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"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 91福利社'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.

Release date:

Available now

34 minutes

Transcription

20th May 2022bbc.co.uk/accessallAccess All 鈥� episode 4
Presented by Nikki Fox and Emma Tracey
NIKKI- Anything exciting to tell Foxy?
EMMA- I鈥檓 waiting on my subscription clothes box to come on Saturday. You get like ten options and you pick five. I鈥檝e put some jumpsuits in there, Nikki. Let鈥檚 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鈥檛 see them often enough to go clothes shopping with them. My husband is really good at it, but it鈥檚 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鈥檝e never seen colour. But style they do give you a little bit of a description. But it鈥檚 still a really big surprise when they arrive.聽
NIKKI- But they do the same with those subscription boxes for make-up and skincare and stuff as well, don鈥檛 they?
EMMA- They do.
NIKKI- It鈥檚 quite interesting.聽
EMMA- So, what鈥檚 your style then? What鈥檚 your style? What do you go for?
NIKKI- Pat Butcher.
EMMA- So, the only thing I know about Pat Butcher is earrings.聽
NIKKI- Okay. So, I鈥檝e 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鈥檛 show my legs because for me to be able to walk I have to 鈥� most people don鈥檛 know this because I cover them 鈥� 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鈥檝e 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鈥檙e doing a cracking job.聽
EMMA- I have to always say when people say that I say, I鈥檓 sure you do as well.聽
Music- Theme music.聽
NIKKI- This is Access All. I鈥檓 Nikki Fox and I鈥檓 London.
EMMA- And I鈥檓 Emma Tracey and I鈥檓 in Edinburgh.
NIKKI- And this is our weekly podcast about disability and mental health from the 91福利社. 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.聽 Now, Emma, let鈥檚 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 91福利社 security correspondent couldn鈥檛 get off the plane because his wheelchair hadn鈥檛 been brought from the hold to the aircraft door. Now, I feel his pain.聽
EMMA- I don鈥檛 actually know a frequent flyer wheelchair user without a stressful aeroplane story, I really don鈥檛. It鈥檚 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鈥檇 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鈥檚 not the only time it鈥檚 happened.聽
EMMA- In this episode we鈥檙e going to focus very specifically on Frank鈥檚 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.
NIKKI- Repatriating.聽
EMMA- But I think to get some context and to think about where a disabled person鈥檚 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.聽
NIKKI- So, you鈥檒l either get on the plane via a jetty or you鈥檒l use one of those, I think they call them an Ambulift, don鈥檛 they, one of those big lifts. I think you鈥檝e been in one, haven鈥檛 you, Em?
EMMA- A weird big platform that sort of raises and folds.聽
NIKKI- Yeah.
EMMA- And all the PRMs go on it.
NIKKI- That鈥檚 it!
EMMA- The people of reduced mobility. I鈥檓 learning all of these acronyms now.聽
NIKKI- I quite like that. I鈥檓 a PRM, hey?
EMMA- I鈥檓 a, I can鈥檛 remember what I am. I鈥檝e been called a blind a few times by special assistance.聽
NIKKI- Ooh charming.
EMMA- Yeah.
NIKKI- So, you wait with all the other PRMs.
EMMA- Yeah.
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鈥檚 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鈥檛, they鈥檙e just too small. The way I work it it鈥檚 just not possible to use the bathroom.聽
EMMA- So, you don鈥檛 go to the toilet for the whole flight?
NIKKI- No.
EMMA- So, your flight to Rio you won鈥檛 have been?
NIKKI- No. But what I tend to do, Em, is I鈥檝e 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鈥檛 need to go. Now, this is ridiculous.聽
EMMA- Do not try that at home.聽
NIKKI- Do not try this at home. Do not. But for me it鈥檚 preferable to trying to work away.
EMMA- People have been getting in touch with us, Nikki. because it鈥檚 not just you and Frank.聽
NIKKI- No, it鈥檚 not just me and Frank. We鈥檝e had people get in touch with a couple of horror stories and they鈥檝e sent us voice notes. Starting with Ben Furner. Let鈥檚 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鈥檚 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.聽
PAULA- I鈥檝e had both: I鈥檝e had the really bad, I鈥檝e had the really good. I鈥檝e had chairs trashed. I鈥檝e 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鈥檚 life in your hands. I鈥檝e experienced a lot of damage. But I鈥檝e also experienced some really good flights as well.
