means that people can have one item. They don’t have to go and queue for a team specific wristband at the beginning of an event, which is already a barrier. We’re just saying this exists, it’s free, it’s available. You’ve probably already got one, if this is your experience and we honour that and it makes it easier for other people to spot.
I was out with a teacher the other day and I have my sunflower lanyard on and I live in Wales and she thought it was a Welsh speaking lanyard. So they have one with daffodils that indicates you speak Welsh. And I definitely, definitely don’t speak Welsh, but it’s just one example of how, you know, there’s so many different kind of things out there that they can definitely get confused.
00:23:41:10 – 00:23:43:00
Liam
Ed, did you want to jump in?
00:23:43:02 – 00:24:26:02
Ed – With Liz interpreting
I think wearing my sunflower lanyard really helps massively.
If I’m out and about and I don’t have my sunflower lanyard on me, I get really anxious. If it’s on me, I’m still anxious, but not massively.
00:24:26:04 – 00:24:37:18
Liam
Just coming back Neve, to that kind of misconception or misunderstanding, Have you encountered that and how do you deal with that kind of situation?
00:24:37:20 – 00:27:45:10
Neve
I’ve definitely encountered like misconceptions, so people not really understanding that Tourette’s is more than just swearing. I think a lot of people, if you say Tourette’s syndrome, they’ll just think of the swearing disease. I think that is a big misconception. So that’s sort of the main one, I think for me.
But I was also going to say with the sunflower lanyard scheme. Obviously, sunflower lanyards mean hidden disabilities. So it’s quite vague. You know, if you look at someone with a sunflower lanyard on, if you look at ten people with sunflower lanyards on, none of them will be wearing them for the same exact reason. But what I think’s really good, is obviously at the end of the lanyard, you can attach like a card or something to the end.
So I think that’s good. So you’ve got obviously the Sunflower Lanyard, which is the hidden disabilities, and then like at the end it’s a card that says like Tourette’s in big writing or hearing impairment, visual impairment, like, whatever you have yourself, it’s sort of – the sunflower lanyard is well known for being hidden disabilities. But then you can make it your own by adding whatever you want onto the end.
And then, I was just going to say about – it was only a few months after I sort of first developed tics, I was actually filmed by these two men, like really near my house. I was going for a walk with my friend at the time and we were in this sort of field, foresty type area. I was ticcing quite badly my coprolalia, which is the swearing tic, that was really bad and these men just were geting like different angles of me ticcing, like filming me. So I phoned mum – You came out with my like Tourettes Action card, which, it has like a bit of information about Tourette Syndrome on it and a link to the Tourettes Action website, where obviously you can learn more about it on.
00:26:43:20 – 00:27:45:10
Vicky
We had to call the police in the end for that, because, you know, ultimately Neve’s still a child.(Oh yeah, I was 15 at that point) and they just wouldn’t stop filming, you know, And we tried to explain to them that it’s a medical condition. She’s not saying the word by choice. And they kept saying that it was offending them. And had she learned the language from me, you know, from her mum. I was like, no, it’s you know, it’s really hard sometimes. It doesn’t matter how much you try and educate someone, they just won’t listen. You know, whenever we go out, generally you’ve always got Tourette’s Action cards, so that if we need to, we can just hand it over because there is a misconception, especially with children, that they kind of think that you’ve learned it from your parents.
You know, this must be common language at home. Well, no, it’s not. It absolutely isn’t, but as you know, as a parent, you’ll do anything you can to protect your child. And, you know, you just want your child to just have a normal life and not to have people staring at them.
00:27:45:12 – 00:28:09:19
Liam
Ione, to kind of touch on that. Are there any particular suggestions or guidance when misunderstandings may arise? I mean, particularly when someone might have a an obscene vocal tic. What advice can you give to anyone when that situation arises, for the person with Tourette’s and also the person who is in the vicinity and hearing maybe an obscene tic?
