"It's happened again" - Frank Gardner left on a plane
Left on a plane waiting for assistance, we ask why it keeps happening to wheelchair-users.
After the BBC's Frank Gardner was left on a plane at Heathrow Airport waiting for his wheelchair to be returned to him upon landing - we ask, why does this keep happening to wheelchair-users?
Nikki and Emma explain the very complex and very Covid reasons behind it and reveal some possible solutions that might be coming your way soon. We also hear from wheelchair-users who join in with Frank's annoyance.
Aidy Smith was a successful child actor until he developed Tourette's Syndrome and the industry stopped booking him for jobs. With a bit of imagination and a knowledge of drinks he developed and produced the hit TV show, The Three Drinkers. He reveals the highs, lows and horrors of schooling at a time when little was known about Tourette's, and he talks about his brand new documentary which busts myths surrounding the condition
Presented by Nikki Fox and Emma Tracey.
Produced by Beth Rose and Keiligh Baker
With thanks to Mary Doyle and her wheelchair and airport knowledge.
The editors were Damon Rose and Jonathan Aspinwall.
Presented by Nikki Fox and Emma Tracey
NIKKI- Anything exciting to tell Foxy?
EMMA- I’m waiting on my subscription clothes box to come on Saturday. You get like ten options and you pick five. I’ve put some jumpsuits in there, Nikki. Let’s see how they go. And I live apart from my family that I grew up with, who are my sort of shopping gurus so I don’t see them often enough to go clothes shopping with them. My husband is really good at it, but it’s another thing to tick off his helping plate. Do you know what I mean?
NIKKI- Yeah. And do they describe the clothes for you, like what colour or style? I mean, have you got like a preferencing colour?
EMMA- I defer to other people in terms of the colour to be honest, because I’ve never seen colour. But style they do give you a little bit of a description. But it’s still a really big surprise when they arrive.
NIKKI- But they do the same with those subscription boxes for make-up and skincare and stuff as well, don’t they?
EMMA- They do.
NIKKI- It’s quite interesting.
EMMA- So, what’s your style then? What’s your style? What do you go for?
NIKKI- Pat Butcher.
EMMA- So, the only thing I know about Pat Butcher is earrings.
NIKKI- Okay. So, I’ve got bleached blond hair. I wear clothes that are about three sizes too tight for me. I am determined to at all times have my shoulders out. My inclination towards wearing a ginormous hoop earring is just so strong. And I generally don’t show my legs because for me to be able to walk I have to – most people don’t know this because I cover them – but I have to wear incredibly tight splints to hold my ankles in place. Because if I stood up my ankles would just collapse. And then I have to wear these very large boots, the sort of calf boots, very biker boot looking. And I have to have them incredibly tight like Liv says I’ve got guns of steel.
EMMA- Is it painful?
NIKKI- Yes, I get ulcers all the time on my ankles.
EMMA- Oh god, I really want to talk about this forever.
NIKKI- Honestly, you look really beautiful, Emma.
EMMA- Well, thank you.
NIKKI- So, you’re doing a cracking job.
EMMA- I have to always say when people say that I say, I’m sure you do as well.
Music- Theme music.
NIKKI- This is Access All. I’m Nikki Fox and I’m London.
EMMA- And I’m Emma Tracey and I’m in Edinburgh.
NIKKI- And this is our weekly podcast about disability and mental health from the BBC. We are reaching out to listeners in the UK and from around the world. Please subscribe, share and tell your friends and colleagues about us too. Now, Emma, let’s talk about wheelchair users and air travel. When Frank Gardner tweeted from an empty plane this week lots of us could relate. Other passengers might have been halfway home, but the BBC security correspondent couldn’t get off the plane because his wheelchair hadn’t been brought from the hold to the aircraft door. Now, I feel his pain.
EMMA- I don’t actually know a frequent flyer wheelchair user without a stressful aeroplane story, I really don’t. It’s like the trains last week; I think the whole section of the disabled population can identify with this story. Has it ever happened to you, Nikki?
