EMMA- What I want to know is couldn鈥檛 you just go on the Masked Singer?

NIKKI- Well, I mean hook me up ITV. Honestly, that鈥檚 the one job if somebody asked me I wouldn鈥檛 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鈥檇 give yourself away with the wheelchair, wouldn鈥檛 you, or the scooter?

NIKKI- No, I鈥檝e given thought to this, Ems. I鈥檇 be inside a whole kind of mechanical suit which could be, I don鈥檛 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鈥檇 have the time to practice, which I never do. My old PA bought me a karaoke set and I鈥檝e never had time to have a go at it.聽

EMMA- Tell me more about this mechanical suit that you鈥檝e got in mind. Would it have the wheelchair included or鈥�?

NIKKI- Yeah. So, the wheelchair would be inside. It鈥檚 obviously going to be very big so people won鈥檛 be able to guess my height. But we don鈥檛 want to give away the fact that I鈥檓 knee high to a grasshopper because I鈥檓 on a chair. So, I鈥檓 thinking circular. And it鈥檚 got to have enough room so I don鈥檛 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鈥檛 think she鈥檚 disabled. But the taking it off I would be worried about. Because I told my sister this and my sister was like, 鈥榊eah, like you鈥檒l be able to take it off鈥�.

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鈥檚 not going to happen.聽

CLIP- Who鈥檚 behind the mask?

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

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

NIKKI- The disability correspondent of the 大象传媒 is still trying to take her mask off.聽

MUSIC- Theme music.

NIKKI- It鈥檚 another Access All podcast. Thank you so much for joining us. I鈥檓 Nikki Fox and I鈥檓 in London.聽

EMMA- And I鈥檓 Emma Tracey and I鈥檓 in Edinburgh.聽

NIKKI- So, every week we bring you the news, interviews, and we often go a bit too personal, don鈥檛 we, about our own disability.聽

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

NIKKI- We go there.聽

EMMA- Subscribe to us on 大象传媒 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.聽

NIKKI- Yeah.

EMMA- Why wouldn鈥檛 it?聽

NIKKI- Now, I feel guilty about asking this because I鈥檝e got the concentration of a goldfish, but please keep listening, stick with us, don鈥檛 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鈥檚 book that you may have already heard of, it鈥檚 called Jayben and the Golden Torch, which cleverly uses his own experiences of brain injury and epilepsy in a story that鈥檚 set in a world of elves and fantasy. And I鈥檓 sure it鈥檚 going to get made into a movie.聽

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

HOWARD- Hello.

STEVEN- Hello everyone.聽

NIKKI- I鈥檝e got Howard in the studio and Steven online. And today we鈥檙e doing something a bit different, aren鈥檛 we, Em: we are going to be tackling loneliness. And we鈥檙e also going to explore why it鈥檚 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鈥檙e going to get into that.聽

Now, before we start as well, it is a tough old subject, but we鈥檙e going to make sure we talk about solutions. And how are we going to do that, I hear you all ask. Well, I鈥檝e appointed, I don鈥檛 know if she knows yet, Emma Tracey to be our solutions champion. Do you like that, Ems?

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

NIKKI- You鈥檙e my champion.聽

EMMA- Not being sporty or anything. Ah, thank you. Yes, solutions, ideas, I think I don鈥檛 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鈥檛 know if anybody was watching The One Show, it was on earlier this week, you鈥檒l have seen that I went to a gig in London at the Hard Rock Caf茅, and it was set up by the man that is in the studio with me, I adore him, I鈥檓 just going to put it out there, his name is Howard Thorpe. Now, he had loads of famous people knocking around the joint, didn鈥檛 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鈥檝e 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鈥檚 what I do for a living.聽

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.聽

FRANK- Sure.

NIKKI- And one of those being accessibility and just being able to get out and have a good time, isn鈥檛 it?

FRANK- Sure, yeah.聽

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

FRANK- Yeah, I have.

