Living with Tourette syndrome

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1:32Hello, I'm James Reynolds. Welcome to the documentary from the BBC World Service. In BBC Conversations, we bring people together to share their experiences. And this time, we hear from people with Tourette's syndrome. Tourette's is an incurable condition causing people to make sudden repetitive movements or sounds known as ticks. In a minority of people, spoken takes can be offensive phrases or swear words. That's the case with John Davidson, whose life story and struggle with Tourette's inspired the film I Swear, which has just won three BAFTA awards. He was a guest at the ceremony in London.

2:12During the ceremony, he shouted different offensive words. But when Sinners stars Michael B. Jordan and Delroy Lindo were on stage, Davidson shouted a racial slur. This was then broadcast by the BBC. In a statement, Davidson said that he was deeply mortified and that the ticks were involuntary and didn't carry any meaning. The BBC has been widely criticised for not editing out the word. The BBC and BAFTA have both apologised. Each is now investigating. The events, meanwhile, have sparked a global debate. Our first conversation this week is with two black Americans with Tourette's syndrome. Jumaane D.

2:54Williams is a New York City public advocate believed to be the first U.S. elected official who has Tourette's. Jumaane sometimes takes the N-word himself, which, as you will hear, we have bleeped out. He's in conversation with Jamie Grace, a music producer in Atlanta. As a black woman, and specifically as a black woman in America, anytime the N-word is heard, specifically in the context of a white person to a black person, it's horrible. Unfortunately, I have personal experience with that. I grew up in the South. And so that personal experience is just something that's incredibly frustrating. When I first saw the clip, that's actually the perspective that I was watching it from.

3:34And I was devastated and could not believe what was going on. But then as a person with Tourette syndrome, when I saw that the person that said it had Tourette syndrome, I went, oh, my gosh, because I was just already pre-devastated for the way that I felt that these conversations would go over the next time. few days. I know for a fact that there are tics that I have and that my friends have and that my peers have that we don't want at all and that don't represent who we are. It also simultaneously does not mean that it was not absolutely devastating and offensive that it actually happened. Similarly, I've been Black for a pretty long time and I had Tourette's syndrome for a a long time.

4:16I also have corporella, which is shouting of socially unacceptable words. I also actually tick the N-word. So like all of those things intersect for me. And for me, it's just trying to figure out having folks do something which is difficult, which is holding two things at the same time, both equally, and making sure that empathy goes both ways, and that the anger is placed in the right spaces. And so trying to have folks, let them understand that the tick in and of itself doesn't describe intent and that arrest syndrome is intrusive thoughts uh with vocal sounds with body movements that can cause pain to you but you still have to do it and so getting folks to understand that that doesn't change the harm that was done by the n-word being shouted out and so for me the question is whose job was it to try to manage and reduce the harm to people like Michael B.

5:13Jordan and Daryl Lindo. That's where I think the conversation should be, because they had to do what Black folks, unfortunately, had to do, which is show poison grace while harm is happening to them. And I don't think enough people took the time to reduce that harm, knowing what could occur in a situation like this. You know, growing up, I've learned to try to augment some of my tics so that they don't cause as much harm. I always want to be careful because not everybody can do that. And there is harm to yourself when you're holding ticks too long. So that's a real thing. And also, there are people who created the show, who aired the show that could have and should have done so much more to help everyone involved.

5:57I personally have been on both ends of scenarios like this where I have ticked and it was not great for me. And I, you know, owed apologies and things like that. And I've also been on the end of being called the N-word multiple times at a teenager event for kids with Tourette's when I was a kid. And so if I were to just kind of put the comparison to that, I wish that there had been more of an intake form at bare minimum with the other teenagers, with the leaders of the event that I attended to say, hey, do any of your tics cause physical harm? Is there a risk that you could say a racial slur? I wish that that had been a part of the process so that I, as a teenager, could have at least been informed like, hey, this is an event with teenagers with Tourette's syndrome.

6:47But just so you know, about 15 % of these teenagers might say X, Y, Z. Jamie, do tell us a bit about your own life with Tourette's. I don't have any tics that physically harm myself or anything like that right now. It's been years since that. but it is a significant irritant. It's hard to necessarily explain, but my tics are just a constant irritant. I live a quite typical life, if you will, spouse, child, house, job, all the things. But having Tourette's syndrome be manageable for me, it just feels like a constant, like almost like a nap in your ear that you just can't get rid of. And it's just this daily choice to find peace and rest and to find a will to continue to go on because it's it's not easy it's not fun but it's you know likely here um for for the for the long haul and so i just try to find find the positives where i can and um and manage the ticks as best i can you know just first interesting is listening to jamie i am and i'm gonna walk away with something i have never really thought about the toll it takes to manage my tics, I kind of just do it.