NIKKI- It has, Em. Me and my sister were on a plane and we’d landed in the UK, and we were on the plane for about an hour, maybe it was slightly over an hour actually. To the point where obviously all the people that were coming on to turn over the plane to sort it out for the next flight were on, they were doing their thing, we were kind of in the way. And they wanted to board the next flight and we were still sat on the plane waiting for the assistance to come. And they were obviously waiting for our chairs and our scooters to be sent to the door. And that’s not the only time it’s happened.
EMMA- In this episode we’re going to focus very specifically on Frank’s issue, so your wheelchair or scooter getting back to you at the plane door when it lands. Repatriating the wheelchair is what they say in the industry.
EMMA- But I think to get some context and to think about where a disabled person’s head might be at by the time they land, can we just talk about the whole flight? Tell me a bit about the journey from the end bit of the airport to your seat on the plane.
NIKKI- So, you’ll either get on the plane via a jetty or you’ll use one of those, I think they call them an Ambulift, don’t they, one of those big lifts. I think you’ve been in one, haven’t you, Em?
EMMA- A weird big platform that sort of raises and folds.
EMMA- And all the PRMs go on it.
NIKKI- That’s it!
EMMA- The people of reduced mobility. I’m learning all of these acronyms now.
NIKKI- I quite like that. I’m a PRM, hey?
EMMA- I’m a, I can’t remember what I am. I’ve been called a blind a few times by special assistance.
NIKKI- Ooh charming.
NIKKI- So, you wait with all the other PRMs.
NIKKI- And then the goal is to get your scooter to the plane door. So, I will say to them that I need assistance to transfer from my scooter to the aisle seat, which is a very narrow chair, it’s a bit hairy to be honest with you, to get up the step. And then they take you to the seat and then they do the same kind of transfer onto your seat. When I used to walk a little bit I could use a bathroom on a plane, but now I can’t, they’re just too small. The way I work it it’s just not possible to use the bathroom.
EMMA- So, you don’t go to the toilet for the whole flight?
EMMA- So, your flight to Rio you won’t have been?
NIKKI- No. But what I tend to do, Em, is I’ve got this little technique of stuffing my face with food. So, I just eat everything before I board the plane and then I eat everything on the plane, and somehow I manage to dehydrate myself and it works and I don’t need to go. Now, this is ridiculous.
EMMA- Do not try that at home.
NIKKI- Do not try this at home. Do not. But for me it’s preferable to trying to work away.
EMMA- People have been getting in touch with us, Nikki. because it’s not just you and Frank.
NIKKI- No, it’s not just me and Frank. We’ve had people get in touch with a couple of horror stories and they’ve sent us voice notes. Starting with Ben Furner. Let’s have a listen to what Ben says:
BEN- I was left on a plane waiting for my mobility scooter to come out of the hold. They then sent a wheelchair to the plane to take me to the baggage claim, where they said that’s where they were going to send my scooter. And I said, absolutely not, it was agreed it would come to the plane entrance. And that is eventually what happened because of an intervention by the captain of the aircraft.
PAULA- I’ve had both: I’ve had the really bad, I’ve had the really good. I’ve had chairs trashed. I’ve had wheelchairs coming out looking like they belonged more in a circus, and it was literally taking your life in your hands or your chair’s life in your hands. I’ve experienced a lot of damage. But I’ve also experienced some really good flights as well.
ELLIS- As soon as the chair comes to the door of the plane I’m there kind of reconstructing it, putting the battery on, putting the remote on etc. because it’s an electric wheelchair, so I’m able to get around. And also that way if there’s anything missing or anything broken I can kind of report it to them there and then. Whereas if I go into the terminal and something’s broken it’s a lot more difficult to get them to fix it, a lot more difficult to get them to take responsibility for it.
EMMA- Thanks there to Ben, Paula and Ellis for your messages.
NIKKI- Well, listen, we’ve had some great WhatsApp messages this week. Thank you so much. Can you please keep them coming in?