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

FRANK- Again, I feel like it鈥檚 a thing that people finally, I suppose might be the word, starting to pay attention to. But it鈥檚 getting better. The example I always think of is the Tabernacle in Atlanta Georgia. It鈥檚 a 3,000 cap venue in Atlanta which I have been fortunate enough to play in a number of times in my life. They鈥檝e changed it. It鈥檚 a big room, it鈥檚 a bit like Hammersmith Apollo, that sort of vibe, and they鈥檝e moved the disabled area. And in fact I don鈥檛 know where it was before, which says quite a lot as somebody standing on the stage. But now it鈥檚 at the front. It鈥檚 on the barrier, it鈥檚 to one side, but I鈥檇 say it鈥檚 about one third of the front barrier is the disabled section. And as far as I understand this 鈥� and don鈥檛 quote me on this, he said into a microphone 鈥� they can extend it or decrease the size of it depending on how many people need it.聽

NIKKI- Oh, that鈥檚 great.

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

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

FRANK- Right yeah, I can imagine.聽

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

FRANK- I had on my last UK tour a couple of occasions where the show itself wasn鈥檛 sold out completely, but the disabled area was. And then I get a message from somebody saying, I want to come but I can鈥檛. And it鈥檚 like that鈥檚 the whole thing we鈥檙e trying to stop.聽

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.聽

HOWARD- Yeah.

NIKKI- I don鈥檛 know whether that鈥檚 the right word.聽

EMMA- Changing places, isn鈥檛 it?

NIKKI- Changing places, that鈥檚 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鈥檚 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鈥檛 you?聽

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鈥檛 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鈥檛 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, 鈥楬oward, why did you go away?鈥� The room went completely quiet and then I burst into tears saying, 鈥楤ecause I am so lonely鈥�. Then I got a job.聽

NIKKI- You loved that job, didn鈥檛 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.聽

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.聽

HOWARD- Yeah. So, I said to myself, I鈥檝e 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鈥檝e said to me on occasions you still feel chronically lonely.

HOWARD- Yeah, because what some people don鈥檛 understand, say I go to two, maybe three gigs a week, that sounds incredible.聽

NIKKI- Yeah.

HOWARD- But that means for four nights I鈥檓 home by myself.聽

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

HOWARD- I鈥檝e never been in a proper relationship. I mean, I鈥檓 no angel, but I鈥檝e 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鈥檝e got the most amazing personality. You鈥檙e hilarious. A very dapper dresser.聽

HOWARD- Thanks.聽

NIKKI- No, you are. Why do you think you鈥檝e not had a partner? Not that it鈥檚 for everyone; it鈥檚 not for everyone.聽

HOWARD- Well, I tried online dating for two or three years. That didn鈥檛 quite work out. If I knew the answer to that question then I would like to think I could turn it round.聽

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鈥檚 really helpful that you鈥檝e been public about that as well because I think people will feel actually less lonely and alone for hearing that.聽

NIKKI- Yeah. Do you think also as well, Howard, when you鈥檙e disabled 鈥� this is not at all scientific; this is just my own personal thoughts 鈥� but I know that my sister and I are both disabled, have a really close bond with our parents, and that鈥檚 just luck and all sorts of things. They鈥檙e also incredibly lovely people. But also they have looked after us in other ways that maybe somebody who wasn鈥檛 disabled would have experienced. Do you think that鈥檚 what makes a bond closer and that鈥檚 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?聽

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鈥檙e blind, you鈥檝e got hearing loss and you鈥檝e recently been diagnosed autistic as well.聽

STEVEN- Yeah, that鈥檚 correct. I think that鈥檚 a really good question. And actually until Nikki asked it just now it鈥檚 something that I hadn鈥檛 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.聽

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鈥檛 asked to things, but then when I was asked to things I didn鈥檛 want to go because I knew how difficult they would be. Certainly my experience was that it鈥檚 actually possible to be surrounded by people but to still actually feel lonely.聽

NIKKI- You鈥檙e listening to Access All on 大象传媒 Sounds. Today we鈥檙e talking about how disabled people experience loneliness differently, and we鈥檙e 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鈥檚 celebrity status, but we鈥檒l 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?聽

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

NIKKI- You鈥檙e doing some more work on it at the moment. But the most recent figures you鈥檝e 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鈥檛 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鈥檛 you Steven, because you are what could be described as a buddy. Not to be confused with gig buddies, that鈥檚 entirely different.聽

