S2 Ep3 Microtia UK & Children's book MI9: The Beginning by Adam Rood

This week we are joined by Tina Rycroft whose son, Charlie,  has Microtia meaning he is deaf in one ear as it is underdeveloped.  She talks about Charlie's attitude and confidence amongst his peers and how his differs from the medical model of disability.

Tina works for the charity Microtia UK, heading up the fundraising and communication initiatives.  She had the great idea of creating a children's book where a character has Microtia.  This is where our next guest comes in - Adam Rood took up the challenge to write this book and in this podcast he gives us a glimpse of what it is about and how schools can enter a competition to win a personal reading by him. 

The book echoes our own values here at Enhance the UK - creating positive awareness about diversity and inclusion.

We hope you enjoy this episode!

Transcript

Audio recording: 0:09

Welcome to Enhance the UK's Undressing Disability podcast, where we strip back all things taboo on sex and disability.

Jennie Williams: 0:23

And today, we are talking to Tina Rycroft, who is a Mum to four boys. And she heads up the fundraising and communication initiatives for the leading British charity Microtia UK. Tina's second eldest son who is now 10, was born with the condition. So I'm going to pass this over to you, Tina, could you tell us about you about about your son and how you got to this point?

Tina Rycroft: 0:51

So yeah, my son, Charlie, he's 10 years old. And back in 2011, when he was born, it was all a bit of a shock. We didn't know what Microtia was. We didn't know he was going to be born with anything like that. To us, you know, it was a normal, healthy baby. And he was, he came out fine. But his ear was obviously under underdeveloped. And it was just a bit of a shock, really, and a lot to take in, as a young Mum to two boys at the time that we had so many appointments come up and different doctors, and I just found it very overwhelming. Eventually, I found the charity, when they were set up in I think it was about 2013. And the charity trustees put the charity together, and I found them and that was a massive support for me. Because I'd not met anybody with Microtia before, I didn't even know what it was. And so yeah, I've gone on to have four boys now. They keep me busy. Charlie's lovely. He's just funny. He loves doing everything, he gets involved with the charity, you know, he'll stand up in front of a crowd of 200 and speak about what microtia is like for him, and what it's like to have a hearing aid and what the surgery was like to have the implant put in. So he's amazing. He's really an advocate for the charity. And I hope he continues. He's told me that one day he'll get a job, but he's gonna keep the charity in mind. He said, he'll never forget us. And he'll always help me which I'm really proud of him, you know. And he's done lots of things on the TV, he's been on the news, he's done blogs, he's been in magazines, he's done so much I need to make him a CV already, bless him. So I got involved with the charity in 2018, after Charlie and I did some fundraising, a job opportunity came up, and it was the first employee of the charity because the trustees are not paid. You know, they're volunteers. And so I thought, why not? You know, obviously, it's an interest of mine, I'm passionate, and I've not looked back, since it's just an amazing job to help other people.

Jennie Williams: 3:15

And so can you tell us what does Charlie say about it? Is it one of his ears? Or is it both?

Tina Rycroft: 3:23

Yes. So he's left sided microtia. So it's just the left side that's affected, and his right side's just typical. And he's very happy, he's been offered reconstruction, to change it. And he doesn't want to, for now he's happy to be him. And like our slogan, 'proud to be me', that's him. He's very proud of himself. He doesn't see why needs to change for anybody. And if he did, he knows it'd just be for him in the future, potentially. But yeah, he's just really happy to share awareness and let people know what microtia is. He obviously gets the odd friends say, 'What happened to your ear?', and he'll say, it's Microtia, Google it! He's very blase about it. But yeah, it's just very positive for now. And hopefully, that will continue into secondary school, because that's going to be the next big change for him.

Jennie Williams: 4:20

And does he have any hearing out of that ear?

Tina Rycroft: 4:22

It's very small, like a small amount. So he does struggle; you'll find that if I say something, and if he doesn't hear me, he'll turn to the right. So obviously to use his other ear, so he can hear me better. So I do notice obviously, he's got his hearing aids. But at the minute he is going through a phase of 'I don't want to wear it at school anymore'. He's getting older and I think he's getting a little bit more self conscious about what he looks like. So he's been taking it off, which is not great because I know it helps him a lot in noisy situations.