ELLIS- As soon as the chair comes to the door of the plane I鈥檓 there kind of reconstructing it, putting the battery on, putting the remote on etc. because it鈥檚 an electric wheelchair, so I鈥檓 able to get around. And also that way if there鈥檚 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鈥檚 broken it鈥檚 a lot more difficult to get them to fix it, a lot more difficult to get them to take responsibility for it.聽
EMMA- Thanks there to Ben, Paula and Ellis for your messages.聽
NIKKI- Well, listen, we鈥檝e had some great WhatsApp messages this week. Thank you so much. Can you please keep them coming in?
EMMA- Please.
NIKKI- Because we love to hear from you. I鈥檓 going to give you the number. It鈥檚 0330 123 9480.
EMMA- And you can also use it for sending text messages.聽
NIKKI- Voice notes and text messages on the WhatsApp.
EMMA- Both are good.
NIKKI- Now, the 91福利社 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鈥檚 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鈥檚 beginning to be a fairly regular story for him. It鈥檚 definitely not his first rodeo. He鈥檚 on the line now to chat about it. You鈥檙e on holiday. Thank you so much for speaking to us on your holiday, Frank.聽
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鈥檚 happened again, once again I鈥檓 stuck on a plane at Heathrow. And it does seem that disabled passengers are a lower or the lowest priority. I didn鈥檛 expect, I don鈥檛 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鈥檝e had similar experiences. It wasn鈥檛 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鈥檇 kept them waiting that much longer.聽
NIKKI- Yeah.
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.聽
NIKKI- Wow.
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.聽
NIKKI- Wow.
FRANK- Well, they weren鈥檛 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, 鈥楲ook, what do we need to do to fix this?鈥� And he鈥檚 been really helpful and constructive. I鈥檝e got them to stop this bonkers process they had of sending our wheelchairs off into the terminal. We don鈥檛 want our wheelchairs in the terminal; we want them at the floor of the plane. They鈥檙e 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.聽
NIKKI- Yes, well done with that because that was a policy change, wasn鈥檛 it?
FRANK- Yeah. Another thing is I鈥檝e tried to explain to them, look, everybody鈥檚 different, please don鈥檛 have people come up to you and start man-handling you without even asking. I hate that, like you鈥檙e 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.聽
NIKKI- Yes.
FRANK- And this I don鈥檛 think currently happens. It certainly didn鈥檛 happen in this case. But that would be a way of pre-empting this because Heathrow, unlike most modern airports, doesn鈥檛 have enough air corridors. Most times I land at Heathrow I鈥檓 having to wait for a high lift to get off the plane, rather than just rolling off into a corridor. But even if it鈥檚 a corridor I鈥檝e still got to wait for the wheelchair to come up from the hold, and that needs baggage handlers to do it, and they鈥檙e frequently not available. They want to do the right thing.聽
NIKKI- Yeah.
FRANK- It鈥檚 not that they don鈥檛 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.聽
NIKKI- Oh Frankie, thank you so much for joining us today. I really appreciate you taking time out. And let鈥檚 hope that you don鈥檛 have to come on and talk about this again.聽
FRANK- Thank you, Nikki.
NIKKI- Well, we鈥檝e 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鈥檚 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.聽 Well, Em, I think we鈥檝e established that disabled people like me sometimes鈥�
EMMA- And me actually, but not wheelchair related.聽
NIKKI- No, but we sometimes get left on planes. It happens, for sometimes for quite a lot of time. And we鈥檝e learnt why it happened to Frank, but there are other reasons why this happens, aren鈥檛 there?聽
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鈥檚 about communication; it鈥檚 about training; it鈥檚 about there鈥檚 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鈥檝e been able to get the staff in for all these roles, and that鈥檚 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鈥檚 big ambition for aviation, the Aviation 2050 report.聽
NIKKI- Wow.
EMMA- There was a consultation done on that in 2018 and the results were due out in 2019, and it鈥檚 now 2022 and we haven鈥檛 seen the results of that yet. We鈥檝e 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鈥檙e still sticking with the pandemic as their reason for the delay. They鈥檝e 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鈥檚 got sort of details around improved storage standards for wheelchairs in the hold. I think that people would鈥�
NIKKI- Welcome that, yeah.聽
EMMA- 鈥elcome that, right. So, that鈥檚 like tethers and things that are going to keep it really secure. This charter, we don鈥檛 know when that will happen or anything, we don鈥檛 know exactly what it will look like, but it鈥檚 supposed to be a one-stop shop for disabled people to get all the information they need about flying. And if things don鈥檛 go well they鈥檙e 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鈥檚 knees, the dog鈥檚 danglies, that鈥檚 it: to be able to go in your chair, pull up at the front, lock yourself in, off you go. You don鈥檛 have to worry about your chair getting damaged; you don鈥檛 have to worry about being manhandled and walloped into another chair; you don鈥檛 have to worry about how you鈥檙e sitting.聽
EMMA- You know Mary Doyle from a couple of weeks ago?