8:01And so I just want to thank Jamie because I am actually going to take a moment with myself to just process what that has meant. I got diagnosed in ninth grade and I really haven't stopped to process that. It's just more about adapting and trying to get through life. So I just want to personally say thank you, Jamie, for that because I need to do that myself as a spouse and a father who's just navigating that was very impactful to me i did almost get kicked off with amtrak train once uh and i jokingly say i wish it had happened because i might be wealthy but it didn't i was able to explain what was going on there was an episode in school where a teacher had to intervene to explain uh what was going on so you do have a few of those things and i've never really unpacked those either which is its own thing but it's really just trying to figure out how to just get through life with this and how to just manage it.

8:54I wonder, does knowing what it's like to be abused racially, and you've both had experience of that, inform the way you act in day-to-day life with your own Tourette's? Yeah, most definitely. I think a lot of kids in America are taught what to do if you're ever pulled over by a police officer, you know, when you start driving. and I think that conversation is different for families of color and I think it's especially different for families of color with disabilities and yeah I mean that that's one of the first conversations that I remember my parents had me sit there and recite and practice you know if I were to get pulled over hi I have Tourette syndrome it is a tic disorder do you mind if I explain or do you know what it is and the first time I got pulled over it was it was it was really difficult The responding officer accused me of being intoxicated and it became a difficult conversation.

9:53And thankfully I made it home. But yeah, it influences every day. And it's exhausting how much it influences every day. But yeah, just, you know, short answer. Yes, I guess. It's interesting just listening to Jamie speak. You know, both being Black in America and having Tourette's syndrome has definitely informed me. You're right. I had the conversation with my mother about what to do if stopped by the police. And, you know, having been a part of the Tourette's Association, I remember I got diagnosed in ninth grade, which is around 14 years old, having pamphlets that I can bring to teachers, that I can bring to students, explaining what it is.

10:35And I don't do it as much now, but the ease of which I'm able to talk about Tourette's came, I think, from that. And if I'm just telling folks, hey, I have Tourette's, do you know what it is? more people do now than they did 36 years ago. But at the intersection of that, you know, as an elected official, I was fighting against something called the stop, question, and frisk. People have heard of a stop and frisk. It was a police tool that was being abused. And they were just, you know, in New York City, they stopped more young black men than lived in the city of New York. This was about 10, 15 years ago.

11:07And one of the things that they used for a stop was, quote, unquote, furtive movement. and I'm like well dang all I do is make further movements so what do I do with that so the intersection of that has been always interesting I do think one of the pluses is I am I think I'm an empath by by nature but it definitely has made me more empathetic to what people are going through and understanding I don't know anyone's particular journey that's gotten them to this point in time that I'm meeting them. And I think that helps me navigate some tough conversations and tough discussions with people that have different points of view, because I just don't know your journey.

11:50And I think part of that might be the intersection of who I am. I have a lot of, um, a lot, a lot of privilege in that, um, I have a really strong family unit and they've just always been a really, really strong anchor for me tick wise, or just generally, but I had a physical tick where my, my feet would kick backwards. It was really severe until I still do that tick now, but I just do a lot. I've trained myself to move a lot slower so that, you know, it took about 10 years, but I'm okay now. But for ages maybe nine to 17, it was so severe that I couldn't walk around a store without injuring myself because I would kick all the shelves.

12:30I would kick whatever in the back of, from my calves to the back of my ankles were just sore or swollen. My mom would walk behind me in the store so that I would kick her instead. She did that for years. My dad would physically hold me, my husband as well, if my tics were just so out of control and I couldn't sleep. Music brings a lot of peace for me, which is one of the main reasons why I play. I started off playing drums. And my word, if there's any kid listening that has a tick disorder, please start playing drums. It'll change everything. And then my Christian faith as well. That has been just a huge part of how I kind of turned out, if you will.

13:16Jamie and Jomani sharing their experiences of living with Tourette's. I'm James Reynolds. You're listening to The Documentary from the BBC World Service.

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15:23Coco, guess what time it is? Time for season six. Time for season six. I'm Damilanta Kombo and that's my daughter Coco, the inspiration for my award-winning podcast, Dear Daughter, from the BBC World Service. And we're back. I'll be speaking to some amazing people as I collect your letters telling your stories. Dear daughter, being your mum has taught me so much about myself. And giving advice to people everywhere. I want them to be able to take the space that I know that they should have. And I would love to give them the complete agency to do that. Search for Dear Daughter wherever you get your BBC podcasts.

16:07Dear Daughter.