Jennie Williams: 4:56

And how are the practicalities - how does the hearing aid fit?

Tina Rycroft: 5:00

So he's got like a magnet that's been screwed to his skull. And he had that done when he was six. He was really passionate about having that because he had the headband. So the hearing aids sort of attached to the headband. But it used to push his hair up and look like a girly headband, he said, so he went for the magnet that was just popped in, screwed to the skull, stitched back up, it healed within 11 days, it was a really quick process. And then about a month later, the reprogrammed his hearing aid and now it just attaches like a magnet so he can put keys and spoons on his head as party tricks as well now, so he likes to show off to his friends and family, and say, 'Look at me, I'm doing a magic trick'.

Jennie Williams: 5:44

So it's a bit more like a cochlear implant then?

Tina Rycroft: 5:47

yes, that's it.

Jennie Williams: 5:49

Okay. I mean, that takes some confidence, because I started wearing hearing aids when I was eight. And back in the day, there were massive hearing aids that fell out very, very easily. And I hated them. I didn't wear my hearing aids. And I definitely didn't have that confidence when I was a child, I didn't have anyone to turn to apart from my dad who is deaf, and my dad was 1000 years old, you know, and not cool. So, I mean, that's a pretty big deal for a 10 year old boy to go yes, this is me, I'm confident, and that's kudos to you as a parent that really is like, saying, right, let's own this, let's speak about it. And let's be proud of it. And let's face it, lots of people try and change conditions, and rectify, and let's go back to the the medical model - how many operations can you have and to be able to say, you don't need to do that. That's a really big deal.

Tina Rycroft: 6:47

Yeah he still gets that now, you know, at his appointments, we have one doctor that he sees, and he still says, you can know you can get reconstruction, he keeps trying to push for him. And I've tried to sort of say, Oh, he's happy how he is and he says 'yes, but when he's older, and he'll get bullied', and I'm like, Why are you just assuming, because he has a smaller ear that he will get bullied? To be fair, it's not that noticeable really. A lot of people don't even really notice. So it's just sad that there are people still trying to change and rectify what's'wrong' in inverted commas. You know, when there's nothing wrong with him, he's fine as he is. And if he's proud, why not let him be who he is, you know?

Jennie Williams: 7:25

Absolutely. And I think we're using this word normal as well. I know, when I take my children regularly for hearing tests, I don't know whether they've got the same condition as I have, that runs through my family. But I know that it's always spoken about,'at the moment, it's normal, but if you're worried', and they can't really seem to get their heads around that I'm not worried, if they do have a hearing loss, well they've got a hearing loss. You know, we'll cope with that. It's fine. It's not a problem. I've got amazing pink hearing aids, that I get complimented on, it's okay. And it's trying to change that mindset isn't it of healthcare professionals, speaking and saying, it's up to you, it's personal choice. But I think Charlie's gonna be a trailblazer by the sounds of it. And like I said, that's kudos to you as a parent, it's a really big deal. So coming then to current day in this book, because you guys have created a book and we've also got Adam, on this podcast. So sorry. Hello, Adam. And so the first question and I know, Damian's gonna ask some questions as well. But going straight in, how did you get involved in creating and writing this book? Billy is one of the main characters, is that right?