NIKKI- I love Mary!
EMMA- Yeah, I know. She鈥檚 a massive aviation geek, she self-described. Her business is called Rocket Girl basically because she just loves flying and all that stuff. She鈥檚 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鈥檚 a very common size of wheel of her wheelchair. And she can put them in the overhead bins.聽
NIKKI- No?
EMMA- Yeah. So, she now will go to non-US airlines and she鈥檒l go to the door, if she gets to bring her chair to the door as you say, and she鈥檒l say, 鈥楬ave you got room in your cupboard for my chair?鈥� and sometimes they do and sometimes they鈥檒l stick it in for her.聽
NIKKI- She鈥檚 amazing.聽
EMMA- Yeah. She鈥檚 got all the tips and tricks, hasn鈥檛 she?
NIKKI- I鈥檝e tried that on my scooter but it didn鈥檛 work. They were like, no, no, no, no, no.聽
EMMA- Always worth a try I reckon.聽
NIKKI- Yeah. Now, if you鈥檝e 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 accessall@bbc.co.uk, because this will not be the last time we talk about this issue.
EMMA- No, definitely not.聽
NIKKI- Frank鈥檚 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鈥檓 a Eurovision superfan anyway; I watch it year on year. I told you this before, didn鈥檛 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鈥檚 just brilliant. He鈥檚 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鈥檛 we, in Sheldon Riley?
EMMA- We did, lovely Sheldon.聽
NIKKI- Who we both kind of fell in love with.
EMMA- Yeah.
NIKKI- Who was representing Australia.聽
EMMA- We don鈥檛 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鈥檛 know why I feel like that, because I don鈥檛 think you have to go round mentioned everyone鈥檚 by any stretch.聽
EMMA- I think it鈥檚 reasonable though, because the song really was about that.聽
NIKKI- Exactly.
EMMA- It really was about his story. So, to contextualise the song it might have been nice to say that Sheldon鈥檚 autistic.聽
NIKKI- And that that mask was significant when we took it off.聽
EMMA- Yes exactly.聽
NIKKI- We鈥檝e got a little clip from a couple of weeks ago when we interviewed him and I fan girl鈥檇 all over him.聽
CLIP- It was very heavily drilled into me that I have Asperger鈥檚. I was very quiet as a kid and I was unable to speak to a lot of people but I was told I wouldn鈥檛 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鈥檙e not the same from the rest. But fast forward all these years, I鈥檓 very proud to be me. I think it鈥檚 the little bits of me that people wanted to fix for so long that make me super special. [Song: I鈥檓 Not the Same].
EMMA- Oh, it鈥檚 like a battle cry.
NIKKI- Ah, it gives me goose bumps, goose bumps.聽
EMMA- Yeah.
NIKKI- Well, Katya on Twitter wrote, 鈥楽o 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鈥�.聽
EMMA- Oh.
NIKKI- It was definitely, definitely one of the best years.聽
EMMA- But he didn鈥檛 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.聽
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鈥�
EMMA- Hope he鈥檚 all right.聽
NIKKI- Yeah.
EMMA- I hope he鈥檚 all right. But he didn鈥檛 come last though, he came in the middle: he was 15th out of 25.
NIKKI- Yeah, you do worry, don鈥檛 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 鈥� this is getting good, we鈥檙e starting to get them in, Emma, I鈥檓 really excited.聽
EMMA- I know. It鈥檚 so exciting.聽
NIKKI- Grrr. That鈥檚 my excited noise. This is a voice note from Lizzie in Nottingham. Here she is:
LIZZIE- Hi, I鈥檓 Lizzie Jones. I thought I鈥檇 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鈥檓 physically disabled with Ehlers-Danlos syndrome. I鈥檓 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鈥檓 currently on maternity leave from work. I鈥檓 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鈥檛 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鈥檓 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鈥檛 know.聽
NIKKI- Oh Lizzie, thanks for getting in touch with all of that. I like how she started all of that with, I鈥檓 just getting in touch because you told us too.聽
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.聽
NIKKI- Yeah. Because I think what鈥檚 interesting about Lizzie there there鈥檚 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.聽
EMMA- You mean the changing table.聽
NIKKI- Table, that鈥檚 it.聽EMMA- So, table in the disabled toilets, accessible toilets, there鈥檚 a changing table but it鈥檚 not for a baby; it鈥檚 for an adult.聽
NIKKI- Exactly.聽
EMMA- Because it鈥檚 assumed that it鈥檚 an adult that will need to change in there, not a baby, because if you have a baby it鈥檚 assumed that you can go into the regular bathrooms.聽
NIKKI- That鈥檚 it. And it just shows, doesn鈥檛 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.