16:14Tourette's is a genetic condition that affects the nervous system. It's estimated that one in every hundred children, many millions around the world then, have it. We've talked already about some of the symptoms, and as we'll hear in a moment, the involuntary sounds we've discussed aren't always offensive words. For our next conversation, my colleague Priya Rai brought together three people here in the UK with the condition. Mother, Becky, Ed, a medical doctor, and Wilhelmina, a 19-year-old music student. And during the conversation, you'll hear some of Wilhelmina's vocal tics, which she is happy for us to include.

16:49It's sort of affected me pretty much the majority of my life. I have no memory of sort of not ticking because my tics started at around the age of five and since then have sort of progressed from small little facial tics to more complex tics and now are very much part of my sort of daily life, let's say, with a mixture of like vocal tics and physical tics. I've had tics all my life that I didn't know. what I've realized now is my full family have got Tourette's and we were all ticking around each other and we just thought we were normal people so you know we didn't realize anything was different for the last 10 years I've been in a lot of pain with my neck because of my neckticks and it's just in recent years that I was lucky enough to go to a local charity called Tick Yorkshire to help with my daughter and ADHD and I walked into a room full of people that were doing the same things as me and I was like oh so now I know why I'm in pain and I've been officially diagnosed.

17:44Lots of what Eka and Wilhelmina have said have related to me. My tics also started when I was little about three or four years old. Most of my tics are movement tics and motor tics and so I also have a net tic so I probably move my tic a hundred plus times a day and and that causes or can cause me a lot of pain and discomfort as well. Sometimes it can happen kind of waxing and waning So there are just times where people's tics seem to be a bit better or a bit worse, but also certain triggers. So for me being kind of stressed or anxious, for example, around exam times can often make my tics worse as well.

18:20Can you three give us a sense of how your Tourette's has impacted your lives? Because it's such a like constantly changing condition for me personally anyway. I think that the ways in which it affects my life have varied so vastly. As a kid, maybe it didn't affect me massively. And then as I started to progress through school, you know, that suddenly became very challenging because the classic classroom situation is sort of not really designed very well for a child with Tourette. So then you start coming across more sort of barriers within life. I discovered music at a very young age. And I discovered that when I played an instrument, my tics almost completely vanished.

18:59And that was something throughout my whole sort of schooling experience, which I really held on to and a sort of passion that drove me forward and sort of opened up opportunities that I perhaps might not have had otherwise. Ticks are a funny thing because you can get to grips with the ticks that you've got and think you're really on top of everything and you know just how to cope. And then you wake up the next day and you've got five new ticks that you've never had before. And that might mean that suddenly cooking a meal is difficult or getting on the bus can suddenly become uncomfortable or, you know, it can really affect your life in so many different ways.

19:31You mentioned music there as well, which is really interesting. Of course, people might know that there's Lewis Capaldi, there's Billie Eilish as well, people who have spoken about their own tics and how Tourette's affects them as well. I wonder at all what that means to you, seeing musicians or even just well-known people talking about it? Yeah, I think that it's quite a powerful thing, especially maybe when I was a bit younger, being able to look up to, as any child does, you know, look up to famous people or celebrities or famous musicians. And for a child with Tourette's, lots of the time, you can't fully relate to someone else because your world and your life is different from other people's.

20:13and so being able to acknowledge the fact that actually there are successful people in this world that do have Tourette's because sadly you know I've actually been told multiple times by professionals that I've got Tourette's so I need to lower my expectations and I won't necessarily finish uni and I won't get a job and there's sort of very much this negative spiral that can sometimes be put on a child when they're diagnosed so be able to look up to some amazing successful people especially you know for me in the creative industry was something that was it's quite important i was just thinking along what williamina was saying there i've got a lot of similarities in a way i've always been very artistic i've always very much liked my music liked my music very loud because it blocks a lot of things out and when i'm in that music it does it disappears for my daughter at the moment her tics are coming out in a very different way to mine so she's got more vocal tics and some more very complex tics and she's starting to get a few occasions where she's got into trouble at school so it's important to me that she's got that diagnosis because now we can work with it rather than her going down the wrong path in school they know there's an issue and they can help her with it but obviously a lot of us haven't had that support or people who have been diagnosed at my age had very different support when we were in school similar for me as well I think the way that I always think about it is often what people see when they meet someone with ticks and Tourette's is maybe just the tip of the iceberg.

21:39They might see one twitching their face or jerking their arm or saying a word. But often that's just the very tip of the iceberg. There's often a lot of pain that goes with that. There's often a lot of stress and anxiety that's attached to doing it in public. It can cause stigmatization, some embarrassment. And also that we know that Tourette's often co-occurs with other conditions as well. So someone might, you might see their Tourette's, but you don't necessarily see their anxiety or their ADHD or their autism that co-presents with it as well. And I think that's why it's really powerful hearing these kind of success stories that you mentioned about, you know, representation is key.