NIKKI- Because we love to hear from you. I’m going to give you the number. It’s 0330 123 9480.
EMMA- And you can also use it for sending text messages.
NIKKI- Voice notes and text messages on the WhatsApp.
EMMA- Both are good.
NIKKI- Now, the BBC security correspondent Frank Gardner has used a manual wheelchair since 2004 when he and cameraman, Simon Cumbers, were ambushed by Al-Qaida in Saudi Arabia. Simon was sadly killed, and Frank was paralysed by gunshots to his back. So, he’s been a wheelchair user for quite some time now, so experiencing the many obstacles in life when you have to use a chair. And Frank made headlines actually at the weekend with what’s beginning to be a fairly regular story for him. It’s definitely not his first rodeo. He’s on the line now to chat about it. You’re on holiday. Thank you so much for speaking to us on your holiday, Frank.
FRANK- Anything for you Nikki.
NIKKI- Ah Frankie G. First off do you want to go back and tell us what happened to you recently at Heathrow?
FRANK- Yeah. Unfortunately this is a kind of boring repetitive occurrence. I was flying back from Estonia via Helsinki on Finnair. The airline was great, got to Heathrow, but after about 20 minutes of this I tweeted: it’s happened again, once again I’m stuck on a plane at Heathrow. And it does seem that disabled passengers are a lower or the lowest priority. I didn’t expect, I don’t know what categorises or classes this as going viral, but the tweet got 43,500 likes and has been retweeted thousands of times. So, it's clearly struck a chord with a lot of people who’ve had similar experiences. It wasn’t a huge amount of time, but by the time I got off the plane all the other passengers were gone, already off and out of the terminal. I got a huge extra bill from the taxi firm because I’d kept them waiting that much longer.
FRANK- The trouble is that this is now the fourth time that this has happened to me. I remember one time was extreme in 2018 when I was left stranded on a plane for an hour and 40 minutes.
FRANK- There was an earlier time on a flight back from Rome where there was nobody available, there was no high lift available. And the pilot and first officer broke all protocol and carried me down the steps.
FRANK- Well, they weren’t doing it for commercial reasons; they felt sorry for me. And that time I complained to Heathrow. I did get a reply. And in 2018 the chief executive of Heathrow airport, John Holland-Kaye gave me an hour of his time and said, ‘Look, what do we need to do to fix this?’ And he’s been really helpful and constructive. I’ve got them to stop this bonkers process they had of sending our wheelchairs off into the terminal. We don’t want our wheelchairs in the terminal; we want them at the floor of the plane. They’re our legs. You know about this. And certainly Heathrow the wheelchairs now come up to the door of the plane. So, take on that one.
NIKKI- Yes, well done with that because that was a policy change, wasn’t it?
FRANK- Yeah. Another thing is I’ve tried to explain to them, look, everybody’s different, please don’t have people come up to you and start man-handling you without even asking. I hate that, like you’re a lump of meat. I had made a suggestion to the chief exec of Heathrow, which he is quite interested in, which is that when a passenger gets on a plane with mobility needs at the departing airport they need to signal the receiving airport saying, passenger needs mobility support.
FRANK- And this I don’t think currently happens. It certainly didn’t happen in this case. But that would be a way of pre-empting this because Heathrow, unlike most modern airports, doesn’t have enough air corridors. Most times I land at Heathrow I’m having to wait for a high lift to get off the plane, rather than just rolling off into a corridor. But even if it’s a corridor I’ve still got to wait for the wheelchair to come up from the hold, and that needs baggage handlers to do it, and they’re frequently not available. They want to do the right thing.
FRANK- It’s not that they don’t care; I mean, that would be quite wrong to say that. It is a huge busy airport and they are frankly not at the moment up to the task of giving disabled passengers the service that they deserve. They need to invest more and get it right.
NIKKI- Oh Frankie, thank you so much for joining us today. I really appreciate you taking time out. And let’s hope that you don’t have to come on and talk about this again.
FRANK- Thank you, Nikki.
