Transcript: “We made conversation while my daughter licked the pavement”

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This is a full transcript of We made conversation while my daughter licked the pavement with writer Shaun Pye as first broadcast on 5 November. Presented by Daniel Gordon

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DANIEL - This is BBC Ouch. I'm Daniel Gordon, an unfamiliar voice to a lot of you I'm sure. I'm one of the Ouch production team. And I'm joined in the studio by the writer and comedian Shaun Pye. Am I describing you correctly?

SHAUN - Let's go for writer first [laughs] then we'll decide.

DANIEL - Writer okay. And writer of what? Because I can read out your Wikipedia entry if you like, but you can tell me the stuff you want to be remembered for rather than what Wikipedia says.

SHAUN- I've written for Have I Got News For You in the past. I wrote a film about snooker a few years ago called the Rat Pack, but I've currently, the thing I've recently written is There She Goes on BBC 4.

DANIEL- Right, which is what you're here to talk about.

SHAUN- Which is what I'm here to talk about.

DANIEL- Which we'll get onto in just a minute. But let's also introduce my colleague, William Kremer.

WILLIAM - Hello.

DANIEL- Who is a fellow journalist. Hello William.

WILLIAM - Hello Daniel.

DANIEL- Unusually for Ouch we are three non-disabled people in the studio. And the reason for that is that both of you have written in different ways about your children who have learning difficulties. And Shaun, as you were mentioning before, we've just got to the end of your BBC 4 series about your daughter, which was a comedy, which was a slightly unusual format or not what you would expect anyway.

SHAUN- I'm a comedy writer, everything I've written is comedy, so we had this idea to write about my daughter's experiences - she's got a chromosome disorder, she's got severe learning disability but she's an amazing character, she's an amazing person - and we just thought that that perspective hadn't been portrayed on television before, and certainly not as a comedy, which we thought would be a way people might access it more easily or come to it more easily than, say, a documentary. That's why it's a comedy. I wouldn't say it's completely a comedy, it's more comedy drama. We've tried to keep it as realistic as possible sort of telling her story over the years, and obviously some of those bits are funny because she's a very funny person and gets herself into some funny situations, but also obviously there are some bits that aren't funny at all, and so, we've tried to include it all.

DANIEL- Right, well I'm going to bring William in at this point. Your daughter also has learning difficulties.

WILLIAM - Yeah.

DANIEL- And you wrote about her some time ago.

WILLIAM - Yeah, my daughter Katie is much younger, she's only three. She also has a rare genetic disease. One of her symptoms is microcephaly, which means small head, and I earlier this year travelled to Brazil and met the families of children who have microcephaly caused by the Zika virus and wrote a long article for the BBC News website. One of the things I was hoping to do was to sort of make an impact with other special needs families in the UK and for people to sort of recognise their own lives in some of these stories in Brazil. And to the extent that that happened I'm not sure, but I definitely think that happened with There She Goes. Looking at Twitter and so on after the first episode aired it was incredible. It just seemed to have made a real impact within that community.

SHAUN- I wrote it with my wife by the way; I didn't write it by myself. It's very much our story, but what's absolutely knocked me for six after the first show went out and the subsequent ones, is the amount of personal messages I've received via social media, via the BBC, it's been unbelievable. It's been more than we've been able to reply to, which hopefully we'll be able to get round to, if anyone listening has sent one of those lovely messages. We're talking several hundred either parents or siblings of people with a condition like this, a chromosomal condition, a learning difficulty, and a lot of them are saying very much the same thing which is, 'I'm watching my life on screen. I'm watching, it's like you've put a camera in my house'. And I'm so relieved that they've said that, because even though I wrote it as a personal story I obviously worried desperately about what people in a similar situation would think. I would hope that they didn't think I was being glib. And for them to all come back and say, thank god, finally I'm seeing my life on screen - we're seeing a programme that tries to understand what it's like to have a child like that in the house as it were.

I think there have been some brilliant programmes about disability on television, but a lot of them their parents are saints and do this amazing job with this terrible burden but they're absolutely stalwart parents; or you've got cases where the disability, the learning disability or autism in some cases, is seen as some sort of superpower. I've had that said quite a few times. It's like people seem to think that it's something marvellous to be celebrated. Now, my daughter is amazing, don't get me wrong, she's a stunning individual and I'm not saying that these children aren't amazing, but the first thing you think when I think of my daughter isn't that she's got some sort of amazing superpower to be marvelled at; it's that she's funny and annoying and boring and amazing and brilliant and all the things that all children are.

