‘It was petrifying’: The family left on the side of the M1

NIKKI- What about the vibrating one? 

EMMA- Yeah, I need a new regular cane. I’ll tell you why.

NIKKI- But the vibrating one sounded so much fun.

EMMA- I know, but you have to charge it. I haven’t had a new cane in so long. The tip that I have got on my cane is a rollerball tip, which is really good for a wooded path.

NIKKI- Oh, I didn’t know where you were going with that, Em.

EMMA- But I cracked it open when I used it as a trekking pole when I was walking those ten miles.

NIKKI- Oh yeah, the one where you got a lift in the old coach halfway through. 

EMMA- Yeah. 

NIKKI- Didn’t quite walk ten miles, did you, Ems?

EMMA- I walked nine miles. But anyway I cracked it open then and I need a new one. And they’ve got these new shock absorber ones because when you’re walking along as a blind person and your cane gets caught on something it stops and you keep walking, and your pubic bone takes the brunt of it. 

NIKKI- [Sniggers] ah.

EMMA- Whereas if it has a shock absorber it kind of will sort of squish down a bit and you’ll be able to move it along easier. So, I’m going to get one with shock absorbers in. The other thing I want to do with the new cane is I was thinking I’ve had a white cane for 41 years…

NIKKI- Jazz it up!

EMMA- …I was thinking I might get a colour. 

NIKKI- Yeah, do it. Leopard print please.

EMMA- I’m like am I going to have to get my colours done like Bridget Jones, or to figure out which colour cane to get, or could you just choose for me? I need one that’ll go with everything, like jeans. I don’t want to look uncoordinated because I already worry about that enough without adding a cane into the mix. And maybe I worry too much about these things, do I?

NIKKI- Yeah.

EMMA- I thought you were going to offer to be my stylist, and then I was worried about ending up in boob tubes all the time. 

MUSIC- Theme music.

NIKKI- This is Access All, the weekly podcast all about disability and mental health from the BBC. Although I’d just like to say on a side note, we’re not just about disability and mental health, are we? 

EMMA- No.

NIKKI- We offer a bit more. 

EMMA- We’re about culture and fun and news.

NIKKI- And music. 

EMMA- And music. It’s all here, guys.

NIKKI- I’m Nikki Fox in London. 

EMMA- And I’m Emma Tracey and I’m in Edinburgh. And do not forget to hit the subscribe button for BBC Access All as soon as you get the chance. 

NIKKI- Would you know what to do if the car you were in broke down on a busy motorway? Disabled people on the Motability scheme are supposed to be viewed as high priority by recovery services, but for one family a failed clutch on the M1 became a four-day ordeal. Sophie Smart was travelling back from Alton Towers on Friday with her son, Karson, who’d been there for his birthday treat. Karson’s got cerebral palsy and epilepsy. And we’ve got Sophie here to tell us all about this difficult bank holiday weekend. My goodness Sophie. Hello. So lovely to meet you. 

SOPHIE- You too.

NIKKI- We’re also joined by Graham Footer, the CEO of Disabled Motoring UK, a charity which supports disabled drivers, passengers and Blue Badge holders. Hello Graham. Not the first time we’ve met. 

GRAHAM- No. Hello Nikki. Good to see you again. 

NIKKI- Tell us what happened on that bank holiday Friday with you and your family on the MI, Sophie, because it’s terrifying really. 

SOPHIE- Yeah, it was. It was really, really petrifying. So, we’d just filled up our tank with petrol and then we got on the M1 and the clutch literally just went. The car is only two and a half years old as well, so you don’t even expect these things to happen. It had not long been serviced. Anyway, the clutch went. We put our hazards on and we removed ourselves from the motorway and put ourselves into the hard shoulder. Also kind of evacuated the vehicle to get Karson into the safest position we could at that time, which I can’t explain how that felt getting my eight year old son in a wheelchair out of the vehicle in the middle of a busy motorway. 