Adam Rood: 8:43

That's right. Yes. It's, Billy is the key character in the book who happens to have microtia. How did I get involved? I saw a post on social media that a very good friend of mine shared, which was saying that a charity called Microtia, were looking for an author for a book. And I turned around to my partner, Rosie and said, Oh, look at this. I'd always wanted to write a children's book. I actually trained as an actor, graduated in 2008, and had written several kinds of plays and things. But stuff had been performed above pubs and things, but nothing more than that. And I've always wanted to write a book, but I also know from other people who've tried and failed, how difficult it is to do it and to get noticed, so I thought, Oh, what an amazing opportunity. So I just sent Tina an email, because Tina's email address was on the social media post. And it was one of those emails that you send in, and sort of expect never to get a response to, because in the back of their head, they're sort of hoping for a David Walliams or a Roald Dahl to come along and go, yes, we'll do it, this is amazing. But Tina replied, within about two days, and I instantly fell in love with their vision as a charity, which was to create a story that wasn't about microtia, but to create a story about a protagonist, who happens to have microtia, and the world continues to revolve around them as it does for all of us. We go about our daily lives and he just happens to have this condition with whatever else the story is. Those were the only parameters. So it was like an absolute dream, from my perspective, because effectively it was, 'here's a blank canvas, and the only rule is that one of the characters in your book has to have microtia'. And I said, Okay, that's great. And the request was to send a sample chapter. And I said to Rosie, Oh, well, I better write two sample chapters, because, you know, I've never written a book before. And it's all a bit daunting. So I got carried away and for my own self importance I wrote five chapters! Because I got so excited about the process that was going on. So I fired off these five chapters, and then Tina and Hannah got back to me very quickly, within a week or two and said, Yeah, we'd like you to write the book. And so I'm afraid social media is responsible for me having any involvement whatsoever in the book, but I'm so pleased, I saw the post that my friend had shared and that I responded.

Damian Weatherald: 11:47

Yeah, it's good how social media can open up those opportunities. That's the good thing about it. Want to give us a little taster, a little bit of what the story's about? so our listeners might want to buy it.

Adam Rood: 12:01

Definitely. So my daughter, Poppy, who is six was born with a cleft lip and palate. So I had experience - she had two life changing operations in the first year of her life. And Rosie, my partner ran the marathon with them. And so we've had quite close associations with those charities and their charity, the Cleft Lip and Palate Association is a very similar size, to Microtia UK. And, massively underfunded as all the small charities are in this country. And in desperate need of getting the word out there. And like when Poppy was diagnosed with having a cleft lip and palate, I'd never heard of a cleft lip and palate before really, despite it being really common; one in 700 Children are born with it in the UK. So it's not something I'd come across and microtia, although I had a friend at school, who I now know, happened to have microtia, I never asked about it, and I didn't know anything about it and I didn't have that awareness. So I was kind of researching what it was. And what I wanted to do was to create a story that kind of celebrated the fact that every young person has a superpower, whether it is that they're good at a certain thing, or they're a very personable person and really easy to like and to love, or whether it is that they're incredibly helpful. What is the kind of superpower that is hidden inside everybody? And I wanted to make the stakes as big as possible. So I'm thinking what would make this story kind of really compelling? I thought, well, it would probably be if it involved the government or something on a kind of huge scale like that. So I came up with this idea that all of the students in year six across the UK, almost overnight had a test put onto them by the government. The government just sent an email out to every school and said, right, forget SATs, every student tomorrow has to take this test. And it's to ascertain, to understand, which children in this country have the biggest superpower, so they sent around these secret bottles of water with a special chemical in them. Highly illegal, obviously! There we go, not in our book it isn't! So they sent these bottles of water so every child got a bottle of water, and they had to answer these questions. And the last question on the test is, if you had one superpower, what what would it be? And from the millions of people who would have taken the test across the UK, or certainly hundreds of 1000s, they cherry picked these young people with these superpowers. And so Billy, one of the characters who is in the book, who is a very unassuming young chap, he's not brazen, he doesn't have the most vibrant personality, he is just what you would expect - a polite, courteous kind, Year Six young lad to be like, rather than him being a particularly zany, think outside the box type of person. And so he is called to 10 Downing Street very late one night, and he beats the other characters there. And the government say, right, this is what we're going to do, we're going to create a special force from young people, a bit like MI5, but we're going to call it MI9. And there are some jobs in this world that adults cannot do. And so we've decided, as a government that children can do those jobs that we as adults cannot do. And so there's a private school in West Sussex, who we believe have a secret formula to creating biofuel and biodegradable packaging, which has obviously been quite big in the news in the last couple of years as we become, or we attempt to become slightly more sustainable as a planet. And if they've got this secret recipe, and they go nuclear with it across the world, then they're going to earn all the money and the government aren't going to get any and this tiny private school are going to become billionaires. And we don't want that. We want the government to infiltrate this and get involved and stand in the way of what's going on. So what we're going to do is we're going to send all of you young people, posing as students, into this school, and we need you to do this; we need you to find this recipe, we need you to go completely undercover. And that's what you have to do. Do you accept the challenge? And all of the young people around the table except for one, happen to have disabilities. So Poppy, which is also my daughter's name, was born with a cleft lip and palate, and her superpower is that she can speak 14 different languages. Billy happens to have Microtia, and after he's drunk the secret liquid that the government sent out when he did the test, he can hear people's thoughts, so he can look at somebody and hear what they're thinking. And of course, that's a great superpower to have. Max, another one of the characters was born with a condition called Wagga syndrome, which my nephew was born with, which means that he happened to have been born with a missing limb and has had again several life changing operations under the care of Great Ormond Street. So he features in the book as well. And he has superior strength in his left arm as a result of drinking this, where he can kind of move vehicles and push things out of the way. So they go to this private school.. and I feel like I've waffled on for 10 minutes. And if I tell you any more, you won't bother reading the book so