EMMA- Yes.
NIKKI- But for Lizzie they don鈥檛 work. So, it just shows you, doesn鈥檛 it?
EMMA- Yeah, I feel like there鈥檚 an invention coming on here that you should be able to just slip out a panel on it and pull it down.聽
NIKKI- Don鈥檛 say it on air, Emma; keep it in, love. I鈥檝e got contacts on the Dragons鈥� Den.
EMMA- I鈥檒l get on to Remap or whatever. They鈥檙e the ones who move stuff around and invent stuff and create amazing solutions for disabled people. Other inventors are available of course.聽
NIKKI- I love that. Thank you so much, Lizzie.聽
MUSIC- Theme music.
NIKKI- Now, I think me and my next guest are going t get on like a house on fire. I鈥檓 very excited about this. We Insta鈥檇 last night, didn鈥檛 we?
AIDY- We did.聽
NIKKI- Aidy Smith is a drinks writer and one third of The Three Drinkers. That鈥檚 the best gig I鈥檝e ever heard. It鈥檚 a quirky wine enthusiasts programme and it鈥檚 on Amazon Prime. Now, Aidy also has Tourette鈥檚 Syndrome and has been on a journey of discovery for your new, it鈥檚 a Radio 4, isn鈥檛 it, doc that you鈥檙e going to be doing?聽
AIDY- Yeah, it is indeed.聽
NIKKI- Which sounds brilliant. And you鈥檙e going to be tackling public perceptions and all of that. But first hello.
AIDY- Hello.聽
NIKKI- It鈥檚 so nice to see you in person.聽
AIDY- It鈥檚 good to see you as well.聽
NIKKI- I鈥檝e been watching you online and it鈥檚 been fabulous.聽
AIDY- Well, I鈥檝e been watching you as well and I鈥檓 loving the sense of style. We both walked into the studio wearing this really irreverent jacket. You鈥檝e got a gorgeous dress going on there.聽
NIKKI- Ah, thanks.聽
AIDY- It鈥檚 kicked off to a very good start.聽
NIKKI- It really has. We鈥檝e got some printage going on here, haven鈥檛 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鈥檚 got Tourette鈥檚 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鈥檚 Syndrome is defined by tics that are either motor or vocal, and at the time I had both. So, I鈥檇 have this kind of whoop or screech, a bit of a scream, I would have this tic where I鈥檇 clap or I鈥檇 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鈥檚 was, very few. The GP had absolutely zero idea.聽
NIKKI- No!
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鈥檇 get told off. I鈥檇 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鈥檛 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鈥檙e concerned.聽
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.聽
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鈥� evening. She was called Mrs Morrison and she said, 鈥業 think that Aidy might have something called Tourette鈥檚 Syndrome鈥� to my mum. She went, 鈥業 watched a documentary on 91福利社 not too long ago鈥︹�� Surprise, surprise.
NIKKI- Brilliant.
AIDY- 鈥︹�榓nd I think he might have this thing called Tourette鈥檚鈥�. 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.聽
AIDY- Yeah.
NIKKI- And did your life change when you had that diagnosis?
AIDY- I felt a sense of relief. When you actually know what鈥檚 going on inside your mind and your body you do get that sense of relief, like okay, that鈥檚 what it is. But yes, at the same time that鈥檚 when the bullying really starts to come out. And at the age of ten puberty and hormones are coming out there, and you鈥檙e aware of everything that鈥檚 going on around you so much more. The other thing was just all the meds that they just shove onto you. They鈥檇 be like, let鈥檚 just find a cure for it; not let鈥檚 help you lead an amazing life and what can we do for you in a social setting. It鈥檚 here, take these drugs. So, I ended up putting on loads of weight. And so I鈥檇 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.聽
NIKKI- Oh.聽
AIDY- But you know what, one thing I will say鈥�
NIKKI- Go on.聽
AIDY- 鈥s through every hardship we have in life we learn.聽
NIKKI- Yeah.
AIDY- And it鈥檚 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鈥檒l get this, you鈥檒l 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鈥檚 quite beautiful.聽
NIKKI- Yeah.
EMMA- I鈥檇 prefer not to have the bullying though.聽
NIKKI- Yeah.