NIKKI- Oh. So, with the Motability car, I know because I’ve got a Motability car as well, you call, they send out the RAC. That’s right, isn’t it, the RAC?

SOPHIE- That’s correct, yes. 

NIKKI- So, I presume when you got to safety is that the first thing you did?

SOPHIE- Yes, exactly that, yeah.

NIKKI- And what did they say? Because presumably like me you would be priority as in they would get to you quite quickly?

SOPHIE- Yes, and that’s exactly what they said. They were shocked that it had happened. They said, ‘Please don’t worry. Remove yourself from the vehicle and get yourself in the safest place as you can, and we will be with you within 45 minutes’. 

NIKKI- What actually happened? 

SOPHIE- We were there for over seven hours. 

NIKKI- Seven hours!

SOPHIE- Luckily there was a lovely man that stopped and gave us McDonalds and a bottle of water. 

NIKKI- Oh!

SOPHIE- Yes, exactly. If it wasn’t for that gentleman – so we administer all of his medication and fluids via his tube – so again, if that man didn’t stop and give us that water we wouldn’t have been able to give Karson his necessary medication. 

NIKKI- So, in all of that time I guess were you pestering RAC? Was there anyone else you called?

SOPHIE- Yeah, we were on call to Motability all of the time, then onto RAC. We called the National Highway several times, I think four or five times, we called those. And we also called the police in which on the third attempt of calling the police they actually hung up on us and told us it wasn’t an emergency. 

NIKKI- Really?

SOPHIE- Yes. I had kept calm at that point, but once we had been hung up by the police I just broke. I was in…I can’t explain. There’s no words to explain how a mother feels in that situation. We couldn’t even call ourselves a taxi to get ourselves home safe because no taxi firms are going to stop on the motorway to pick us up. They were only able to do that if we were stopped by the National Highway or had the police supporting us in that situation, which neither did. 

NIKKI- Graham, you can hear this, what do you make of this? 

GRAHAM- I’m absolutely shocked and flabbergasted to hear this. And I’m really sorry that this has happened to you, Sophie, and your family. This is absolutely unacceptable. Luckily you were able to get yourselves into the hard shoulder. Of course with something like that you’re not necessarily going to be able to do that, and our advice for disabled motorists is that if you break down on the motorway in a live lane then the first thing you should do is put your hazard warning lights on, keep your seatbelts on and either hit your eCall button in the car, which is also sometimes called an SOS button…

NIKKI- Yeah, what is that? I’ve never heard of that, Graham. 

GRAHAM- Most car manufacturers from 2018 onwards have installed what they call an emergency call button in the car. It’s usually a red button, it’s not always red though, and it’s usually up in the central console. It’s sometimes called an SOS button. And it’s designed for emergency calls. Let’s say for instance you didn’t have a mobile phone with you, you can literally just push your eCall button. That will put you through to a 999 operator and then you can explain your circumstances. If you’re in a live lane that is a 999 emergency, so you should get a response to that straightaway. 

NIKKI- What do you make of the police response to Sophie though? 

GRAHAM- Yeah, I think that there’s been a massive breakdown in communication between the agencies here. Initially I cannot understand why you didn’t get a response from National Highways and why they didn’t send out a traffic officer. I don’t understand why the police didn’t respond. And of course these agencies talk to each other. Obviously National Highways would have been talking with RAC as well. And RAC had already given you an estimated time of arrival, an ETA, and then failed to make that ETA. And I’d be interested to know what happened once that 45 minutes expired. Did you contact them again? 

SOPHIE- We probably made 15, 20 phone calls within those seven hours, and we were just given the same information: it’s going to take 60 minutes, we’ll be there in 60 minutes. That was it. 