NIKKI- Well, we’ve got a statement here from Heathrow. So, a Heathrow spokesperson told us: they obviously want all passengers to have a seamless journey. They say: we were very disappointed to learn this was not the case for Mr Gardner. Unfortunately the delay was a result of the airport’s ground handling agents struggling with a colleague shortfall. It is clear that he did not receive the passenger service he deserved, and for this we apologise. It did go on to explain that post-pandemic all elements of the airport were scaling up resources, and that was causing a few teething problems too, which it also apologised for. Well, Em, I think we’ve established that disabled people like me sometimes…
EMMA- And me actually, but not wheelchair related.
NIKKI- No, but we sometimes get left on planes. It happens, for sometimes for quite a lot of time. And we’ve learnt why it happened to Frank, but there are other reasons why this happens, aren’t there?
EMMA- There are lots and lots of reasons. And a lot of it is about all the relationships that have to happen between all the different bits of the industry, like the ground crew who take the bags off, the airlines, the assistance staff and the airports. It’s about communication; it’s about training; it’s about there’s a big issue with lack of staff at the moment since the pandemic because the air industry has come back up more quickly than they’ve been able to get the staff in for all these roles, and that’s causing them a lot of problems as well.
NIKKI- But what is being done, Emma? Is anything being done at the moment?
EMMA- Well, the government’s big ambition for aviation, the Aviation 2050 report.
EMMA- There was a consultation done on that in 2018 and the results were due out in 2019, and it’s now 2022 and we haven’t seen the results of that yet. We’ve been told that the results will be out in due course, and the reason for the delay is the pandemic. When did the pandemic start, Nikki?
NIKKI- Was it 2020 March?
EMMA- Yeah. So, we have questioned the Department for Transport on those dates and when the report consultation results are going to be released. And they’re still sticking with the pandemic as their reason for the delay. They’ve proposed a passenger charter, which is like a public document which will set out the standards that are expected and the commitments that are going to be made. Within that it’s got sort of details around improved storage standards for wheelchairs in the hold. I think that people would…
NIKKI- Welcome that, yeah.
EMMA- …welcome that, right. So, that’s like tethers and things that are going to keep it really secure. This charter, we don’t know when that will happen or anything, we don’t know exactly what it will look like, but it’s supposed to be a one-stop shop for disabled people to get all the information they need about flying. And if things don’t go well they’re going to look at making it more in law the standards that you have to meet. The government wants to set up a working group to figure out how disabled people can stay in their chairs in the cabin. Because that is the Holy Grail, right?
NIKKI- That would just be like the bee’s knees, the dog’s danglies, that’s it: to be able to go in your chair, pull up at the front, lock yourself in, off you go. You don’t have to worry about your chair getting damaged; you don’t have to worry about being manhandled and walloped into another chair; you don’t have to worry about how you’re sitting.
EMMA- You know Mary Doyle from a couple of weeks ago?
NIKKI- I love Mary!
EMMA- Yeah, I know. She’s a massive aviation geek, she self-described. Her business is called Rocket Girl basically because she just loves flying and all that stuff. She’s a manual wheelchair user, and US law says that you can put one manual wheelchair in the closet in the aeroplane, so she does that. And her wheels are 24 inches, and I did a little research and it’s a very common size of wheel of her wheelchair. And she can put them in the overhead bins.
EMMA- Yeah. So, she now will go to non-US airlines and she’ll go to the door, if she gets to bring her chair to the door as you say, and she’ll say, ‘Have you got room in your cupboard for my chair?’ and sometimes they do and sometimes they’ll stick it in for her.
NIKKI- She’s amazing.
EMMA- Yeah. She’s got all the tips and tricks, hasn’t she?
NIKKI- I’ve tried that on my scooter but it didn’t work. They were like, no, no, no, no, no.
EMMA- Always worth a try I reckon.
NIKKI- Yeah. Now, if you’ve got any stories about air travel a good or bad we would love, love, love to hear from you. So, email us if you can at email@example.com, because this will not be the last time we talk about this issue.