Jennie Williams: 18:22

I don't know if I'd like to be in your brain. It's exciting and scary! No, I'm just thinking as you were speaking I would love to have read this book as a kid. I'm the kind of person that will sit with my children and pretend I don't really want to watch a Disney movie. But get way more into it than them. So as a grown up, what are grownups going to take from if they're kind of half reading it to their child, but really reading it for themselves?

Adam Rood: 18:58

Yeah, definitely. I think we all do that, don't we. I continually choose books that I want to read my daughter at night. I love Charlie and the Chocolate Factory or I love Esio Trot so I'm just going to read that one. Because that kind of makes sense to me. I think that, you know, you can look at it two ways; you can look at it kind of from an educational standpoint, which I acknowledge is quite boring. And you can say, Okay, well, maybe I want to celebrate diversity with my child and I want to celebrate the fact that all of our differences are not hindrances. They're just things. It just is. People sometimes ask Poppy about the scar on on her lip and you know, I'm sure Tina's son has had the same experience. People do ask questions, people are naturally inquisitive. Although I have found that although there are still so many issues that we need to crack down on in this in this country with, you know, racism, homophobia, disability rights, so much needs to be covered. I don't even know where we start with them. But I feel like it's kind of a good platform, a good plateau to start from where you say, Look, this is me. We're celebrating who we are. And just because you're a little bit different, or your skin's a different colour, or you happen to have microtia, or you happen to have been born with a cleft lip and palate, it just makes no difference to who you are, you're still a superhero. And that's what I think that the educational message is inside the book. And from an enjoyment point of view, it's just a complicated, weavy story that fits into as fewer words I could possibly do. Tina was very good. And Hannah was very good, they didn't make me cut much. There was a few tiny things that we messed around with and change the order of but ultimately, the book that I wrote is the book that you'll read, so I was so grateful for that freedom to be able to just write, and to get all of this down. And what was so weird, the weirdest thing about it, because obviously I've never written a book before. So alongside my self indulgent five chapters that I sent to Tina, right at the beginning, they also requested a story arc going from the beginning to the end of the story, what's going to happen to these characters. And of course, you write things down in a sentence that you're just thinking about for a day or two or making up on the spot like, he crawls up, or Billy crawls up the air conditioning unit, and watches the staff room below with the teachers having their secret meeting about the discovery of biofuel and the secret recipe. And that's a single sentence on a story arc. And when I got to that bit in the book, like climbing up an air conditioning unit - I mean, I've never done it, I've got to say, but I can only imagine that it's sort of how I describe it in the book, and it takes pages. And you end up going, Oh, hope this isn't getting boring for people to read. You're just trying to describe the the innards of scraping one's body up an air conditioning unit and being able to circumnavigate that and how to listen secretly to a group of people actually writing the words down in the chapter and saying, you know, it ends up being a chapter in itself, this tiny little line in a five page story arc. So Tina said to me, Oh, how long do you think the books gonna be? And I must confess, and she doesn't know this, I googled the kind of average length for the children's book and sort of went oh David Walliams, and Roald Dahl was sort of 20, 25000 to 35,000 words. So that's what I wrote down and it was ended up at about 45,000 after the final edit, because I just got so engrossed in the story. And I realised that to give the kind of level of detail that I wanted, and the emotion that I wanted to bring to all these characters lives, because the experience was the other thing for me, the experience that they have together and the unity that they formed together, and the friendship and bond that they develop, was kind of the most important thing, which was beautiful, because it overshadowed even all of the superpowers and the disabilities that they face their entire life. And it just became a story about these people becoming fantastic friends. And the end of the book kind of paves the way for the fact that they're going to get called back to the Prime Minister's Office to go on another mission.

