It features the Archbishop of Canterbury, Justin Welby, and his two daughters, Katharine and Ellie. Vicar of Dibley co-writer Paul Mayhew-Archer and young author Frasier Cox and his mum Karina.
KATE – It’s time for your regular dose of Disability Talk for July 2018. Conversation big and small – hold on, are they calling me big because you’re small?
SIMON – I’m not even getting involved.
KATE – Humour and that variety of honesty you know and love us for. I’m Kate Monaghan.
SIMON – And I’m Simon Minty. We have six guests around the table today and I have a feeling we’ll be jumping into all kinds of fascinating conversations. No pressure everyone. There’s gaining a disability later in life, dealing with mental health difficulties from an early age, compassion, sitcoms, refugees, books and the Church.
KATE – So much going on here.
KATE – Yeah. Anyway, let’s introduce our guests. Now we are very honoured to have with us the Archbishop of Canterbury, Justin Welby, and his two daughters, Katharine and Ellie. Hello everybody.
KATE – How are we all today?
KATE – Now, your press office call you ABC. You’re known as Your Grace, Archbishop; what are we supposed to call you?
JUSTIN – I’m very relaxed with Justin.
SIMON – That works for us.
KATE – Simon, are you happy with Justin?
KATE – Okay, good. Katharine and Ellie what do you call him? Do you have to call him Father? [Laughter] Your Grace, father or dad, what?
KATHARINE – He insists on formal terms only, so Your Grace is generally what we go with.
JUSTIN – Ellie, tell the truth.
ELLIE – I call him sometimes dad. Well, I call him dad or daddy, depending on what we’re talking about.
SIMON – So, he’s daddy when you want something and…
FRASIER – Depending what mood you’re in.
ELLIE – It’s more because I’m a daddy’s girl!
SIMON – Next along the table is ten year old Frasier Cox and mum Karina. Hello Frasier.
SIMON – You recently published a book.
SIMON – Can you tell me what it’s called?
FRASIER- I did. So, I published a book called There’s a Boy Just Like Me, and it centres around a boy who knows another boy who happens to be a refugee.
SIMON – I just had a little look at it and it’s all about what they’ve got in common.
FRASIER- Yeah, it sort of talks about what they’ve got in common and how they relate to each other. And then it sort of starts talking about how they’re different in a way, but if anything that brings them closer together, and how it shows that we’re all human on the inside despite what we’re going through.
SIMON – Awesome. Mum, Frasier is on the autistic spectrum but seems to have put paid to that stereotype which says autistic people don’t have empathy.
KARINA – Yeah. Autism is definitely a huge spectrum but he has a lot of compassion. And I think it’s actually helped in lots of ways because he just has anxiety, and that anxiety means that he then worries about everyone else as well as himself.
KATE – And last, but not least, Paul Mayhew-Archer. As a writer and producer of comedy he has credits which include Mrs Brown’s Boys, My Hero and Spitting Image. But seeing as we’ve got the Archbishop of Canterbury here we should also mention that you co-wrote the Vicar of Dibley with Richard Curtis. And it came about because Richard wanted to see if you could write a comedy about a good person. Is comedy generally only about bad people then?
PAUL – Well, the central characters of comedies tend to be deeply flawed, irritating, angry people if you think of Black Adder or Basil Fawlty or people like that. But actually you can do comedy about very good people because one of the problems they have is that they can’t say no, so they will end up having four Christmas lunches because they can’t let anybody down.
JUSTIN – That was a memorable episode. Mrs Brown’s Boys though I think she’s quite a sympathetic character.
PAUL – She is a sympathetic character underlying it all. She’s actually – it’s about motherhood.
KATE – Does the Archbishop of Canterbury watch Mrs Brown’s Boys then?
JUSTIN – I watched it whenever it was last on, was it Saturday, Friday, I can’t remember. It’s a good way of unwinding.
SIMON – It doesn’t unwind everybody. It sort of gets me a little bit itchy.
PAUL – There was one reviewer who wrote, “I’m sorry, after I watched this I had to go and have a shower to get myself completely clean.” And I thought that’s taking it a little bit far, isn’t it?
JUSTIN – That’s the kind of thing they say about me. [Laughter]
KATE – Right, so next month Paul you’ll be at the Edinburgh Fringe Festival with a new show about a relatively new thing for you, which is living with Parkinson’s. And we’ll be talking to you about that a little bit later. But first of all, Archbishop Justin, Mr Welby…
SIMON – You’re so excited aren’t you, Kate?
KATE – I am very excited about having you here.
SIMON – You’re just so excited!
KATE – But to put you at ease we’ve decided – and I say we, I decided – to give you a quick-fire quiz. Now, this is very quick and I want your first answers only. Don’t look at your press officer just because she’s through there to try and save you. No saving from this.
JUSTIN – I was just checking she’s not having a sort of heart attack.
KATE – Are you ready for this?
KATE – Okay, first answers only. Ready? Chips or chocolate?
KATE – Matthew, Mark, Luke or John?
KATE – Vicar of Dibley or Father Ted?
PAUL – I’m going now! [Laughter]
SIMON – That’s the problem with honesty.
KATE – Back Street Boys or S Club 7?
JUSTIN – S Club 7. I’ve no idea what you’re talking about!
KATE – Text or phone call?
SIMON – Your daughters are exasperated.
KATE – Text or phone call?
KATE – Carpentry or oil investments?
JUSTIN – Oh, neither. Boring.
KATE – Christmas or Easter?
KATE – Okay. Harsh? Too harsh?
SIMON – No, I wanted to ask supplementary questions with every answer but we’ve got to move on.