00:28:09:21 – 0:32:31:18
Ione
This is such a tricky one. And Neve, I just want to say I’m so sorry that you had the experience. I’m sorry that you’re one of one of many people in the Tourette’s community who report similar experiences and I think that just indicates how far we’ve got to go in terms of educating people. I also understand that coprolalia tics, like Neve explained, coprolalia is the clinical term for kind of verbal utterances of insulting or offensive language, and they also includes copropraxia, which is kind of physical gestures that are insulting, so kind of giving the middle finger, etc. And these tics impact the minority of people with Tourette’s. Around 15 to 20% of people with Tourette’s. But it makes up for essentially everything that we see in the media and on our TV’s screens. And of course, it’s probably one of the trickiest types of tic to manage. It’s the tics that have the biggest social consequences, that get people in the most trouble, that stop people doing the things that they want and need to do.
When you kind of think of a sports arena and all of the different people there and the range of kind of cultural diversity and all of these different kind of potential triggers, then it can be quite an anxiety provoking space for people with tics and Tourette’s.
So, I mean, number one, initially having those visible markers of an invisible disability is really helpful and having to hand out cards that you can kind of give and then step away, because I think that often the difficulty is that you can start to become engaged in a bit of a back and forth.
You’re trying to justify and explain where these sounds, words or movements came from and if someone has been really personally upset, triggered or offended, we kind of as human beings, and this is completely natural, we stop listening and we shut down and we don’t really hear what the other person’s saying, because we feel really hurt. And sometimes coprolalia tics can be really hurtful and they can feel really targeted and personal. They’re not. They’re not what the person’s thinking or feeling – it’s probably the opposite of what they’re thinking or feeling.
But, so we know that when someone’s upset and offended, they can stop listening. And I think firstly, kind of what I’d say is if that’s really going on and you feel that you’re entering into a battle, step back, ask a staff member for support or help. Ask someone else for support and help. Kind of get out of that interaction. It’s only going to increase your tics and as a result, you’re going to probably increase some of the things that have upset or offended someone.
I think that having a person with you is so, so important. So having your kind of someone alongside you in all in any interactions can really help when you’re having lots of tics, especially tics that may be insulting or offensive to others, it can be really hard to step back and explain what’s going on. So having a safe person, whether that’s your mum, whether that’s your carer, whether that’s your best friend, can be really, really supportive. And, like theatre venues and music venues are getting great at these carers go free schemes and having someone alongside somebody, because it’s not always that actually my mum really wants to come and watch this sports game with me. It’s that my mum knows that I really need support at this sports game, okay, and she needs to access it with me so I can feel safe to do it. And the kind of what can be really helpful is having a carer goes free. So someone always has that human protection of someone else around them, who can help to explain where they can’t explain.
Again, making sure that you’ve informed the staff team or the stewards before you’ve gone. So if these kind of conflicts of eyes that you can kind of have that back up, you know, this is real and I’ve shared this information beforehand and this is kind of what happens. Some people almost have a catch phrase sentence that they’ll use, so it saves them having to think in action. Oh, my goodness, how do I manage this situation? It can be like ‘my name is John. I have Tourette’s. This means I sometimes say words and movements that I don’t mean. It’s not what I’m thinking or feeling. If you feel offended, I’m very sorry. I don’t mean to do it.’
And kind of what we’re saying here, is you don’t apologise for having Tourette’s in the same way that if you’re a wheelchair user and you hit someone with your leg plate, you know, your foot plate. You’d apologise for hitting them, but you wouldn’t apologise for being in the wheelchair. So if I really upset or offend someone, I might say I’m really sorry that that offended or upset you. It’s the nature of my condition. This is what this is what happens. I’m not apologising for being me. But I am sorry if it had a negative impact on on your day, essentially.
00:32:31:20 – 00:32:58:10
Liam
Education is obviously a massive part of of what we’re talking about and trying to make it a more inclusive environment. And I’m interested in know from from you, Ione. The number of people who have autism and people who have Tourette’s is very similar, particularly when we’re looking at children. However, when we’re talking about neurodiverse disabilities and attending live support, there is a lot of attention towards autism and not very much towards Tourette’s. Why do you think that is?
00:32:58:12 – 00:34:48:18
Ione
I think sadly, it’s not kind of only in live sports. It’s sort of across the board. So, in our health care systems, we know that most health care practitioners are pretty up-skilled and informed on autism in a way that they’re not on Tourette’s. In our schools, people are more up-skilled and informed about autism than tics and Tourette’s, and essentially kind of across the board Tourette’s has got a long way to go.