Damian Weatherald: 24:10

I love the idea of introducing disabled characters in a children's book, especially for, a child who reads it who may never add an interaction with another disabled person at all, I think I think it's a great way of doing it. So have you got plans to bring in other disabilities into another book if you're going to write one?

Adam Rood: 24:32

Yes. And I think what would be the most interesting thing, and it's something that Tina and I haven't spoken about yet, but one of the kind of ideas that I've had in my head is when children who happen to have disabilities meet adults who happen to have disabilities, and how when those worlds collide, what happens there. But our key pool of characters, you know, we've got Max who has happens to have Wagga syndrome, we have Billy who happens to have microtia we have Poppy, who has a cleft lip and palate. Oh, and Freddie who was born colorblind. So yes, is the answer, because it becomes such a great topic to talk about, to instigate debate, to open that line of communication about it. And, I don't have any disabilities. And the experience that I have is my nephew and my daughter. So it's been eye opening for me as well, to do some research into what microtia was right at the beginning, and how the charity help other people. And how the Cleft Lip and Palate Association helped us when we were new parents or even prenatally when before Poppy had even been born, to the point where we had that support in place. And that was only there because as Tina said right at the beginning, that it's all mostly volunteers. And that's what we experienced, people who were giving up their time to educate other people about what's coming next. And I just feel like we need more than that. And I know that schools are pushed with English, maths and science and grades and getting people the qualifications they need. But if we all spent more time as a unity, as a kind of UK movement, educating people about that, that we'd just be far better informed. So there we go. That's what the book hopes to achieve as well is to kind of open up that line of communication.

Jennie Williams: 26:58

I've got three things to say about before we go over to Tina, because we need to hear a little bit more about Project 100, but I think the first one is, this needs to be made into a film. And it would be amazing if it's made into a film and all those characters had the actual disabilities that you were talking about. So we need more representation, don't we of disabled people, particularly young disabled people on TV, so let us help champion that for you. I love the fact that you say 'happens to have' , we always say that, you know, they happened to have this disability, or we happen to have that. All the characters that you see on TV, most of the time, the disability is the main focus. Or they're a baddie.

Adam Rood: 27:46

A very good friend of mine runs a very successful social media page, about her child, Oscar, who happens to have Downs syndrome. And that's where I learned that terminology from, and she's written a book about parenting a child that happens to have Downs syndrome. And I picked her up on it almost immediately, because I realised that she was using terminology that she picked up on and was the most kind of appropriate language to use. And I said, Why do you say he 'happens to have' and her page is actually called Don't Be Sorry. And that's because when she received the diagnosis that Oscar had Downs syndrome, she had had the test, like many mothers have done and it was like a one in 300 chance and the the midwife said to her, I'm sorry to say your son has Downs Syndrome and her stance now is, What are you sorry for? You know, why are you sorry? Don't be sorry. And, that, and'happened to have' that disability is, I think, really, really important.

Jennie Williams: 28:58

It is absolutely, and we use it all the time. And my third point was, can you come around at nighttime and do the made up story for my children, because I think that they would get to sleep a lot quicker, they'll be more excited and also a lot quicker with you telling it then my made up story at the end of the night and it's much more exciting. But we're conscious of time. And Tina, we really want to hear about Project 100 and the latest initiative. So can you can you tell us a little bit about that?

Tina Rycroft: 29:31

Yes. So we brought in the idea of giving away 100 books to 100 schools. And we would love for more people to get in touch if they're listening. So if you're a school or a teacher, you're more than welcome to drop us an email to the charity and request a free book of MI9. We're just trying to get as many books as we can, across the UK, sent out to help promote positive awareness, diversity, inclusion and we hope that the schools and the teachers will share it with their students, and maybe even make a session about it. And the great thing is that if they do request a book that they can be into our competition for Adam to do a reading with their school, so that's amazing. I'm sure Adam would be great. I can't wait to see that.

