91Èȱ¬

EMMA- What I want to know is couldn’t you just go on the Masked Singer?

NIKKI- Well, I mean hook me up ITV. Honestly, that’s the one job if somebody asked me I wouldn’t think twice about saying yes.

EMMA- Would they hide the wheelchair or would that bring their options down as to who it actually is? Because you’d give yourself away with the wheelchair, wouldn’t you, or the scooter?

NIKKI- No, I’ve given thought to this, Ems. I’d be inside a whole kind of mechanical suit which could be, I don’t know, a bunny or whatever the hell they want it to be.

EMMA- Not a jacket potato or a pile of rubbish. An animal?

NIKKI- That show would give you the opportunity to be able to practice. You’d have the time to practice, which I never do. My old PA bought me a karaoke set and I’ve never had time to have a go at it. 

EMMA- Tell me more about this mechanical suit that you’ve got in mind. Would it have the wheelchair included or…?

NIKKI- Yeah. So, the wheelchair would be inside. It’s obviously going to be very big so people won’t be able to guess my height. But we don’t want to give away the fact that I’m knee high to a grasshopper because I’m on a chair. So, I’m thinking circular. And it’s got to have enough room so I don’t bash into it, so when it moves, because it would have to be really, really fancy, the crew would have to move it remotely, I could move underneath it, so not giving the game away.

EMMA- So, it would be moving independently of you?

NIKKI- Yeah, people don’t think she’s disabled. But the taking it off I would be worried about. Because I told my sister this and my sister was like, ‘Yeah, like you’ll be able to take it off’.

EMMA- But the whole point of the show is that you sort of whisk the mask off, take it off really dramatically.

NIKKI- Yeah, that’s not going to happen. 

CLIP- Who’s behind the mask?

NIKKI- It’d be like take it off, [snores], take it off, [snores], take it off, [snores].

EMMA- It’d be the News at Ten and they’d still be going, take it off, take it off.

NIKKI- The disability correspondent of the 91Èȱ¬ is still trying to take her mask off. 

MUSIC- Theme music.

NIKKI- It’s another Access All podcast. Thank you so much for joining us. I’m Nikki Fox and I’m in London. 

EMMA- And I’m Emma Tracey and I’m in Edinburgh. 

NIKKI- So, every week we bring you the news, interviews, and we often go a bit too personal, don’t we, about our own disability. 

EMMA- Yeah, we go there where others might not.

NIKKI- We go there. 

EMMA- Subscribe to us on 91Èȱ¬ Sounds or wherever you get your podcasts. And do tell your friends about us if you think our pod might suit them, which of course it will suit them. 

NIKKI- Yeah.

EMMA- Why wouldn’t it? 

NIKKI- Now, I feel guilty about asking this because I’ve got the concentration of a goldfish, but please keep listening, stick with us, don’t just turn us off after ten minutes because we have got a fantastic interview with an author, Thomas Leeds is his name. And he has written a new children’s book that you may have already heard of, it’s called Jayben and the Golden Torch, which cleverly uses his own experiences of brain injury and epilepsy in a story that’s set in a world of elves and fantasy. And I’m sure it’s going to get made into a movie. 

But until then we’re going deep. Well, our guests today are Howard Thorpe and Steven Morris. Say hello everyone. 

HOWARD- Hello.

STEVEN- Hello everyone. 

NIKKI- I’ve got Howard in the studio and Steven online. And today we’re doing something a bit different, aren’t we, Em: we are going to be tackling loneliness. And we’re also going to explore why it’s different for disabled people, because we all experience loneliness disabled or not, but I think when we are disabled there are other issues. So, we’re going to get into that. 

Now, before we start as well, it is a tough old subject, but we’re going to make sure we talk about solutions. And how are we going to do that, I hear you all ask. Well, I’ve appointed, I don’t know if she knows yet, Emma Tracey to be our solutions champion. Do you like that, Ems?