22:15It's really powerful. And I think it's wonderful now that young people growing up have kind of inspirational role models like that. What kind of conversation do you have with yourselves if you know you're going into some kind of situation that might be tricky or might pose a particular challenge? Do you find yourself, you know, sometimes withdrawing and not putting yourself into that situation? Or how do you deal with it at those moments? It is quite difficult at times. And obviously having my daughter in the same situation, quite often I have to put my own self aside and so I can deal with her issues.

22:50So it's like I'm getting a double whammy really. I'm trying to deal with my own thoughts and her own thoughts. It does make it really hard. It makes it hard for her to go to school. It makes it hard for her to go into various situations that aren't the norm. The one and only time that she's fully relaxed is when we go to a support group for people with ADHD and Tourette's. That's one place where the kids are just completely themselves because they're allowed to be. I think that, just adding on to that, that bubbles, bubbles, sorry, bubbles. Oh, I've just lost my train of thought. What was the question?

23:26It's how you deal with certain situations. yeah yeah I think that for me personally on my sort of Tourette's journey as a kid I spent a lot of time actively trying to hold in my tics and sort of hide it from the world even from myself to be honest I think I just spent so much time trying to hold it all in so that I didn't have to you know explain to people or I was scared of the judgment and so on and so forth and as I got older and the tics became more and more impossible to hide and it was becoming detrimental you know I started ticking more openly and talking about it with people and not that that was easy that was quite difficult over time I became a lot more comfortable with that and freely ticking in front of people and personally I always find that for me if I go into a situation being able to advocate for myself and just educate someone else or just even just be like hey I've got Tourette's you know and move on sometimes that's all it takes to sort of make a situation more comfortable because once people have that sort of full understanding no one ever has a problem with it it's when people haven't had the opportunity to learn or are ignorant about what the disability actually means is when sort of these barriers become more obvious.

24:38Yeah I mean it can be really upsetting and distressing for people there are lots of examples where people may do tics that are distracting in some way so we've talked a little bit about classroom for example an environment where you're aware that lots of other children are trying to kind of concentrate or work or an exam environment and your tics may be distracting and there might be some examples where tics might cause injury to someone else or offence to someone else and that can be really really difficult to deal with and I think we have to hold space for for those that have been offended by what happens it doesn't negate that but but also having kind of compassion and understanding for the person with the condition because we do know that these ticks are involuntary.

25:20People have almost no control over them and certainly no kind of control or determination over what the tick is or what word is said. Unfortunately, for fear of offending or upsetting or feeling embarrassed, it does cause people to become very isolated and that can be a real issue for people in the community. One of the hardest parts about it is that you can go into a situation feeling confident that you're going to go into the situation, you're going to tick, everything's going to be fine, you're going to explain, you know, and the world's not going to end. But, you know, sadly, lots of people, including myself, do face regular issues with maybe members of the public that just don't really understand what Tourette's means.

26:02And you end up in situations that aren't very nice. And I think that that really can reinforce the idea that someone with Tourette's maybe shouldn't be on the bus, or they shouldn't go to the cinema, or whatever it is that's bringing the personal anxiety that is quite challenging and the fact that you know it doesn't just disappear so it doesn't matter how comfortable I am within my own sort of bubble situations like I'm a university student I'm at the Royal College of Music and within my music department I get on with them all really well we're all really close they understand Tourette's and we can talk about it we can laugh about it but at the end of the day I've still got to get on the bus home or I've still got to go do my shopping where you start to remember that you can never quite get away from that sort of anxiety around it.

26:46Wilhelmina, Becky and Ed. And by the way, you might want to check out Wilhelmina's blog, Tictastic.com, where she shares some more of her own experiences. Our thanks to all of our guests for sharing their stories of living with Tourette's. So interesting to hear in both conversations that music is such a help. I'm James Reynolds. You've been listening to The Documentary from the BBC World Service.

27:20Coco, guess what time it is? Time for season six. Time for season six. Time for season six. I'm Damilanta Combo and that's my daughter Coco, the inspiration for my award-winning podcast, Dear Daughter, from the BBC World Service. And we're back. I'll be speaking to some amazing people as I collect your letters telling your stories. Dear daughter, being your mum has taught me so much about myself. And giving advice to people everywhere. I want them to be able to take the space that I know that they should have. And I would love to give them the complete agency to do that. Search for Dear Daughter wherever you get your BBC podcasts.