EMMA- No, definitely not.
NIKKI- Frank’s probably going to tweet again in a couple of months. Please get in touch.
EMMA- Nikki, did you see Eurovision?
NIKKI- Did I see Eurovision? Oh Emma, I’m a Eurovision superfan anyway; I watch it year on year. I told you this before, didn’t I? And then in the halftime we always go on YouTube and we watch Riverdance. Oh my goodness. It was quite magical this year I thought because the combination of us having someone like Sam Ryder, who is just the most wonderful human by the looks of it and the sounds of it, I mean he’s just brilliant. He’s all peace and love and he speaks so beautifully, and everyone was saying how he represented the UK so well. And then obviously we had a vested interest, didn’t we, in Sheldon Riley?
EMMA- We did, lovely Sheldon.
NIKKI- Who we both kind of fell in love with.
NIKKI- Who was representing Australia.
EMMA- We don’t usually watch it and we watched every second this time because of Sheldon. I wanted Sheldon to soar, to thrive, to be amazing. And he was.
NIKKI- He was amazing. And he looked incredible. And he had his mask and he took it off, all the things he was telling us when he came on Access All a couple of weeks ago. I mean, it was so beautiful. I would like it to have been mentioned about his autism in a way. And I don’t know why I feel like that, because I don’t think you have to go round mentioned everyone’s by any stretch.
EMMA- I think it’s reasonable though, because the song really was about that.
EMMA- It really was about his story. So, to contextualise the song it might have been nice to say that Sheldon’s autistic.
NIKKI- And that that mask was significant when we took it off.
EMMA- Yes exactly.
NIKKI- We’ve got a little clip from a couple of weeks ago when we interviewed him and I fan girl’d all over him.
CLIP- It was very heavily drilled into me that I have Asperger’s. I was very quiet as a kid and I was unable to speak to a lot of people but I was told I wouldn’t be able to communicate or talk or find a partner or get a job or function as a normal human, whatever that means. Just being constantly told you’re not the same from the rest. But fast forward all these years, I’m very proud to be me. I think it’s the little bits of me that people wanted to fix for so long that make me super special. [Song: I’m Not the Same].
EMMA- Oh, it’s like a battle cry.
NIKKI- Ah, it gives me goose bumps, goose bumps.
NIKKI- Well, Katya on Twitter wrote, ‘So beautiful and powerful listening to Sheldon Riley. Australia is super proud, but more so the disability community and allies were cheering you on at Eurovision’.
NIKKI- It was definitely, definitely one of the best years.
EMMA- But he didn’t win. And the voting was quite complicated. It was split into an expert music jury vote and a public vote. And he got 123 votes from the juries and two from the public.
NIKKI- Which I did not understand that because that is a good song. I was surprised when they said two, and I was also thinking I hope Sheldon, like his heart…
EMMA- Hope he’s all right.
EMMA- I hope he’s all right. But he didn’t come last though, he came in the middle: he was 15th out of 25.
NIKKI- Yeah, you do worry, don’t you? I worry about all of them. I was worried about Germany because at one point Germany just had no points for ages. Well, separately we had a voice note – this is getting good, we’re starting to get them in, Emma, I’m really excited.
EMMA- I know. It’s so exciting.
NIKKI- Grrr. That’s my excited noise. This is a voice note from Lizzie in Nottingham. Here she is:
LIZZIE- Hi, I’m Lizzie Jones. I thought I’d give you a quick bell because I was listening to one of your podcasts from May 6th and it said to give you a voice message. I’m physically disabled with Ehlers-Danlos syndrome. I’m an ambulatory wheelchair user. I was diagnosed as autistic about two years ago. And I also have complex PTSD and complex grief. I have just three months ago had my first child and I’m currently on maternity leave from work. I’m actually an adult protection social worker and I do complex investigations into abuse cases. My main bugbear at the moment is the physical side of accessing things when you are disabled with a child. For example, I swim a lot and the disabled accessible changing rooms have a changing bed for adults in them, but they don’t actually have a baby change in them. And putting a three-month old on an adult changing bed and watching him very slowly slide towards the edge is quite scary. So, I’m ending up having to have a PA to do a lot of stuff with me simply because the world is not set up for being disabled with a child. It's like, yeah, I don’t know.