EMMA- Well, I’m not used to being a champion to be honest.

NIKKI- You’re my champion. 

EMMA- Not being sporty or anything. Ah, thank you. Yes, solutions, ideas, I think I don’t have the key to get rid of loneliness in any way, but there are some ideas of what people are doing and what might be done in the future.

NIKKI- Yes. Now, I don’t know if anybody was watching The One Show, it was on earlier this week, you’ll have seen that I went to a gig in London at the Hard Rock Café, and it was set up by the man that is in the studio with me, I adore him, I’m just going to put it out there, his name is Howard Thorpe. Now, he had loads of famous people knocking around the joint, didn’t you, and we had actor, Neil Morrissey, he was the MC for the evening, Vicky McClure and Adrian Dunbar from the Line of Duty, and headlining was Frank Turner and he was brilliant. And we’ve got a clip of him here:

FRANK- There are sort of various bits of campaigning I do tend to be music adjacent. So, I care about disabled rights. But Able2UK is a music disabled rights charity, and I feel like I have the right to speak on topics related to gigs and music because that’s what I do for a living. 

NIKKI- Yeah, access as well, because loneliness is a very complex issue when it comes to disabled people because there are many reasons for it. 

FRANK- Sure.

NIKKI- And one of those being accessibility and just being able to get out and have a good time, isn’t it?

FRANK- Sure, yeah. 

NIKKI- And I wonder, have you seen venues change over time? 

FRANK- Yeah, I have.

NIKKI- Does it get better when it comes to accessibility? 

FRANK- Again, I feel like it’s a thing that people finally, I suppose might be the word, starting to pay attention to. But it’s getting better. The example I always think of is the Tabernacle in Atlanta Georgia. It’s a 3,000 cap venue in Atlanta which I have been fortunate enough to play in a number of times in my life. They’ve changed it. It’s a big room, it’s a bit like Hammersmith Apollo, that sort of vibe, and they’ve moved the disabled area. And in fact I don’t know where it was before, which says quite a lot as somebody standing on the stage. But now it’s at the front. It’s on the barrier, it’s to one side, but I’d say it’s about one third of the front barrier is the disabled section. And as far as I understand this – and don’t quote me on this, he said into a microphone – they can extend it or decrease the size of it depending on how many people need it. 

NIKKI- Oh, that’s great.

FRANK- Because one of the things I’ve encountered recently is that there are venues that will have disabled areas and facilities, but then sell out.

NIKKI- And it’s like survival of the fittest. When Kate Bush went on sale, honestly Frank, I had to take a day off work. 

FRANK- Right yeah, I can imagine. 

NIKKI- And I was getting really angry about other disabled people. I was like I got in there first, love. 

FRANK- I had on my last UK tour a couple of occasions where the show itself wasn’t sold out completely, but the disabled area was. And then I get a message from somebody saying, I want to come but I can’t. And it’s like that’s the whole thing we’re trying to stop. 

NIKKI- This is how I got to know you, Howard, it was a couple of years ago. You do this all off your own back. The first concert that I went to that you put on was very accessible, you even had high dependency toilets there. 

HOWARD- Yeah.

NIKKI- I don’t know whether that’s the right word. 

EMMA- Changing places, isn’t it?

NIKKI- Changing places, that’s right, Ems. And guide dogs were allowed; you had areas for people with autism if they needed a bit of quiet time. It was brilliant. You had loads of acts there, fab. The latest one that I went to again for The One Show that was for your Stop the Shadows campaign. Now, that was all about loneliness. Let’s get into why you have tackled loneliness. Because between the time that I first met you and now you have had a tough time, haven’t you? 

HOWARD- Yeah. To be honest feeling isolated began in my teens. I went to a mainstream school because my parents put up a fight, so I didn’t go to a special school or whatever you call it nowadays. But I was bullied every day. I mean, I got called a cripple or spastic two or three times a day.