WILLIAM - I think my favourite tweet was there's an amazing episode, I think it's in the first episode where she hides a pooh.

DANIEL- Yeah.

WILLIAM - And somebody was actually watching that episode when they had to pause the telly and go and look for a pooh in their child's bedroom. [Laughter]

SHAUN- That's just great. The hiding the pooh thing we put it in episode one. I mean, if every week was what's happened to Rosie this week it would involve hiding a pooh.

WILLIAM - The sitcom is described as unflinching, and it is. It's very brave and it really doesn't shy away from talking about the challenges, the difficulties, the kind of emotional challenge of finding out that your baby has a severe disability and what that means for you as a family and this kind of process you go through.

Again, this is something I touched on in my article as well. I was quite worried about what would disabled people make of this, rather than parents of disabled people, they'll recognise it. But when you're talking about oh, it's really, really, really hard to raise a disabled child I was like, are people going to take this the wrong way. Was that something you were worried about? Have you had any feedback from the disabled community?

SHAUN- It is something that I worried about. I was asked a question at the charity screening about, 'have you talked to your daughter or tried to explain what you're doing?' She doesn't have the level of cognition. I'm not sure she will ever have the level of cognition to understand that she is being portrayed on screen. The only thing I'll say about that is my daughter loves the show. She loves the bits where she's on screen. She hates all the boring bits where the adults are talking, but hiding a pooh or messing about in the bath or putting a hippo in the tumble drier honestly she just rewinds and watches it over and over again. But that's a 12 year olds review. Yeah, I did worry because there is a sense that by worrying about the siblings and the parents then yes, you are sort of treating the actual learning disabled child or adult as not worthy of a voice or a vote. So, I did worry. I haven't had a great deal of feedback as yet from any of those people.

DANIEL- I should just say that we did ask on Facebook some followers of Ouch what they made of it, and the vast majority of people who did respond were positive.

SHAUN- That's very encouraging. But yes, the honest answer is that not a lot of I would imagine adults or young adults have been in touch, and I would be interested to know what they have to say.

Obviously one thing that we set out to do at all times was, not because she's learning disabled, because depicting my daughter is to show that character with a great deal of respect. It's a celebration of her life really, and if she does something silly we'll put it in the programme; if she does something funny we'll put it in the programme, like anyone. But at the end of the day if people are being made fun of it's more often than not my character, played by David Tennant, or one of the other characters rather than my daughter. I mean, sometimes she does silly things, we're not going to not put it in, but certainly at no stage was anybody involved with this project wanting to get laughs out of my daughter's condition.

DANIEL- I just had to ask you, pardon my curiosity, about the actress who plays your daughter.

SHAUN- Miley.

DANIEL- Yeah Miley, because she went for an actress who doesn't have a learning disability.

SHAUN- Yeah.

DANIEL- Maybe you could talk a little bit about that. I find her very, very convincing.

SHAUN- Yeah.

DANIEL- How she managed to get into that role.

SHAUN- Miley is amazing. The question of why we didn't cast a learning disabled actress is an exceptionally good question and it was on our minds from day one, and it was on our minds that we should look at all actors and actresses, both learning disabled and non-learning disabled. And we had a big process of auditioning and we went to a lot of theatre groups that work with learning disabled children and we had some fantastic kids audition for us and come forward, and workshop; it was a long process. At the end of the day in conversation with psychologists and the people who worked with it they just said it was too much to ask. I couldn't possibly imagine my daughter doing this role, playing this role now. There are others who have slightly less learning disability, but still it's an enormous thing to ask them to do, and in the end we thought it was unfair.

There was another aspect to it which is, as you'll know, chromosomal disorders are in aggregate, they're commonish, but specifically they're extraordinarily rare; there's a handful of people in the world who have got what Jo's got statistics wise. So, we wouldn't be able to find anyone who had the same as Jo in terms of her intellectual, her emotional, her physical development. So, we'd be either bending the character to fit the actress, which completely took away the idea of authenticity, or we'd be asking this actress just absolutely impossible demands.

DANIEL- Let's try and pick a clip now from the programme. I'm slightly sorry now we didn't pick the one of the pooh episode. But this is where your daughter in the programme, Rosie, is in the playground jumping through puddles with her ordinary shoes on when the slightly smug neighbour comes along with his daughter.