NIKKI- Oh Lizzie, thanks for getting in touch with all of that. I like how she started all of that with, I’m just getting in touch because you told us too.
EMMA- Yeah. Thank you for that. If more of you could do that that would be great. If everyone could just say, well they told you to get in touch. So, get the phones out and give us a shout.
NIKKI- Yeah. Because I think what’s interesting about Lizzie there there’s just not one size fits all when it comes to disability or mental health. Lizzie there is somebody who uses a wheelchair sometimes when she needs to. She has a child, she finds it difficult with the adult changing.
EMMA- You mean the changing table.
NIKKI- Table, that’s it. EMMA- So, table in the disabled toilets, accessible toilets, there’s a changing table but it’s not for a baby; it’s for an adult.
EMMA- Because it’s assumed that it’s an adult that will need to change in there, not a baby, because if you have a baby it’s assumed that you can go into the regular bathrooms.
NIKKI- That’s it. And it just shows, doesn’t it, because obviously the adult changing tables are essential for so many parents. And obviously there have been campaigns to have far more of them in public toilets around the country.
NIKKI- But for Lizzie they don’t work. So, it just shows you, doesn’t it?
EMMA- Yeah, I feel like there’s an invention coming on here that you should be able to just slip out a panel on it and pull it down.
NIKKI- Don’t say it on air, Emma; keep it in, love. I’ve got contacts on the Dragons’ Den.
EMMA- I’ll get on to Remap or whatever. They’re the ones who move stuff around and invent stuff and create amazing solutions for disabled people. Other inventors are available of course.
NIKKI- I love that. Thank you so much, Lizzie.
MUSIC- Theme music.
NIKKI- Now, I think me and my next guest are going t get on like a house on fire. I’m very excited about this. We Insta’d last night, didn’t we?
AIDY- We did.
NIKKI- Aidy Smith is a drinks writer and one third of The Three Drinkers. That’s the best gig I’ve ever heard. It’s a quirky wine enthusiasts programme and it’s on Amazon Prime. Now, Aidy also has Tourette’s Syndrome and has been on a journey of discovery for your new, it’s a Radio 4, isn’t it, doc that you’re going to be doing?
AIDY- Yeah, it is indeed.
NIKKI- Which sounds brilliant. And you’re going to be tackling public perceptions and all of that. But first hello.
NIKKI- It’s so nice to see you in person.
AIDY- It’s good to see you as well.
NIKKI- I’ve been watching you online and it’s been fabulous.
AIDY- Well, I’ve been watching you as well and I’m loving the sense of style. We both walked into the studio wearing this really irreverent jacket. You’ve got a gorgeous dress going on there.
NIKKI- Ah, thanks.
AIDY- It’s kicked off to a very good start.
NIKKI- It really has. We’ve got some printage going on here, haven’t we?
AIDY- We have.
NIKKI- Some zebra and some colour. I love it. But Aidy you are one of the few TV presenters round the world, well the only one I know, that’s got Tourette’s Syndrome. How did it manifest itself? Like when? Where? And what was the impact on you growing up?
AIDY- When I was a kid I actually was a child actor. So, at the age of about six and seven I had a show which was at the time on CITV and it was a kids show commissioned by Sesame Street. Life was amazing, everything was going perfectly, and then I started developing these random tics, so these twitches. And Tourette’s Syndrome is defined by tics that are either motor or vocal, and at the time I had both. So, I’d have this kind of whoop or screech, a bit of a scream, I would have this tic where I’d clap or I’d throw my head back. And this just kind of came out of nowhere and progressively got worse from the age of seven. But the problem was that in the medical world very few people knew what Tourette’s was, very few. The GP had absolutely zero idea.