NIKKI- Every day?

HOWARD- Yeah. And it really knocked my confidence. When I left school I didn’t have many friends. And I do remember I went away for a couple of days, I disappeared, and my parents were understandably very worried indeed. When I came back my parents said to me, ‘Howard, why did you go away?’ The room went completely quiet and then I burst into tears saying, ‘Because I am so lonely’. Then I got a job. 

NIKKI- You loved that job, didn’t you?

HOWARD- Yeah, it was great. I was there for 31 years. Unfortunately last year I had just lost my dad to cancer, and mum was diagnosed with dementia, but they still made me redundant. 

NIKKI- What was the reasoning they gave you? I mean, were they just blaming it on cutbacks?

HOWARD- The company had to close quite a few offices.

NIKKI- So, your life dramatically changed then in quite a short space of time. 

HOWARD- Yeah. So, I said to myself, I’ve got two options: either to just feel bad and feel worse and maybe end up with depression, or to do something about it to keep myself occupied. And I launched this Stop the Shadows campaign under the Able2UK umbrella.

NIKKI- You go to gigs and you do all of that. You do have seemingly quite an outgoing life, yet you’ve said to me on occasions you still feel chronically lonely.

HOWARD- Yeah, because what some people don’t understand, say I go to two, maybe three gigs a week, that sounds incredible. 

NIKKI- Yeah.

HOWARD- But that means for four nights I’m home by myself. 

EMMA- And Howard, you talked about friends and you talked about parents; what about partners and relationships? 

HOWARD- I’ve never been in a proper relationship. I mean, I’m no angel, but I’ve never had that special person. When I do then I will probably take a step back from music, go to far less gigs and just be happy.

NIKKI- You are a brilliant guy. You’ve got the most amazing personality. You’re hilarious. A very dapper dresser. 

HOWARD- Thanks. 

NIKKI- No, you are. Why do you think you’ve not had a partner? Not that it’s for everyone; it’s not for everyone. 

HOWARD- Well, I tried online dating for two or three years. That didn’t quite work out. If I knew the answer to that question then I would like to think I could turn it round. 

EMMA- Yeah. I think there are loads and loads of disabled people who have similar experiences to you in that area, and I think it’s really helpful that you’ve been public about that as well because I think people will feel actually less lonely and alone for hearing that. 

NIKKI- Yeah. Do you think also as well, Howard, when you’re disabled – this is not at all scientific; this is just my own personal thoughts – but I know that my sister and I are both disabled, have a really close bond with our parents, and that’s just luck and all sorts of things. They’re also incredibly lovely people. But also they have looked after us in other ways that maybe somebody who wasn’t disabled would have experienced. Do you think that’s what makes a bond closer and that’s what makes the feeling of losing somebody like your mum or your dad even harder?

HOWARD- They were my rock. And thanks to my parents I have so many amazing memories. And they made me the strong person I am today.

EMMA- Shall we bring Steven in here? 

NIKKI- Yeah, I was going to say.

EMMA- Do you have that feeling about people around you that you have different relationships with them because of your impairment? So, you’re blind, you’ve got hearing loss and you’ve recently been diagnosed autistic as well. 

STEVEN- Yeah, that’s correct. I think that’s a really good question. And actually until Nikki asked it just now it’s something that I hadn’t really thought about. But yeah, I think it is absolutely true that obviously you potentially develop these closer relationships because your parents or your partner in my case, they can be your carers as well as your partner or family member. So, I think there are kind of potential challenges of losing somebody that close must be incredibly difficult. At the time when I met my partner I was at a really low ebb in terms of loneliness. 

EMMA- Why were you at a low ebb?