[Video clip plays]

CHILD - Why can't I go in the puddle? That's what Peppa does.

NEIGHBOUR - Because we don't have the right shoes for that, do we? You need wellies to run in puddles.

CHILD- But why's Rosie allowed to do it then?

DAD - Because Rosie's special. I mean, you're special too, but I mean she's mentally handicapped.

NEIGHBOUR - She's learning disabled.

DAD - That's what I said.

NEIGHBOUR - Well, you know.

DAD - You know that bit in the dragon pit when the hand opens the crazed zombie runs [screaming]. Game of Thrones.

NEIGHBOUR - Oh, we don't watch that.

[End of clip]

SHAUN- One of the interesting things in that clip is the whole mentally disabled, learning disabled, mentally handicapped. I was liberally littering these terms through the script, and then my wife said to me, you can't, it's learning disabled, that's what you say.

DANIEL- How could you not know that?

SHAUN- Because it's never, honestly it's never been top of my list of priorities, and I've never been corrected before. Nobody's ever said to me, you shouldn't say mentally disabled, you should say learning disabled. My wife hasn't corrected me. I mean, my wife works in health, but when it came to the script she said, 'that isn't the term; learning disabled is the term, I think we should change it'. And I said, 'well no, I don't think we should. If we're sticking to the idea of veracity and accuracy we should put this conversation in the script. We should put in the conversation where I get it wrong and I'm corrected'.

I mean, it's interesting some of the messages I've had back have included that joke and sort of put that in and said, my daughter's mentally handicapped, sorry, learning disabled. So, I think that point has landed with some of the people who have got back in touch with me. I'd be interested to know what you think of that and your listeners think of that.

WILLIAM - Those scenes with the neighbour are actually some of my favourite scenes.

DANIEL- Yeah, that was my other reason for choosing that.

WILLIAM - Basically in every episode there's a scene between your character as it were, Simon, and his neighbour, where Rosie is doing some form of extreme behaviour kind of in the foreground and then they have this completely vacuous conversation in which they don't quite manage to communicate. I mean, you get the sense that the neighbour is well-meaning, but there isn't any kind of real support there or meaningful friendship. And I just wondered whether that slightly touched on the experience of being a male carer, whether you think it's maybe a little bit hard for men. I don't know what your experiences was with your friends, for example, relatives, people at work to come and speak to you about your daughter.

SHAUN- The neighbour is based on my old neighbour, so it's another true character. But a lot of people read the scripts and said, 'wouldn't it be funnier if the neighbour was more antagonistic, if Rosie did stuff and it messed up his day or knocked something over in his garden or whatever?' And I thought about that, and I thought no, I'm going back to the whole thing about being gratuitous. I suddenly realised the whole point about - and I don't know the experiences, your experiences may be different - but everyone I come into contact with it's really rare you come across someone who's hostile to my daughter, who shows hostility. What they show is sympathy and a sort of pretty much what he does in episode one. But then uselessness because they don't know what to do, they don't know how to react. When a girl's lying on the floor sort of licking the pavement or whatever Jo does on a regular basis, then I'm used to it and I suspect parents and siblings of other children would kind of know what to do. But if you haven't lived through that you just don't know what to do. And he just stands there and it's like you just end up having this sort of small talk conversation.

The secondary point, I agree with you, I as a male find it quite hard to make small talk with people anyway, let alone if I'm having to explain or trying to engage on a level about what my daughter's up to. So, yeah, we ended up standing around having a lot of stilted conversations.

DANIEL- I think I'm your neighbour a little bit. What would you want him to do? The reason I say I'm your neighbour, I don't have a child with a learning disability of any kind, and there is a child in my social circle who does and I've become quite friendly with the father but never really known how to broach the subject. He's said the odd thing about his child, but I've wanted to ask, 'well what's it like really?' but I've never really felt whether I should. What would you want that neighbour to do?

SHAUN- I obviously have close male friends who over the years yeah, they have engaged about Jo. I think there's only a certain amount they can commit though because, I don't want to go too deep into what you might be thinking, but it might come across as a little bit lacking in substance; it's sort of like you're making small talk about it rather than…because you can just walk off at any point. So, it might come across as sort of polite conversation on a subject that involves something much deeper than a polite conversation. I'm not sure. It's a very good question.

WILLIAM - I think what I started doing was engaging, when I see a family like that, another special needs family I tend to engage with the child. Although obviously with some children that's more difficult. But if you go over and smile and try and talk to the child and communicate with the child then you're making it clear to the parents that you understand that that child is different.