AIDY- And so what ended up happening was it was all put down to bad behaviour and me just being mischievous in school so I’d get told off. I’d get sent out of the room, told to stand in the corner with my hands on my head. And I was basically punished for something that one, I had no idea what was going on, and two, I was petrified, and three, the one thing that I loved doing the most, my acting, I was completely ostracised and shunned from because they don’t want to put someone who twitches and tics in front of a screening because it will be an embarrassment to them and the acting school as far as they’re concerned.
NIKKI- I was reading about that. It must have been very sad at that age as well to take that disappointment really, and not being able to say, hang on a minute, this is why.
AIDY- And so it took several years of not knowing what was going on. And it was a teacher of mine at school who spoke to my mum on parents’ evening. She was called Mrs Morrison and she said, ‘I think that Aidy might have something called Tourette’s Syndrome’ to my mum. She went, ‘I watched a documentary on BBC not too long ago…’ Surprise, surprise.
AIDY- …‘and I think he might have this thing called Tourette’s’. And so my mum went off and kind of researched it and sure enough, that seemed to be what it was. So, three years later I ended up getting a diagnosis, but it took a long time to get it.
NIKKI- It took you guys having to diagnose yourself first before you got the diagnosis.
NIKKI- And did your life change when you had that diagnosis?
AIDY- I felt a sense of relief. When you actually know what’s going on inside your mind and your body you do get that sense of relief, like okay, that’s what it is. But yes, at the same time that’s when the bullying really starts to come out. And at the age of ten puberty and hormones are coming out there, and you’re aware of everything that’s going on around you so much more. The other thing was just all the meds that they just shove onto you. They’d be like, let’s just find a cure for it; not let’s help you lead an amazing life and what can we do for you in a social setting. It’s here, take these drugs. So, I ended up putting on loads of weight. And so I’d go from being this quite cool kid who has a TV show to being this overweight child who has these tics and noises that they make. So, the bullying was rife. From the age of seven to about 13 the bullying was really, really bad.
AIDY- But you know what, one thing I will say…
NIKKI- Go on.
AIDY- …is through every hardship we have in life we learn.
AIDY- And it’s the emotional intelligence and the cultural awareness that from being bullied and from going through all these things I can think in a third person perspective like very few can. And you’ll get this, you’ll both get this, when we have disabilities we learn so, so very much. That actually allows us to soar in life. We have this whole other way of thinking that is remarkable, and it’s quite beautiful.
EMMA- I’d prefer not to have the bullying though.
AIDY- Definitely prefer that.
EMMA- I’d prefer to learn it without that, do you know?
AIDY- It’s a difficult one, isn’t it, because you also think if we didn’t have that bullying would we have learnt as much as we did?
NIKKI- I think this Aidy, because I always think you know like when you’re very beautiful and you grow up beautiful and you’re a supermodel, you never really have to work that hard at your personality because it just kind of all comes. I’m generalising here. Whereas when you grow up as a disabled minger, which was me, you have to work so hard. I mean, you practically have to become a stand-up comedian.
EMMA- A minger! Did you just call yourself a minger?
AIDY- I assure you she’s not, at all.
NIKKI- A disabled minger. No.
EMMA- I can’t imagine you were ever a minger.
NIKKI- No, but I’ve blossomed.
EMMA- I wish you wouldn’t say that about yourself.
NIKKI- I’ve blossomed, I’ve done all right. I’ve worked on myself, it’s fine. But I’ll show you a few photos growing up. But you do, you have to work. But that’s made you. It’s why you’ve got The Three Drinkers on Amazon Prime and why you’re soaring in your career.
AIDY- I think that has a lot do with it. And when we are younger, I think you’re right, we look at ourselves when we’re younger, when we had these disabilities, and we look in the mirror and we hate ourselves. I mean, I certainly did. And I think a conversation that not enough people have is when people are going through so much torment self-harm and thinking about suicide becomes an actual thing. And this is a very taboo topic and subject that not a lot of people think about. But the only way we can get people not to feel that way is by building awareness.