EMMA- And I will talk about them very soon.聽

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

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鈥檝e had the double whammies of the pandemic and also the cost of living crisis, which has also put pressure on people鈥檚 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鈥檚 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鈥檓 a volunteer on the buddying programme, and I work once a week with a young man who鈥檚 got a range of disabilities. I have a buddy as well, and again it鈥檚 very similar, we meet for an hour each week. Mainly we talk about sports, I鈥檝e got to be honest.聽

NIKKI- I love that.聽

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鈥檚 really successful. It鈥檚 all over the UK. They鈥檝e started it in Australia. There鈥檚 a new one starting in New Zealand. They鈥檙e a part of someone鈥檚 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鈥檇 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鈥檛 it, like figuring out what to do, especially when you don鈥檛 know whether something is inclusive or aimed at you or not. And that鈥檚 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鈥檚 stopping you from doing the thing or what's stopping you from picking up the phone. So, actually talk about it.聽

NIKKI- That鈥檚 what you鈥檝e done as well, isn鈥檛 it, Howard, you鈥檝e been quite open. I didn鈥檛 expect you to be quite so open actually.聽

HOWARD- Nor did I. Up until a couple of years ago I didn鈥檛 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.聽

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

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

NIKKI- The Smash Hits.

HOWARD- Yeah, there was this new act called Marky Mark鈥檚 Funky Bunch.聽

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鈥檚 it. And we spent the day together backstage with Kylie.聽

NIKKI- Kylie and who else?

HOWARD- Oh, all the bands.聽

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.聽

EMMA- Ministry of Sound, right.

HOWARD- I go upstairs and Mark goes, 鈥楬oward, let me get you a beer鈥�. I can鈥檛 drink, I鈥檓 driving. Stay with me. As we鈥檙e leaving the party Vanessa Feltz comes up to me...

NIKKI- I wasn鈥檛 expecting that, to be honest with you, I wasn鈥檛 expecting Vanessa Feltz.

HOWARD- And she went, 鈥楥an you get me to meet Mark Wahlberg?鈥� I said, no.聽

NIKKI- Howard!

HOWARD- What?

NIKKI- Vanessa Feltz is a good woman.聽

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

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

HOWARD- I鈥檝e got no idea what you鈥檙e talking about.聽

CLIP- That鈥檚 wrong, Mark. Don鈥檛 touch the man there.聽

NIKKI- That was you. That鈥檚 true.聽

HOWARD- I鈥檝e got no idea what you鈥檙e talking about.聽

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

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鈥檚 listening to this podcast now pause it for鈥�

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

EMMA- Yeah, and pause it definitely, don鈥檛 turn it off, pause it.聽

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

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

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

NIKKI- Yes, than you, it鈥檚 been amazing.聽

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

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

HOWARD- Thank you.聽

NIKKI- It鈥檚 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鈥檚 out in Australia and New Zealand later in the month. But it鈥檚 not all been plain sailing. Thomas told his story to our team at an event we put on in Edinburgh a few years ago.聽

THOMAS- My name鈥檚 Thomas and I鈥檓 a writer, which is something I never thought I鈥檇 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鈥檚 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鈥檇 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.聽

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鈥檚 taken a break from writing his second book to join us in the studio. It鈥檚 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鈥檛 know?聽

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鈥檚 kind of weird when people ask me about it now because I don鈥檛 remember feeling, because I didn鈥檛 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鈥檛 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鈥檛 recognise them again. So, they weren鈥檛 quite sure, all these things, it took a while to iron out.聽

It was weird because for a while I was just kind of wonderstruck by everything. And the neurologist said that it鈥檚 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鈥檛 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.聽

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鈥檛 have the strains I have now with two children. But I think at the time as well I was鈥� Funnily enough I鈥檓 kind of forgetting what we鈥檙e talking about.聽

EMMA- You had some flashbacks, didn鈥檛 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?聽

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 鈥�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.聽