EMMA- So, we’ve been looking into all this and we’ve been asking all the various bodies for statements, and the police have sent us a statement just now. A Hertfordshire Constabulary spokesman said, ‘We completely understand the frustrations of the family involved and the upset that this would have caused them. Whilst the correct policing protocols were followed on the day, we are in the process of reviewing our contact with the caller to identify any learning opportunities around the way information was communicated to them’. 

We also spoke to National Highways and they said that they were in touch with the RAC the whole way through this. And they said that the RAC kept giving them ETAs as well, so they were expecting the RAC to manage this, they were expecting them to arrive. They kept expecting them to arrive within a certain period of time. And eventually at 12:30 that night they came and the RAC had never been, they believe, and they had to recover the vehicle then. 

NIKKI- Okay. So after the seven hours Sophie, when it was late at night, wasn’t it? 

SOPHIE- Yes.

NIKKI- Friends had to come to your rescue, didn’t they, to take you home? 

SOPHIE- It was half past 11 at night, no idea how much longer we were going to be here, and I was just beside myself; I needed to get my son home to safety. So, we had to call a friend, which was fine, it was great. But I then had to put my son out of his wheelchair and into the back of a car. 

NIKKI- Was there just not enough room for it?

SOPHIE- Karson’s wheelchair is made for him, because of his level of disabilities and cerebral palsy, so it doesn’t fold flat, it doesn’t come apart. And that’s why we had to abandon his wheelchair. 

NIKKI- There’s no way of getting that in any other car, is there, absolutely no way.

SOPHIE- No.

EMMA- And you had to go on a 90-minute journey with your eight year old on your lap in the back of an unsuitable car?

SOPHIE- Yes, it actually took nearly two hours, yeah. 

NIKKI- And how did you get the car? What happened to the car, the car’s still on the motorway? 

SOPHIE- It was put in storage two hours away from our home with Karlson’s wheelchair in it. And of course because it was bank holiday weekend we were without Karson’s wheelchair for four days. 

NIKKI- Four days you couldn’t get it!?

SOPHIE- No.

EMMA- So, what did Karson do for four days?

SOPHIE- He was bed bound for four days, apart from... 

NIKKI- It was his birthday as well, wasn’t it?

SOPHIE- Yeah, yes, yeah.

EMMA- Wow.

SOPHIE- Yeah,  I don’t have any words for that situation. 

EMMA- You were going to say he was in bed apart from what were you going to say? 

SOPHIE- Apart from me and my husband both carrying him out to the garden to put him on the swing just to get some fresh air. If Karson’s not moving he can get very upset, very distressed. It’s important, he has to be taken out every day, he has to be on the move. 

NIKKI- So, how did you eventually get the chair and the car back?

SOPHIE- I phoned Motability. Of course they were very apologetic; they couldn’t believe the situation themselves. But they then turned round to me and said the only way I could recover my son’s wheelchair was to get a taxi, for two hours, to go and collect his wheelchair and get a further taxi back to our home, another two hours. And that’s what we had to do. 

NIKKI- What, like a wheelchair accessible taxi?

SOPHIE- Yes.

NIKKI- But they’re terribly expensive. Did they cover that? 

SOPHIE- Luckily, yes. 

NIKKI- It’s sometimes these things, isn’t it. I don’t suppose if you’re not disabled you wouldn’t think about, but something like the loss of a wheelchair for however long…

EMMA- The length of impact. 

NIKKI- The impact. 

EMMA- I’m sure it’s impacting Karson now the fact that he had to be in bed all weekend. I’m sure it’s still having…?

SOPHIE- Well, do you know what, I’m going to be honest, and that’s why Karson’s very, very unhappy and distressed at the moment, his routine has been broken. He’s very bored, so he’s on high alert on the minute, that’s what I say. His cup is full, he’s not managing very well at the moment. 

EMMA- Yeah.

NIKKI- Really?

EMMA- The RAC did send us a statement. They said, ‘We’ve apologised personally to Mrs Smart for her and her family’s experience after their car broke down, which is in no way reflective of the excellent service we provide to thousands of drivers every day of the year. We are also providing a gesture of goodwill to say sorry’.