Jennie Williams: 30:23

Adam, I'm going to go along to that! Can I get a ticket for wherever you go.

Adam Rood: 30:31

Yeah, of course. What's so bizarre about this, is that this is the first time Tina and I have seen each other talking live, in the entire process, because of course, Coronavirus. We've not been able to meet. So this is the first time I've ever seen Tina's face with her lips moving.

Jennie Williams: 30:53

Really? You guys are behind the time with Zoom, you really are.

Adam Rood: 30:56

That's true.

Tina Rycroft: 30:59

So yeah, we'd love for people to get involved, and then hopefully win for Adam to go and read at their school. And also, then if they do get involved, and leave us a review on Amazon, we'd love them to leave us a review if they can, to help us sort of get out there and promote things more. We're hoping to then hold some sort of competition in the winter, like a colouring competition for the children at school, where they can colour the characters in and we'll pick a winner, and they'll win a prize there as well. So there's no reason for people to not get in touch, it's a free book, and it helps raise lots of awareness of the different conditions and of just being proud to be yourself as well. And for them to have a talking point of what makes you unique. And what makes you special. Whether they've got a condition or not. It doesn't matter does it? So, yeah, we'd love to keep that going. And we still got plenty of books left, so do get in touch.

Damian Weatherald: 31:57

I absolutely love the mantra of being yourself. And I would love to have had a book like this, with a character with my condition when I was at school because it would have just been able to explain it easier to other kids. It's hard to explain to children sometimes that people can be different and I think this is a great way of doing it and bringing that adventure side to it. Especially for young boys. I think more so, I think it's a great way of doing it.

Jennie Williams: 32:24

Yeah, that means Adam, can we have like a unicorn one next. That's what my girls are like, they're so girly I don't know where it comes from. I'm not very girly, they're all unicorns and fairies. It's like a unicorn has vomited over our living room sometimes.

Adam Rood: 32:39

I think I'd add to what Damien said as well, by saying, even more than that is that different isn't bad. That different just is. Different isn't bad, different can be celebrated, but different is just fine. You know, it's that. It's yes, some people are born slightly differently and that's okay. I think even young people get nervous about asking questions, because they're so worried about upsetting either other children or adults. So it's easier to just say nothing and do the kind of stare, and it's not them being rude or unkind. It's just because we need to equip them better, to ask questions and to celebrate difference.

Jennie Williams: 33:26

Absolutely. And that's the complete ethos of everything that we do it Enhance, trying to change that narrative. So Tina, can you just say for all our listeners, again, all your social media handles, your website, etc. so where people can get in touch with you?

Tina Rycroft: 33:41

Yes. So we're on everything I believe. We're on Twitter, Instagram, Facebook, we have a few videos on YouTube as well if people do want to have a look, and we have a website called Microtia UK, if you pop that in, it will come up. And you'll see on the Contact Us our email address, and people are more than welcome to get in touch and request a book for their school.

Jennie Williams: 34:05

Okay, and we will put all of that information up on our all our social media as well. Can I just say I honestly have thoroughly enjoyed this. I'm really excited about reading this myself. And we will be spreading the word and sharing this message. I think it's brilliant. And when you want to do a unicorn and fairies one, Adam, let us know and we'll be happy to promote that as well. But thank you so much for both of you coming on and I'm excited and we will help you as much as we can spread the word on this, it's brilliant.

Tina Rycroft: 34:43

Thank you.

Adam Rood: 34:44

Thank you very much indeed. It's been an absolute pleasure. I've loved it.

Damian Weatherald: 34:48

It's been brilliant to meet you both. And I will be reading this very shortly.

Adam Rood: 34:53

Let me know what you think.

Damian Weatherald: 34:54

I certainly will.

Jennie Williams: 34:56

Thank you so much for listening. If you'd like any more information about the work we do under the Undressing Disability campaign then go on to our website at enhancetheuk.org and click on the Undressing Disability tab.