STEVEN- I was born completely blind, but as I grew up I was kind of living through my hearing deteriorating in noticeable amounts. It was only in the last ten years or so that I had cochlear implant surgery, which has made a massive difference to the amount that I am able to hear. Before then I was living quite a long way away from family. And I did make a few friends, but with the nature of my hearing deteriorating I found social situations really difficult, and I kind of found myself in a catch-22 kind of situation where I was always really sad if I wasn’t asked to things, but then when I was asked to things I didn’t want to go because I knew how difficult they would be. Certainly my experience was that it’s actually possible to be surrounded by people but to still actually feel lonely. 

NIKKI- You’re listening to Access All on 91Èȱ¬ Sounds. Today we’re talking about how disabled people experience loneliness differently, and we’re also throwing in a few solutions as we go. It would be good now to talk a bit about solutions I think. I also want to talk about Howard’s celebrity status, but we’ll get to that at the end. But solutions wise, Steven you work for the charity Sense. Am I right in saying Sense are the charity that supports people with quite complex disabilities? 

STEVEN- Yes. Loneliness has been an issue that Sense have been working on for many years. 

NIKKI- You’re doing some more work on it at the moment. But the most recent figures you’ve got from last year were stating that more than half of disabled people can be described as chronically lonely. 44% of disabled people believe the best way to tackle social isolation is to improve public understanding and awareness of disability; which is very much what your gig was about, wasn’t it, Howard?

HOWARD- Yeah.

NIKKI- 51% of disabled people say that the best way to tackle social isolation is to introduce more community activities where people can meet; which again comes back to the gig. But also you are doing something about it working with Sense, aren’t you Steven, because you are what could be described as a buddy. Not to be confused with gig buddies, that’s entirely different. 

EMMA- And I will talk about them very soon. 

NIKKI- Yeah, Emma’s got more on that. But just explain what you do as a buddy and how it helps. 

HOWARD- As you mentioned our work has found that loneliness disproportionately impacts disabled people. it was a serious issue before the pandemic, but now we’ve had the double whammies of the pandemic and also the cost of living crisis, which has also put pressure on people’s finances, which has meant that many of the people we spoke to have had to cut back on their social activities, so going out and meeting friends and family, which obviously increases isolation. And one of the things that Sense do is we run a buddying programme. It’s a programme where disabled people can meet up with a buddy, they can hang out in the local community and explore similar interests that they have. Obviously during the pandemic we had to deliver that service in a different way, so we launched our virtual buddying programme where a disabled person and a volunteer meet up online for an hour each week doing virtual baking together, they do craft activities. And I’m a volunteer on the buddying programme, and I work once a week with a young man who’s got a range of disabilities. I have a buddy as well, and again it’s very similar, we meet for an hour each week. Mainly we talk about sports, I’ve got to be honest. 

NIKKI- I love that. 

EMMA- So, I just love that Steven is helping someone and being helped as well by the Sense buddy system. Gig buddies, that we mentioned earlier, is one for people with learning disabilities. And the buddies they sign up to go to at least one gig a month. It’s really successful. It’s all over the UK. They’ve started it in Australia. There’s a new one starting in New Zealand. They’re a part of someone’s PhD at the moment. They surveyed the people with learning disabilities who use gig buddies and they said 90% said that having a gig buddy makes them feel less alone, which is fantastic. And 70% said they’d made more new friends outside of their buddy. And 76% said they are more aware of ways of using their spare time. Because I do think that can be a bit of an issue, can’t it, like figuring out what to do, especially when you don’t know whether something is inclusive or aimed at you or not. And that’s where the Marmalade Trust charity, which is one of the foremost loneliness charities in the UK, their head of operations is a wheelchair user, Lucy, and she wrote a blog post recently about loneliness and how people with physical impairments could maybe relieve some of their own loneliness. Lucy said tell your loneliness story, so talk about the barriers you have to other people so that they actually know what’s stopping you from doing the thing or what's stopping you from picking up the phone. So, actually talk about it. 

NIKKI- That’s what you’ve done as well, isn’t it, Howard, you’ve been quite open. I didn’t expect you to be quite so open actually. 