Research into autism outweighs research interests by about 50 to 1. So, simply the information, the data is out there, so kind of a more relevant and hot topic, and it’s really prevalent in our society. I think as we move forward, I hope that that bridge – kind of close the gap a little bit more, because like you said, the prevalence is is absolutely there.
And recently we’ve had some really big public figures kind of come out and share their experience of tics and Tourette’s. And I hope that often off the back of that, the positive consequence is that we increase this kind of – people start to talk about it. It’s been in the news more recently, which is wonderful. That’s how we can start to spot it.
The number of people that come into contact with – they start to learn about Tourette’s, and then they might say to us, actually, I’m pretty sure that I’ve got Tourette’s, but it’s just not the Tourette’s that I thought was Tourette’s. And so I didn’t even spot it. So I think that the lack of understanding and all the misunderstandings about Tourette’s has stopped us kind of talking about it and focusing on it as much.
I’m hoping it’s increasing in popularity and interest and that people will start to be more interested in this condition because it’s really, really complex and it’s really very common and it has such a big impact on kind of wellbeing and function that the only way we can make real, lasting change is by is by talking about these things at all levels.
00:34:48:24 – 00:35:00:05
Liam
I’m going to go around the board now with my last question, and I’ll start with you, Ed. What advice or strategies would you give to a person with Tourette’s who’s thinking about attending live support for the first time?
00:35:00:05 – 00:35:19:16
Ed – interpreted by Liz
I tell them to choose appropriate seats. Close to an aisle, so you can move if it’s necessary.
00:35:19:18 – 00:35:22:05
Speaker 1
Thank you, Ed. I’ll come to you next, Neve.
00:35:22:07 – 00:35:59:12
Neve
So I know everyone’s sort of trigger for their tics getting worse is different, but a big one for me is like if it’s really noisy or if I get overwhelmed and my tics are really likely to get worse. So if you have like earplugs, you know, whether it’s just the foam ones or like a branded one that like, actually dims sound out, or if you have like noise canceling headphones – whatever sort of works best for the person, but that can make things a lot less overwhelming. So then my might tics will be less likely to get worse.
00:35:59:14 – 00:36:02:12
Liam
Thank you, Neve. And finally, Ione.
00:36:02:14 – 00:37:18:12
Ione
Oh, absolutely. Well, I think Ed and Neve got the two top supports there. End of aisle seats are really important and those ear defenders. I know any kind of sensory adjustements can be really helpful. So some some kind of teams already do this really well, but offering kind of rentable or loanable sensory kits with ear defenders, fidgets and distractions.
A personal top tip, as a Tourette-fidget user, is sometimes you can get ones with tiny wrist straps on, which can be really helpful because I have used fidget items in sports matches before and got overexcited and thrown them at people and it’s counterproductive. So sometimes you literally need to strap it on with you before you can actually enjoy it, but they can be really helpful. Something to keep your brain and your body busy if you’re feeling anxious and overwhelmed and informing the team beforehand, sending that via an email, ideally there’s a bit of a record for it. So if anything does go really wrong and you kind of want to go back to them and say, I had this experience and how can we do it better next time, you’ve got a record of that.
And maybe arriving a little bit earlier or a little bit later than the main crowd and hustle bustle, because that getting in can be really intense. And by the time you’ve even found your seat, you might be so overwhelmed and ticcy that the game is secondary. You can’t even focus on that.
00:37:18:12 – 00:38:38:22
Liam
Perfect. Liz, Ed, Naimh, Vicky and Ione. Thank you so much for giving up your time. There will be links in the episode description on how you can find more information regarding Tourette Action. I think this has been a fascinating discussion and we’ll continue doing the work with Tourettes Action to try and educate and put it more in the spotlight regarding people attending live support.
Thank you to my guests for taking part in this episode. We’ll be back soon enough with another episode looking at disability and sport. If you’d like to know more about the work that we do at Level Playing Field, please head on over to a levelplayingfield.org.uk. Or if you just want to drop us an email, you can do that info@levelplayingfield.org.uk or you can follow us across social media. Just such a Level Playing Field. Don’t forget, please share this episode and past episodes with your friends and family and it really does help. Go and rate and review on whatever podcast platform you happen to use. If you’re going to a sporting event, please enjoy and don’t forget to leave your matchday feedback. All the best. Bye bye.
-Ends-
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