GRAHAM- What explanation did they actually give you, Sophie? Because that statement explains nothing. 

SOPHIE- Honestly there was no explanation. His words were, ‘No explanation would be good enough to explain the level of care you received that day’ so he didn’t. I don’t know whether it was traffic. I don’t know whether it was lack of communication. I don’t actually know. 

NIKKI- If you’re a disabled driver or passenger and you’ve got a story to tell us then please do get in touch. You can tweet us @BBCAccessAll, or you can email us accessall@bbc.co.uk. Thank you Sophie and Graham, it was great to have you on. 

EMMA- Did you hear the blind song?

NIKKI- There’s a song? 

EMMA- Yeah. 

NIKKI- Oh my god, stop it. 

SONG- When I call you on the phone, or maybe on the Zoom, you make me smile. When I’m feeling sad, when I’m feeling blue, you make me smile. You make me smile. 

NIKKI- Oh, I love this. 

EMMA- You make me smile. And you’ve got a smile in your voice as well. 

NIKKI- I love this, Em. That is so nice. I’m so happy that somebody actually sent us a song. What’s the guy’s name?

EMMA- His name is Rikki. 

NIKKI- Rikki?

EMMA- And he heard us at the end of our 5 Live which goes out once a week, so he was obviously listening in the middle of the night. 

NIKKI- Our podcast on 5 Live. 

EMMA- Which is fantastic. I love that someone heard us on 5 Live and took the time to write in. And he’s a semi-profession musician and he bought – love this – he bought a four-track tape recorder, like circa 1980s. He’s blind. And this is actually a very accessible thing to do because it’s got buttons and it’s got tape. 

NIKKI- Yeah. I always wanted a four-track, always wanted a four-track.

EMMA- All this digital malarkey takes a bit of learning if you’re blind because you have to find all ways round everything. So, having proper big buttons is great. Anyway, I digress. He sent us a song about not being able to see someone but knowing how amazing they are anyway, and they’re making him smile. 

NIKKI- And I love it. I’m so excited that you actually sent us something and it’s that good. 

EMMA- Well, people keep sending us stuff because this was fantastic. 

NIKKI- Oh my god, please.

EMMA- Rikki, thank you for making our day. 

NIKKI- Ems, did you go for a little seaside dip over the weekend?

EMMA- I didn’t actually. Why are you asking? 

NIKKI- Because of the story that we spoke about last week. 

EMMA- About the beaches?

NIKKI- Yes! Greece making 300 of its beaches accessible. So, I wondered whether that had inspired you to take a dip. Not that you need tracks to get in really, do you? 

EMMA- I don’t, but there’s a bit of a climb down to the beach that we swim at. But no, because the stars need to be aligned for us to go for a swim: we need to have babysitting; the weather needs to be nice, well I think it does anyway; the tide needs to be right. There are a few things at place. We’ve not done it yet but we’re planning to do it this weekend. 

NIKKI- Are you? 

EMMA- Yes. But do you know what, this story did really get people going, and we had some nice feedback about it. 

NIKKI- Yeah, we did. Charlie emailed us to say, ‘I can’t transfer out of my wheelchair without a hoist, which means I can’t access a lot of beach wheelchair schemes. Luckily I live just over an hour away from the amazing beach wheelchair place at Exmouth, which is the only one in the southwest with a mobile hoist. My work had a beach event and made sure we had it there so I could come too. It was amazing to be able to sit with friends on the beach. I even went in the sea, which was absolutely freezing but the best fun’. Charlie did also add, ‘Your podcast is one of the highlights of my week, so thank you everything that everyone does to make it’. How nice is that?

EMMA- That is so kind, and it makes, honestly it made everybody’s week to read that and to know that people are listening and enjoying what we do. 