HOWARD- Nor did I. Up until a couple of years ago I didn’t think I would ever go public. And since launching Stop the Shadows campaign, even some of my friends who have put up with me for over 20 years or so, one actually said to me only now it hit him that I do feel lonely. 

NIKKI- Yeah. Because I know you, I remember when we filmed together the first time, honestly Emma, we were filming for 91Èȱ¬ News, Howard was on Facetime, I was with the lovely Libby Quinn who’s been my PA for yonky doodles. Howard goes, Libby, Libby, come here. Libby went behind Howard, had a look into the iPad, he’s Facetiming Mark Wahlberg and Will Ferrell. 

HOWARD- People say to me how the hell do you know Mark Wahlberg. But again, late ‘90s there was this annual pop concert.

NIKKI- The Smash Hits.

HOWARD- Yeah, there was this new act called Marky Mark’s Funky Bunch. 

NIKKI- Marky Mark.

HOWARD- Yeah. I phoned his publicist. I go into message, on my own, can I come backstage and meet this Marky Mark guy. And it happened. I was thinking it was going to be a quick, hi, how are you, and that’s it. And we spent the day together backstage with Kylie. 

NIKKI- Kylie and who else?

HOWARD- Oh, all the bands. 

NIKKI- All the bands, right okay.

HOWARD- And the publicist filmed everything. And a few years later Marky Mark became this Hollywood film star, Mark Wahlberg. He was coming over for the Planet of the Apes premier. I meet Mark, we go to the screening, go the party at the Ministry of Sound.

NIKKI- Amazing. 

EMMA- Ministry of Sound, right.

HOWARD- I go upstairs and Mark goes, ‘Howard, let me get you a beer’. I can’t drink, I’m driving. Stay with me. As we’re leaving the party Vanessa Feltz comes up to me...

NIKKI- I wasn’t expecting that, to be honest with you, I wasn’t expecting Vanessa Feltz.

HOWARD- And she went, ‘Can you get me to meet Mark Wahlberg?’ I said, no. 

NIKKI- Howard!

HOWARD- What?

NIKKI- Vanessa Feltz is a good woman. 

HOWARD- Me and Mark have been friends ever since. He took me in a helicopter once to Top Gear. 

NIKKI- Do you remember that appearance when Mark Wahlberg got drunk on the Graham Norton Show? 

HOWARD- I’ve got no idea what you’re talking about. 

CLIP- That’s wrong, Mark. Don’t touch the man there. 

NIKKI- That was you. That’s true. 

HOWARD- I’ve got no idea what you’re talking about. 

NIKKI- Howard was backstage getting him drunk. That’s why he sat on Graham Norton’s lap. 

HOWARD- No comment. I was there that day. When I got the phone call saying dad had passed away I text all my mates, and within five minutes Mark Facetimed me to make sure I was all right. He has a heart of gold. Society has come on leaps and bounds with improving access, more inclusive. But what I think has been left behind is the emotional side to having a disability. Composing and sending a text takes less than 30 seconds, even for me with my crap hands. But it has a large effect on the person who receives this. So, anyone who’s listening to this podcast now pause it for…

NIKKI- Not too long, Howard, not too long. We don’t want listeners to drop off.

EMMA- Yeah, and pause it definitely, don’t turn it off, pause it. 

NIKKI- Yes, definitely just pause it. Carry on Howard. 

HOWARD- Text a friend who you think feels lonely or isolated.

EMMA- Thank you so much Steven Morris for coming on. 

NIKKI- Yes, than you, it’s been amazing. 

STEVEN- Thank you. It’s great to have the opportunity to talk about such a vitally important issue. 

NIKKI- And Howard, you know how much I adore you.

HOWARD- Thank you. 