SHAUN- Now that we're talking about it I think that's probably before Jo came along I would have been the guy standing around not knowing what to do. And now, I think you're right, I think I would probably make a big play about making it clear that I was all all right with this.

WILLIAM - I sometimes wonder, one of the things I noticed, one of the differences maybe between my wife's experience and mine, was that I think lots of people asked her about Katie when we were coming to terms with it and so on in the early days. And although I didn't get so many kind of enquiries I wondered in the end whether people were worried that I was really fragile and I would just sort of fall apart and that would be a terrible humiliating thing as a man to suddenly - which I might have done actually. It did feel like it was a very isolating time the early days, which in your programme we haven't really explained, but you have flashbacks to the early days when they have the little baby and they realise something isn't quite normal. And that's a really hard period.

DANIEL- I agree with what you say there about if someone had come up to me and asked slightly more searching questions about Jo in the early days, or even now, then my wife would have them on tap. And honestly walking into the studio I thought, what if they start asking me specifics about, 'when did you notice microcephaly?' Honestly mate, I can't remember! I mean, I know it happened and I know these things, and they're all in the programme and I know, but I don't have that information off the top of my head; whereas Sarah would have that. I'm not saying that's a gender thing; that's just a me and my wife thing and maybe you and…but yeah, that rings true.

DANIEL- And both of you, from what you've written William, and from what comes out of the programme, both of you have gone on a real journey with this at the beginning thinking I can't deal with this, to the point where now both of you are very obviously in love with your daughters and totally besotted by them.

SHAUN- In the programme I take her to a Baby Sing class and change her afterwards and she did an enormous bowel movement, and I always think back to that because it made me laugh. And it wasn't that moment that made me fall in love with her but it was part of that, it was part of that time where I think I suddenly realised I could interact with her.

I mean, it was very interesting reading your article that stated exactly the same things about not smiling, not engaging, not showing an interest in the world that was the same. But at that moment - maybe I'm mythologizing my past - but I suddenly felt a connection to her around that time. It took my wife a lot longer to find that connection; I think it was very hard for her. But after a long time she started laughing, and there's a moment in the programme where she laughs for the first time, and that's pretty much based on Sarah can remember hearing her laugh for the first time. And it wasn't an instant, oh my god everything's all right now, but it was such an important milestone that once that was crossed I think that started a new period where they shared more together, and then obviously moves into the next period.

My daughter's 12 now so it's been a long evolution. I suppose thinking back it's quite hard to pinpoint exactly where certain things happened. I just know that in those early days it was very, very difficult and very scary and very just bewildering.

WILLIAM - I think the scariness is a big thing because we've been talking about disability, but effectively these are children with undiagnosed diseases, and when you've got a baby and you don't have a diagnosis, and we just thought that Katie was going to die, and we carried on thinking that for the first two years. And when you think your child is going to get worse and die and you don't know what's wrong with them but none of the signs are looking very good maybe unconsciously there's something in you that holds back a little bit. I don't know. That sounds awful. Maybe, I don't suppose I'm speaking for anyone else, but maybe that happens a little bit that you just can't quite relax, you can't quite relax and just enjoy your child because you're just on edge all the time, you don't know what's going to happen.

SHAUN- Fascinating. I find it fascinating that you say that sounds awful. I mean, that's the point of a lot of what we've done in this show is you do think awful things, you just do.

WILLIAM - Yeah.

SHAUN- And you're absolutely right you think that. And you think when you have a child that's a year old and hasn't smiled and doesn't show any interest in the world and just lies there and isn't growing and has clearly something wrong then you think what William just said, or you think, do I want this. Is this going to be till the end of time? You think that. And the whole point of this programme is everybody thinks that, everybody does at some point and some various form, or they think some variant of it or they think something that is terrible or horrible themselves.

And I just hope what the programme shows is think that, it's fine to think that, that's normal. It doesn't make you a terrible person, it really doesn't; it just makes you a normal person who's had something happens to them. And I hope the programme goes on to show that in our experience it turns into something fantastic and magical and wonderful and amazing.

DANIEL- Well, thank you both very much indeed for joining me. You've been listening to BBC Ouch with me Daniel Gordon, joined by Shaun Pye and William Kremer. What's the other bit I've got to say? Do get in touch, BBC Ouch on Twitter, search for BBC Ouch on Facebook and email ouch@bbc.co.uk.

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