NIKKI- Yeah. Now, from beaches to something so sad. It stuck with me actually, Emma, this. I don’t know if you remember a story, it was about a woman called Daisy Simpson? It was done a couple of weeks ago by another correspondent called Nicky Fox, who’s based in a different area. But she did the story with Daisy and it’s just heart-breaking. So, Daisy is from Brentwood in Essex, and she’s got 17 different health conditions, including Moyamoya disease, I hope I’m pronouncing that right, which affects just one in a million people. Now, Daisy has been stuck in her bedroom for more than two years while she’s been waiting for an adapted house. The reason why she’s having to stay in her bedroom is because her wheelchair doesn’t fit through the doorways in her current flat, so she can’t even access the bathroom unless her support staff wheel her through in an office chair. 

We got in contact with Brentwood Council who said that they’ve identified a property for her, but it requires extensive work. But as someone who is receiving end of life care Daisy says she doesn’t want to spend her limited time in limbo waiting for an accessible flat. 

EMMA- Yeah, and we’ve heard a number of stories of people in situations where they’re waiting on adaptations, but it’s particularly sad and upsetting when it’s someone in end of life care. 

NIKKI- So, we asked Daisy to update us on the situation and she sent us this voice note:

DAISY- So, since the BBC news article on the news came out there’s been nothing in progress really. I’m feeling a bit deflated, very desperate and generally not sure what else to do. It gets to a point where you seriously start considering tying yourself naked to a fence with a placard or something saying, Please Help Me. I’ve not really heard anything from the council. There’s been no further progress. The property that they have allocated still remains empty and with no works starting. And it’s heart-breaking really considering I’m on palliative care, meaning that the whole point is to provide seamless and coordinated care for patients in their last year of life. And I literally have nothing. And I don’t know sometimes if I should cry, or laugh and cry, just because this has become almost farcical that I’m in this situation. 

My next steps are to try and remain sane, keep battling away somehow and find some magical resource somewhere within myself to do that. And I’m not sure how because this is getting very desperate. And it’s very hard when you are really poorly to keep having to fight such a broken system. And I think part of the frustration is it really does not need to be this hard. 

EMMA- Amazing that Daisy was able to send us that voice message. 

NIKKI- I know. It’s not being able to get out and about. 

EMMA- Yeah, she sounds at the end of her tether, and not surprising. 

NIKKI- The council has sent us a statement which we have got here:

COUNCIL- Brentwood Borough Council is aware of Miss Simpson’s case. We are striving to speed up a move for Miss Simpson as quickly as we can, whilst adhering to the necessary procedures to complete this work. In addition we are looking to find a suitable interim home for Miss Simpson whilst works are carried out. 

NIKKI- We’re going to keep on top of this as well. I’m going to keep in contact with Daisy. So, thank you for that voice note, Daisy. If any of you have or are currently experiencing something similar get in touch with us. 

If you’re looking for a mythical adventure story to get stuck into, author Lizzie Huxley-Jones might have just what you are looking for: Vivi Conway and the Sword of Legend has all the mystical Welsh drama you could ask for. And luckily for you all, it’s just been released. And luckily for us, Lizzie is in the studio. Thank you so much for coming in. 

LIZZIE- Thank you. It’s so nice to be here [laughs]. 

NIKKI- It’s such a treat having you actually in with me in person. I absolutely love it. Now, do you want to give us a flavour of what the book is about, for listeners who haven’t read it yet?

LIZZIE- Yeah. So, the story starts with Vivi moving, she’s moving from Wales to South London, and they’re about to go but she’s like, oh, there’s this weird thing happening where the lake keeps talking to me, you know, casual. And she goes for her last swim, and accidentally finds a monster, a sword – and it’s that sword, Excalibur. 

NIKKI- It’s that sword. 

LIZZIE- It’s that sword, although it’s smaller than she was expecting. A new friend that she really doesn’t want, who’s insisting that she’s part of this magical prophecy, this group of witches called the Caloni, who have to stop King Arawn from taking over the world. And also a ghost dog, who is really annoying. 