NIKKI- It’s the stuff of publishing dreams, when Thomas Leeds wrote his first book, Jayben and the Golden Torch, no fewer than ten publishing houses tried to get their mitts on it. It hit the UK bookshelves this week, and it’s out in Australia and New Zealand later in the month. But it’s not all been plain sailing. Thomas told his story to our team at an event we put on in Edinburgh a few years ago. 

THOMAS- My name’s Thomas and I’m a writer, which is something I never thought I’d be able to do. What I love about writing is I can give me stories a beginning, a middle and an end, they make sense, they feel complete; unlike my own life story. Surprise, I have a brain injury. It’s hard to tell I know, as I like to keep my brain on the inside. I survived a pretty nasty road accident when I was 19. I was very lucky just to wake up. I’d broken my back, but although it was painful I could walk and talk, which was amazing. But a lot was missing. I was alive but not the boy who had crossed the road that night. He was gone. I had lost my childhood memories. 

NIKKI- That must have been such a tough time. As part of his recovery Thomas learnt to read and write again, and was inspired to write a fantasy adventure with a lead character who also has a brain injury. He’s taken a break from writing his second book to join us in the studio. It’s only Thomas. Hello Thomas.

THOMAS- Hello.

NIKKI- Now, your life story is pretty astonishing, I mean it really is. Can you just give a recap as to what happened to you as a teenager, for listeners who don’t know? 

THOMAS- Yeah. So, when I was 19 I was in a pretty serious road accident and I suffered a pretty serious head injury. I was hit by a car, landed on my head, broke my skull and there was a big bleed in my head, and broke my back in a few places as well, you know as you do. And then they had to operate to take out this quite a big clot, so the brain damage was quite severe. But it was also, as a lot of the time is the case with brain injuries, it affects the brain in different ways. So, I was very lucky to have some abilities. But the big one was obviously my memory, I forgot everything. And it’s kind of weird when people ask me about it now because I don’t remember feeling, because I didn’t really know any different, so it took a while to realise how weird that was. I mean, I knew everything around me was weird, but I didn’t know how weird I was. So, it was confusing. And also I lost the ability to recognise faces, so even once I got to know who my mum and dad were and had new memories of who everyone was and what we had talked about or whatever, when it would come back I wouldn’t recognise them again. So, they weren’t quite sure, all these things, it took a while to iron out. 

It was weird because for a while I was just kind of wonderstruck by everything. And the neurologist said that it’s normal to have this sort of chemical imbalance where you might be more happy than maybe might have been. So, I just remember being a bit like a baby, just being like wow what is this, what is this. It wasn’t until quite a while into my recovery where I really realised how this had set me back, and all the things I should have been doing at that age as a 20 year old man. So, it was as time went on that I really realised. And then I had a really hard time for a bit. And then also my seizures started because I developed epilepsy as a result of the scar tissue on my brain. 

I was in a lot of pain as well because of my back and everything. But I remember mentally feeling quite serene, everything was quite calm, and I didn’t have the strains I have now with two children. But I think at the time as well I was… Funnily enough I’m kind of forgetting what we’re talking about. 

EMMA- You had some flashbacks, didn’t you Tom, over the years after your brain injury that kind of gave you a little bit of an insight into what your life was before? 

THOMAS- Yeah. So, for ten years the neurologist and everyone was like maybe if you look for things from before, listen to music or watch TV shows from before, or go to places you went to as a kid or whatever, it might bring something back. And for ten years I did all those things and nothing was coming back. And then it was just before my 30th birthday, I was planning my 30th birthday party, and because I was born in 1983 we were organising this horrible ‘80s themed party.

NIKKI- Good decade.

THOMAS- Yeah. And so I was doing a playlist and this song, Whole of the Moon by the Waterboys came up. 

NIKKI- [Sings lyrics] Honestly, I love that song. 