AIDY- Which is exactly what you’re both doing here, so thank you ever so much for having so many people on to help these positive messages.
EMMA- How did you get past the suicide feelings and the self-harm? What brought you through that or how did you move forward from that?
AIDY- I discovered what I call my superpowers. So, essentially I found things that I truly love doing. I ended getting back into acting. I though, do you know what, no, you’re not going to stop me from doing this. And so when I was about 15, 16 I started getting back into acting at school. And my ability to perform outweighed the fear that I might ruin a production. So, I started getting good roles again at school. And it was my theatre studies group that really allowed me to kind of hone in on those skills. As an adult there are still loads of difficulties because commissioners now see the word Tourette’s and they think he’s going to swear. That’s the first thing they think.
NIKKI- Yeah. Is that the media that’s kind of, do you think that’s a media problem?
AIDY- I think so. It’s the documentaries that come out that focus on coprolalia, which 10% of people with Tourette’s Syndrome have coprolalia which is swearing and inappropriate gestures and whatnot. 90% of people do not have it. And don’t get me wrong, the people that do have coprolalia it’s blooming difficult. As a child I had coprolalia for a brief period of time and honestly it is very difficult. So, I take my hat off to people who are going through that and they have my utmost support whenever they need it.
AIDY- I think that it’s important that movies that are out there don’t just cast people for these one-off swear words out of nowhere, which have zero relevance to the plot of whatever the movie is at all. Or documentaries that solely focus on the people who have it hardest, because that’s then what everyone’s perception of Tourette’s is. So, I often get me when my publicist is talking to radio stations about being on, ‘Oh sorry, we can’t have people with Tourette’s on because they swear’. My publicist is like, ‘Well let me tell you something…’
NIKKI- Ha-ha, I love that. Aidy, we’re running out of time so I want to get to two things, very, very quickly. The Three Drinkers, can you make it the Five Drinkers by any chance and Em and I can get on board?
EMMA- Yes please, that would be good. It’s a quirky wine enthusiast programme. We’ve got a little clip; let’s hear it now:
CLIP- Raspberries, we’re going to model them. Lemon juice, adds a citrus. Vanilla syrup, adds a sweetness. And egg white, gives us texture, gives us a nice froth. The star of the show, Poitín.
NIKKI- Very quickly, how do you control the urge? Do you still have the urge to tic? From someone who’s a bit of a Tourette’s novice here.
AIDY- Yeah, we always have it. It’s there. And the best way for me to describe what does Tourette’s feel like: it’s like a mosquito bite. I want you to imagine that you’ve been bitten by a mosquito and you need to scratch something; and the longer you try and hold off scratching it the bigger the feeling becomes. And you eventually give in and scratch. But then the bite only itches more. The only way that we stop the Tourette’s or how it doesn’t affect us so much is to do what we do loving, which is what I keep going back to. Most of my tics are motor tics. But you’ll notice in the studio that they’re barely existent because I’m having so much fun and I’m focusing on what I enjoy doing.
NIKKI- Love that. And your Radio 4 doc, sum it up in a nutshell for us.
AIDY- The Truth About Tourette’s. So, for the first time on radio we look at the positives of this disability rather than it being a deficit.
NIKKI- I love that. When is it out?
AIDY- It’s going to come out on 31st May, and then it’s going to be repeated again on 5th June, and it will be available on BBC Sounds for 12 months.
NIKKI- I cannot wait to listen to that. You are a superstar.
AIDY- You are! And you are!
NIKKI- Can I see you again sometime?
AIDY- I would love to see you all again.
NIKKI- I’m not being inappropriately flirtatious. Aidy, it’s been a pleasure. [Music] Oh, thanks so much for listening. It’s been another great show. I’m loving doing these, Emma.
EMMA- I know. It feels like we might be slightly getting into our stride now. I shouldn’t have said that, should I?
NIKKI- Yeah, it’s all going to go downhill now, isn’t it?
NIKKI- Thank you all. Get in touch. We love hearing from you, and we will see you next week.
EMMA- Bye bye.