NIKKI- Your main character, Vivi, is autistic. 

LIZZIE- Yes.

NIKKI- You are also autistic. 

LIZZIE- I am [laughs]. 

NIKKI- Now, that doesn’t mean that just because you’re autistic you’ve written a character exactly like yourself. 

LIZZIE- No [laughs]. 

NIKKI- But are there elements of your life and experience in your main character? 

LIZZIE- Yeah. I think when you’re a writer it’s impossible to not put little bits of yourself and your world into it. So, Vivi really comes from a point in my life that was true, in that when I was moving from primary school to high school I had been bullied; but I wasn’t moving to a different country. But I also didn’t know I was autistic then; I didn’t find out until I was an adult. So, that is one major difference. 

NIKKI- You were talking about when you were diagnosed with autism. Can I ask a little bit about that and what that was like for you when you got it was it a good thing or a bad thing? I always wonder with labels, do you think hurrah that makes sense now, my life makes sense, or is it actually it doesn’t make much difference? 

LIZZIE- I think for me it definitely was like, oh this is what it was. I couldn’t understand why I wasn’t coping in the same way as so many other people were. And it was because a friend I was really close with got diagnosed, she literally sent me like a blog post that was all the characteristics of autistic adults who have masked a lot. And I read it and I was like oh my god, this is like my diary. 

NIKKI- I was reading that before your appointment for the diagnosis did you not present whoever it was with like a 50-page dossier? 

LIZZIE- Yes! It was 13 pages long yeah [laughs]. There’s a lot of discussion about this so I probably should talk about it. But I originally went on the NHS and the only person they could send me to, as a 25, 26 year old, was a child psychologist. 

NIKKI- Oh wow. 

LIZZIE- Yeah. And so understandably she did not diagnose me with autism because she was not used to understanding it in adults, and said, ‘You’ve been on a plane, you can’t be autistic’ which is my favourite sentence in the world. 

NIKKI- Really?

LIZZIE- Yeah [laughs]. Even, you know, just very silly things. 

NIKKI- Wow. 

LIZZIE- And so I was like, I think she’s wrong. I went to see a psychologist that the NHS had referred me to and he was like, ‘They’re barking up the wrong tree, you are 100% autistic’. And he was like, ‘Do you want me to get you onto another referral pathway?’ And by that point I’d already planned to go private and see a specialist that I’d had a recommendation from. In the end I was like, ‘No, do you know what, you just saying this is enough for me to be confident in going through with this’, and I did. And they said that they clocked me five minutes after walking in. And I think the 13-page dossier definitely helped with that. 

NIKKI- That’s brilliant. 

LIZZIE- Yeah, I just like to be prepared [laughs]. 

NIKKI- No, I love that. All of the characters in this group that’s going to save the world they’ve all got their own disabilities. I guess you know about autism from your perspective, but with other disabilities did you have to kind of gen up on that? 

LIZZIE- Yes, definitely. So, Stevie has a limb difference, and I have someone in my family with a limb difference, but I did a lot of research. We had a sensitivity reader come in. 

NIKKI- What is a sensitivity reader? 

LIZZIE- A sensitivity reader is a really specialised editorial consultant that you hire to come in and read your book and look at a particular character and the story and how those things interact, and give editorial advice. So, it’s something I actually do a lot in the children’s industry specifically. I read a lot for autism and broader disability stuff as well, and advise on books and making sure that they’re inclusive. It’s a really good thing. 

NIKKI- I love that. 