THOMAS- It’s got quite a tune, hasn’t it? It was dark as well, it was night time when I was doing this with my headphones in, and it was the most magical thing because suddenly I just saw this weird blue. It was a lot of things I wasn’t really sure if I was imagining it because it was so weird. So, it was like a blue floor with this stereo. And then suddenly I just remembered walking along past this bush holding a giant man’s hand. And the next day I was so excited I had to write it all down quickly. And my wife who was there was going, oh my god. And then the next day I had to call my mum and dad and check all this stuff. And a couple of the memories my mum was like, ‘Oh yeah, that was…’ So, realising that it was real was amazing. But it really changed everything for me. For that to happen it was magical. And it inspired me to then write this book. 

NIKKI- Talking about writing the book, which we’re going to come on to in a minute, did you have to learn to read and write again? 

THOMAS- Yes I did. So, it’s weird how the brain works in different ways. Your language side I think – I’ve probably got it the wrong way round now – I think it’s on the left side, and most of my damage was on the right. I think that’s right. I might have it the wrong way round. 

NIKKI- We won’t hold you to it. 

THOMAS- Thanks. So, it’s kind of affected I think it was how the crossover with my memory difficulty, short-term memory as well, kind of crossed over. So, I really struggled to remember anything I’d just written down. So, I couldn’t write really because I couldn’t focus for more than a few seconds. So, it really was a process trying to do that. And then also reading was a nightmare, writing was a nightmare. And then recognising words as well, I was doing what my now four year old is doing, which is trying to blend words together with each sound. So, I wasn’t able to just scan a page like most people my age would have done. 

NIKKI- How did you get into the children’s, because it’s children’s books you write?

THOMAS- When I got the idea for the book, as I said, it was ten years after the accident. I was very determined all that time to get back into reading and to rediscover this magical, the magic of reading and stories, and I love stories. And because of my reading ability at the time I was obviously going up from picture books and then up to trying to read chapter books. But it was really difficult because I couldn’t keep track of anything. I fell in love with fantasy stories and adventure stories, I think because it reflected, it was the easiest way for me to see myself. Which sounds crazy, but when you’ve got memory problems the real world is a mysterious weird place. So, it was kind of the closest I got to seeing myself in these characters because there was no actual representation – I’ll come on to how excited I am to give the world finally a main character, a hero who is living with all the difficulties of a brain injury and epilepsy, which I’m really excited about. 

NIKKI- So, the book coming out is called Jayben and the Golden Torch. 

THOMAS- Yeah. 

NIKKI- Oh yeah. What is it all about? It’s an intriguing title. 

THOMAS- So, it’s about a boy called Jayben who is a boy from this world who wakes up with no memories in another world, which is a sort of fantasy world where there are elves and all kinds of things going on. He wakes up with no memories to discover that he’s the only person who can save the world from an evil villain, called Null, who is making everybody forget, funnily enough. So, he’s wiping people’s minds. And Jayben he has this power but it’s locked up in his memories that he can’t access. And he has to go all over trying to find the thing that’s going to jog his memories for him to do this great thing. And it’s the first in a series of adventure books for ages nine and up.

EMMA- And you talked about how you learnt to read, but what about the writing part?

THOMAS- Depending on the day, and it has got better as I’ve learnt what’s the best time of day. Because of my brain fog as well I can’t do very long. But even when my brain is doing its job I have to work quite differently. I have loads of notes everywhere, and I have to kind of keep everything just so otherwise it gets confusing. But a lot of the time I will have just written something and I’ve lost what I was doing. So, it’s a struggle. The editing process has also been a massive undertaking, which has been amazing and really pushing myself to kind of keep track of all these things. It’s been years. I mean, I got the idea straight after those memories came back, which was the end of 2013. I didn’t start attempting to write until 2014 when my wife was like, Sophie was like, ‘Yeah, you should do this’. And it was really therapeutic as well because I was kind of recycling all these very difficult memories into this amazing exciting story that I was enjoying, so that was amazing. But I was so determined to do it, not just for myself because I knew that I used to love writing and this was something I could do, but also for representing brain injury and epilepsy. Because I was like, wow this is actually a hero who…

NIKKI- Your lead character. 