AIDY- Definitely prefer that.聽
EMMA- I鈥檇 prefer to learn it without that, do you know?聽
NIKKI- Yeah.
AIDY- It鈥檚 a difficult one, isn鈥檛 it, because you also think if we didn鈥檛 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鈥檙e very beautiful and you grow up beautiful and you鈥檙e a supermodel, you never really have to work that hard at your personality because it just kind of all comes. I鈥檓 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.聽
EMMA- A minger! Did you just call yourself a minger?
AIDY- I assure you she鈥檚 not, at all.
NIKKI- A disabled minger. No.聽
EMMA- I can鈥檛 imagine you were ever a minger.
AIDY- No.聽
NIKKI- No, but I鈥檝e blossomed.聽
EMMA- I wish you wouldn鈥檛 say that about yourself.聽
NIKKI- I鈥檝e blossomed, I鈥檝e done all right. I鈥檝e worked on myself, it鈥檚 fine. But I鈥檒l show you a few photos growing up. But you do, you have to work. But that鈥檚 made you. It鈥檚 why you鈥檝e got The Three Drinkers on Amazon Prime and why you鈥檙e soaring in your career.聽
AIDY- I think that has a lot do with it. And when we are younger, I think you鈥檙e right, we look at ourselves when we鈥檙e 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聽 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.聽
NIKKI- Yeah.聽
AIDY- Which is exactly what you鈥檙e both doing here, so thank you ever so much for having so many people on to help these positive messages.聽
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鈥檙e 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鈥檚 and they think he鈥檚 going to swear. That鈥檚 the first thing they think.聽
NIKKI- Yeah. Is that the media that鈥檚 kind of, do you think that鈥檚 a media problem?
AIDY- I think so. It鈥檚 the documentaries that come out that focus on coprolalia, which 10% of people with Tourette鈥檚 Syndrome have coprolalia which is swearing and inappropriate gestures and whatnot. 90% of people do not have it. And don鈥檛 get me wrong, the people that do have coprolalia it鈥檚 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.聽
NIKKI- Yeah.聽
AIDY- I think that it鈥檚 important that movies that are out there don鈥檛 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鈥檚 then what everyone鈥檚 perception of Tourette鈥檚 is. So, I often get me when my publicist is talking to radio stations about being on, 鈥極h sorry, we can鈥檛 have people with Tourette鈥檚 on because they swear鈥�. My publicist is like, 鈥榃ell let me tell you something鈥︹��
NIKKI- Ha-ha, I love that. Aidy, we鈥檙e 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鈥檚 a quirky wine enthusiast programme. We鈥檝e got a little clip; let鈥檚 hear it now:
CLIP- Raspberries, we鈥檙e 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, Poit铆n.
NIKKI- Very quickly, how do you control the urge? Do you still have the urge to tic? From someone who鈥檚 a bit of a Tourette鈥檚 novice here.聽
AIDY- Yeah, we always have it. It鈥檚 there. And the best way for me to describe what does Tourette鈥檚 feel like: it鈥檚 like a mosquito bite. I want you to imagine that you鈥檝e 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鈥檚 or how it doesn鈥檛 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鈥檒l notice in the studio that they鈥檙e barely existent because I鈥檓 having so much fun and I鈥檓 focusing on what I enjoy doing.聽
NIKKI- Love that. And your Radio 4 doc, sum it up in a nutshell for us.聽
AIDY- The Truth About Tourette鈥檚. So, for the first time on radio we look at the positives of this disability rather than it being a deficit.聽
NIKKI- I love that. When is it out?聽
AIDY- It鈥檚 going to come out on 31st May, and then it鈥檚 going to be repeated again on 5th June, and it will be available on 91福利社 Sounds for 12 months.聽
NIKKI- I cannot wait to listen to that. You are a superstar.
AIDY- You are! And you are!聽
NIKKI- Can I see you again sometime?聽
AIDY- I would love to see you all again.聽
NIKKI- I鈥檓 not being inappropriately flirtatious. Aidy, it鈥檚 been a pleasure.聽 [Music] Oh, thanks so much for listening. It鈥檚 been another great show. I鈥檓 loving doing these, Emma.聽
EMMA- I know. It feels like we might be slightly getting into our stride now. I shouldn鈥檛 have said that, should I?
NIKKI- Yeah, it鈥檚 all going to go downhill now, isn鈥檛 it?
EMMA- Yeah.聽
NIKKI- Thank you all. Get in touch. We love hearing from you, and we will see you next week.聽
EMMA- Bye bye.聽





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Presenter Nikki Fox
Presenter Emma Tracey

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