LIZZIE- I’m writing the sequel at the moment. I’m halfway through, which is great. And the character in that, the new character, I’ve given her Ehlers-Danlos syndrome, which is something else I have. For those listening, it’s a problem with the connective tissue in your body, your collagen. And everyone loves a bit of collagen, like in you face, plumping. But mine is really wonky and is more like chewing gum that has been unchewed [laughs]. And because collagen is in every single tissue in your body it means that I have loads of random problems, because it presents very differently. But the one that most people will recognise is that my joints will dislocate or partially dislocate, which we call subluxation, pretty much all the time. So, I’m on a walking stick today, but at home I have a mobility scooter in the exact same bright red as you. 

NIKKI- Hallelujah. 

LIZZIE- It’s the best colour [laughs]. 

NIKKI- Do you like the pink arms as well? 

LIZZIE- Oh my god, they’re so good. 

NIKKI- Gaffer tape. 

LIZZIE- I love it. I really need to jazz mine up. My friend got me a Mario Kart shell to put on the front. 

NIKKI- Amazing. 

LIZZIE- And I’ve got a little basket and a coffee cup holder. 

NIKKI- Ooh hello, I need a coffee cup holder. 

LIZZIE- The one’s for prams they’re adjustable, they’re so good. 

NIKKI- There you go, that’s a great idea. 

LIZZIE- And cheaper. Because all the stuff where it’s specific for mobility aids it’s like for some reason £30 more expensive. 

NIKKI- Oh, there’s a 50% markup for sure. 

LIZZIE- Exactly. 

EMMA- And looks rubbish. 

LIZZIE- Yes!

NIKKI- We need to do a whole other episode of this. 

LIZZIE- Yes.

NIKKI- But seriously, EDS can be quite painful, can’t it? 

LIZZIE- Yeah, really painful. I’m on a good pain day today in that I would probably say I’m on a five out of ten in terms of pain. And that’s a good day for me. And I think that kind of surprises people how much a lot of disabled people just live with pain. 

EMMA- So, how does the Ehlers-Danlos Syndrome and the symptoms that come with that how do they affect your writing process, so how you write day to day, how your books come about? 

LIZZIE- That’s actually a really pertinent question. One of the ways Ehlers-Danlos presents for me is I get seizures, which is linked to my blood pressure and how my brain literally processes stuff; it’s all kind of linked together. But because of that it means that I often lose bits of my memory. And so when I’m writing I’m a real recorder. That 13-page dossier was a sign. I have spreadsheets, I have outlines, I will write everything down. Except this month [laughs] I was writing the sequel and at one point the dog disappears, and I did not write down why. And then I had a seizure and I have forgotten why the dog is missing [laughs]. So, I’ve just been still writing like, hmm maybe I’ll remember it, or I’ll come up with a better idea of where he is. 

Documenting is probably the major thing. But also I’m very, very strict with actually how much work I do. I write entirely in sprints, so like Pomodoro’s of 15 to 20 minutes. 

EMMA- Oh, the tomato timers. 

LIZZIE- Yes. 

EMMA- I use those as well. 

NIKKI- What’s that? 

EMMA- You just stick a timer on. 

NIKKI- What is a pomodoro? 

LIZZIE- So, most people do 25 minutes of hard concentration and then a five-minute break. And you tend to do four in a row, and then you get a nice longer break. I don’t have the stamina for that [laughs] so I tend to do 20 minutes and then ten minutes of just faffing around. But it means that I can kind of tune into my kind of autistic hyper focus in small bursts that kind of makes it powerful, get those words written. 

NIKKI- Pomodoro, why is it a tomato timer? 

LIZZIE- I don’t know. I think that’s just what someone called it. 

EMMA- Some fella just came up with it. I use it all the time. 

LIZZIE- It’s so good. 

EMMA- And what about the pain of the Ehlers-Danlos and the writing? 

LIZZIE- The answer is painkillers, and then I just lie down, like I lie down a lot [laughs]. And if it’s a really bad pain day I am not writing at all because I can’t sit up. One of the problems I have is that my fingers dislocate a lot, and obviously that’s not great if you’re trying to write. So, it’s really kind of working with where my body is at that specific day. I find that some element of a routine kind of helps train my body into doing it, because writing is really physical. You’re there, you’re hammering away at a keyboard, you’re sitting. And I think a lot of people wouldn’t necessarily think of the physicality of it. But as I get going further and further through a book I have to get the old KT tape out and start taping up my shoulder because it starts dislocating. 