THOMAS- …who has seizures on his journey and somehow manages, especially for children because there are so many kids out there who can’t see themselves yet in a story. So, I’m really excited about that. So, that kept me going. 

EMMA- What’s next for Jayben and the Golden Torch? You’ve got another book coming. This one’s just out. What’s next? 

THOMAS- The next one is out a year from now. This is important to say. So, Jayben and the Golden Torch, the first book in the series, is out on 2nd February. And then the next book in the series will come out the following year, and then the one after that will come the following year, so there will be one every year. 

NIKKI- So, you’ve got deadlines. 

THOMAS- Yes. As I say, I’ve really worked out how I work best. And I was really amazed at what I managed to do last year with all the edits that we did. Honestly, I still can’t believe that this is happening at this level, to be with Hachette, which is like one of the big five publishers. And to have Jayben on the front cover at the booksellers the other day is amazing. 

NIKKI- Honestly, you should be so proud of yourself, because that is such a huge deal anyway. And with the extra stuff that you’ve had to handle in your life you should just be phenomenally proud.

THOMAS- Thank you. I’ve had so many lovely messages from other fellow survivors of brain injury and epilepsy. And this does mean a lot for us because we’re just not there in these spaces. I got quite emotional when I went in for our big PR and marketing meeting. We almost had to stop for ten minutes because I was crying. 

EMMA- Oh Tom.

THOMAS- Because they blindsided me with this amazing review from a child who had read it and said it was his favourite book. I was gone. Because I never imagined that A, I could do this, but also the added thing of the actual character himself, Jayben, having, I don’t shy away from his condition. So, even though he is expected to be a hero like any other, he has – it’s not really a spoiler – he has a few seizures and one of them is quite a big one. And he has to rest for hours and hours and hours, and there’s nothing he can do about it. And his friends have to help him. And the adventure has to stop. And then he can get on with it. And he can still be the hero. 

NIKKI- That’s a great message. 

THOMAS- And to hear a child say that that’s their favourite book is everything. 

EMMA- What did the child say?

THOMAS- Well, it was his mum who had emailed the PR person saying that he’d said on the way to school that I think it was his favourite chapter book ever, or something like that. I couldn’t be more proud of what it represents and showing these kids. But also not just children that are living with epilepsy and brain injury, as important as it is for them to see themselves in this book, I also think it’s the message of hope and courage speaks to all children. And I want all kids to know that whatever their story you can be the hero. 

NIKKI- Yeah. And the magnificent Jayben and the Golden Torch is out now. 

Thank you so much for listening. As always you can get in touch with us, the usual way, send us a message on WhatsApp. Go Laurence:

LAURENCE- 0330 123 9480.

NIKKI- And please could you start your message with the word Access. You can also leave a voice note; we love a voice note. And you can follow us on Twitter @91Èȱ¬AccessAll is our Twitter handle. 

EMMA- And don’t forget you can email us accessall@bbc.co.uk. Alternative formats are welcome. Still haven’t had many of those, so do challenge us, why don’t you. Again, you can do braille, moon, ASL, ISL, BSL, semaphore, Morse code, telepathy, carrier pigeon; challenge us. 

NIKKI- What is moon? 

EMMA- Oh god, I could be here all day. It’s a form of tactile writing that’s made up of bigger circles than dots, and looks a bit more like print than braille. And it used to be used a lot for people who’ve lost their sight who might not want to learn braille. I’m not sure how much it’s used now. 

NIKKI- Holy moly. 

EMMA- Yeah, you see, you learn something new every day. Tell us another alternative format that we’ve not come up with. Giant print, that’s another one. 

NIKKI- Giant print, large print, yeah. 

EMMA- Yeah, do it. 

NIKKI- Thanks so much for listening. 

EMMA- Bye. 

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