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

THOMAS- It鈥檚 got quite a tune, hasn鈥檛 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鈥檛 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鈥檚 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, 鈥極h yeah, that was鈥︹€� 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.聽

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

THOMAS- Yes I did. So, it鈥檚 weird how the brain works in different ways. Your language side I think 鈥� I鈥檝e probably got it the wrong way round now 鈥� I think it鈥檚 on the left side, and most of my damage was on the right. I think that鈥檚 right. I might have it the wrong way round.聽

NIKKI- We won鈥檛 hold you to it.聽

THOMAS- Thanks. So, it鈥檚 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鈥檇 just written down. So, I couldn鈥檛 write really because I couldn鈥檛 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鈥檛 able to just scan a page like most people my age would have done.聽

NIKKI- How did you get into the children鈥檚, because it鈥檚 children鈥檚 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鈥檛 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鈥檝e 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 鈥� I鈥檒l 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鈥檓 really excited about.聽

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

THOMAS- Yeah.聽

NIKKI- Oh yeah. What is it all about? It鈥檚 an intriguing title.聽

THOMAS- So, it鈥檚 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鈥檚 the only person who can save the world from an evil villain, called Null, who is making everybody forget, funnily enough. So, he鈥檚 wiping people鈥檚 minds. And Jayben he has this power but it鈥檚 locked up in his memories that he can鈥檛 access. And he has to go all over trying to find the thing that鈥檚 going to jog his memories for him to do this great thing. And it鈥檚 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鈥檝e learnt what鈥檚 the best time of day. Because of my brain fog as well I can鈥檛 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鈥檝e lost what I was doing. So, it鈥檚 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鈥檚 been years. I mean, I got the idea straight after those memories came back, which was the end of 2013. I didn鈥檛 start attempting to write until 2014 when my wife was like, Sophie was like, 鈥榊eah, you should do this鈥�. 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鈥�

NIKKI- Your lead character.聽

THOMAS- 鈥ho has seizures on his journey and somehow manages, especially for children because there are so many kids out there who can鈥檛 see themselves yet in a story. So, I鈥檓 really excited about that. So, that kept me going.聽

EMMA- What鈥檚 next for Jayben and the Golden Torch? You鈥檝e got another book coming. This one鈥檚 just out. What鈥檚 next?聽

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.聽

NIKKI- So, you鈥檝e got deadlines.聽

THOMAS- Yes. As I say, I鈥檝e 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鈥檛 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.聽

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

THOMAS- Thank you. I鈥檝e had so many lovely messages from other fellow survivors of brain injury and epilepsy. And this does mean a lot for us because we鈥檙e 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.聽

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鈥檛 shy away from his condition. So, even though he is expected to be a hero like any other, he has 鈥� it鈥檚 not really a spoiler 鈥� 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鈥檚 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.聽

NIKKI- That鈥檚 a great message.聽

THOMAS- And to hear a child say that that鈥檚 their favourite book is everything.聽

EMMA- What did the child say?

THOMAS- Well, it was his mum who had emailed the PR person saying that he鈥檇 said on the way to school that I think it was his favourite chapter book ever, or something like that. I couldn鈥檛 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鈥檚 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.聽

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

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 @大象传媒AccessAll is our Twitter handle.聽

EMMA- And don鈥檛 forget you can email us accessall@bbc.co.uk. Alternative formats are welcome. Still haven鈥檛 had many of those, so do challenge us, why don鈥檛 you. Again, you can do braille, moon, ASL, ISL, BSL, semaphore, Morse code, telepathy, carrier pigeon; challenge us.聽

NIKKI- What is moon?聽

EMMA- Oh god, I could be here all day. It鈥檚 a form of tactile writing that鈥檚 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鈥檝e lost their sight who might not want to learn braille. I鈥檓 not sure how much it鈥檚 used now.聽

NIKKI- Holy moly.聽

EMMA- Yeah, you see, you learn something new every day. Tell us another alternative format that we鈥檝e not come up with. Giant print, that鈥檚 another one.聽

NIKKI- Giant print, large print, yeah.聽

EMMA- Yeah, do it.聽

NIKKI- Thanks so much for listening.聽

EMMA- Bye.聽

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