EMMA- KT tape? 

LIZZIE- Oh yeah. 

NIKKI- I’ve seen that. 

LIZZIE- It’s like kinesiology tape – I can never say that word. But it’s like colourful tape and you put it on in specific ways and it helps your brain recognise where the limits of your joint is, so it keeps it in a more normal range. And it is honestly one of the most useful things for hypermobile people, because I have no concept of where my range is; I’ll just keep going until it falls out [laughs]. Which is why yoga is the worst thing when they’re like, go until you feel the burn. I’m like the burn does not exist [laughter]. 

NIKKI- What I also love about you is you studied marine biology, didn’t you? 

LIZZIE- Yes, that’s true. 

NIKKI- And you worked as a research scuba diver in the Philippines. 

LIZZIE- Yes [laughs]. 

NIKKI- What made you switch to writing? 

LIZZIE- It’s not a super happy story, but basically I developed a seizure disorder. And the problem with scuba diving 30m below water is it’s not super great if you have a seizure. And I’d been on Twitter and social media for so long that I knew that I was good at writing, I had a good kind of voice and I knew what brands should be doing, so I was like I could probably do this for charities. So, that’s why I made the pivot.

NIKKI- So, just remind listeners about your book. When’s it out? 

LIZZIE- It’s out now. It’s Vivi Conway and the Sword of Legend. You can pick it up in paperback in any good book stores, or ask them to order it you in [laughs]. But yeah, that’s it. 

NIKKI- Oh, it’s been so lovely having you on. Lizzie, you are a superstar. Thank you so much. 

LIZZIE- Thank you for having me. 

NIKKI- Well, Lizzie Huxley-Jones was a brilliant guest to have in, wasn’t she?

EMMA- She was. She was such a ray of sunshine. And you do like having them in the studio, don’t you? 

NIKKI- I love them next to me, Ems. 

EMMA- And if you want to listen to some more disabled authors, we’ve had quite a few in our year, you can look back over the archives on BBC Sounds or wherever you get your podcasts, because we’ve got Jenny Ireland, we’ve got Thomas Leeds and Chloe Timms, all three of them absolutely fascinating people in my opinion. 

NIKKI- Have a butchers. Go mad on the authors. But until next time everyone, goodbye. 

EMMA- Goodbye. 

[Trailer for Americast]

JUSTIN- So, Sarah, we’ve been asked to put together a trailer for Americast. What do you think we should put in? 

SARAH- Well is it too obvious to just say we’ll be covering all the bigger stories that are coming out of America?

MALE- There’s a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don’t seem to matter anymore. 

JUSTIN- I think that works but it’s, well it’s not just that, is it? We need to talk as well about the undercover voters investigation, what’s happening online, what everyone’s getting in their social media feeds. 

FEMALE- What they allow us to see is what someone who has a specific set of views or is from a specific demographic or a specific place might be seeing on their feeds. 

SARAH- And of course we’ve also got to mention all the amazing guests and experts that we have on the show helping us understand the stories. 

FEMALE- This is a great talking point for him in the court of public opinion, but it is not going to go very far in a court of law. 

JUSTIN- And Americast of course isn’t just about politics and news, is it? Can we get something in about the more cultural, the social stuff too? 

FEMALE- It kind of is in keeping with the conversations that we’re having in this country about race and colonialism and the legacy of those things. 

SARAH- Yeah, as long as you include that I think that about covers what we do. 

JUSTIN- And then all I need to say at the end is: Americast is a podcast from BBC News, and you can find it on BBC Sounds. 

SARAH- Yeah, well you have just said that.