SIMON – Thank you for doing that. So, we’ve got you here, Justin, because on 13th July you are hosting a conference at Lambeth Palace about disabled people and the Church. And there are two great words that jump out to me from the press release about the event, and they are value and belonging. Lots of people listening might be used to the idea that the Church is there to help, and we know Jesus often healed the sick and the lame, but this seems to be a strong new message that the Church of England is putting out around inclusion. Can you tell me a little bit more?
JUSTIN – I think it’s something I’m very aware of, partly through family, partly though observation that the Church has, over the years, not been very good at inclusion. And we have some basic problems: you have 9,000 listed buildings, most built over 900 years ago, and they have steps and things and there’s not a lot you can do about that.
SIMON – Getting in is tricky.
JUSTIN – Did you know – sorry, I go off on my hobbyhorse very quickly – did you know that certainly up till about four years ago, and I think it’s still true, that heritage preservation overalls disability access?
SIMON – Uh-huh, we did know.
JUSTIN – And I think that’s not good enough.
JUSTIN – Anyway, so I’ve got that comment in. Secondly, Katharine’s experience and Ellie’s experience with learning difficulties and dyspraxia and mental health has really brought it to the front of my mind. And thirdly, like all of us either we have particular disabilities or we know lots of people with disabilities and the Church needs to include them and make them welcome. And there’s still an attitude that if you’re not, you know that illusion of being without disability, that somehow you’re not fit for instance to be ordained. And it’s just rubbish.
SIMON – You think that personal connection, sometimes this happens that it’s the family connection that brings it a little bit more present, or do you think that you might have done this anyway, is this a perfect storm?
JUSTIN – I think I would have done it anyway because this is something that’s been on my mind for a long time. But I think the family connection gives it an emotional edge.
KATE – I’m very interested in your thoughts and feelings on healing. Because I know that Jesus did a lot of healing, and as a Christian I’ve been in church, and obviously I have a disability, and people say to me, well have you prayed enough about it, have you let me pray for you about it. And I often think, well stop asking, stop talking to me. Is it that my faith isn’t strong enough to be healed? What is your opinion on it?
JUSTIN – I think, well first of all I’ve often prayed with people for healing, and for me the problem with healing is not that God never heals or that God always heals, it’s just that God just seems sometimes to heal.
JUSTIN – And I’ve prayed with people and seen people where there’s been a significant change, and that’s fantastic, but not in any of the things that have affected me or the family most deeply. So, I live in that same confusion.
And I know exactly what you mean: I’ve had times when something’s been going on and people have said, well could we pray for you, and if I wasn’t the Archbishop I’d have actually said, I’d really prefer that you didn’t.
JUSTIN – But I feel that I can’t always say that.
JUSTIN – What I notice about Jesus is he never treats people other than with perfect respect and love and affection. So he never manipulates, he never puts pressure on them, he never treats them in any way other than you or I would want to be treated. And obviously it’s right to pray, praying is simply about bringing what’s in your heart before God, letting him change what’s in your heart. And sometimes he changes the situation you’ve brought as well.
KATE – And have you prayed for healing for Katharine and Ellie?
JUSTIN – Yes. I haven’t prayed – I haven’t talked to Ellie about this – I pray for Katharine’s mental health a lot, every day. I haven’t prayed that Ellie – we had this discussion once around the table when Ellie wasn’t there.
JUSTIN – Which we should have probably done.
KATE – Talk about and not to.
JUSTIN – Because someone had asked me the question. We talk about a lot of things in the family and I said, what do people think. And one of your, it was your younger sister said, but if God changed Ellie she wouldn’t be Ellie, and we love Ellie. So, there’s that thing that Ellie’s Ellie, she’s precious.
KATE – And Ellie how do you feel about that? Would you want to be prayed for?
ELLIE – It’s a difficult one because sometimes when it comes down to the topic of healing and stuff, especially the last few weeks I would say, I have felt a bit like, well if God heals why am I still dyspraxic, why do I still find it really difficult to do things. But at the same time it doesn’t change the way I trust God, the way I believe in God, it’s just something… healing is a topic that I find quite difficult really to get my head around.
KATE – Absolutely, I completely agree.
SIMON – There’s that distinction of if you’re having a very acute or a very difficult time and people want you to be well; but that’s very different from just being and living with a disability, which doesn’t need healing. That’s when we want to get better access because that would be the solution.
JUSTIN – That’s right. That puts it very well.
SIMON – It depends where they’re at. I have a question for the modern church. I think it was a date, I met a young lady not so long ago.
KATE – Hold on, you think it was a date. Were you on a date or were you not on a date, Simon?
SIMON – I thought it was, I don’t think she did. [Laughter] And she revealed to me that she does healing hands. And I was like, oh this is interesting. And then she went on and said, but I can’t always get there because it’s a lot of travel so I do it down the phone. Does that count? Can you do healing down the phone? Paul?
PAUL – Well, I have a friend who’s in Yorkshire and she sends me healing. But I don’t think it’s down the phone. I think it’s just through the ether.
PAUL – And she certainly doesn’t text it do I don’t know. And I don’t quite know whether it’s having an effect or not, because I don’t know when she’s sending it.
PAUL – So, is it on a day when I’m feeling a bit better. I don’t understand.
KATE – Justin, can we have healing down the phone or via text message?
JUSTIN – Well, healing isn’t the… no one heals anyone in that way. It’s God who does the healing, and God can do it any way God likes to do it.
PAUL – Can I ask, has your faith been tested at times by…?
JUSTIN – Oh hugely. It’s reasonably well, well very widely known that one of our children died in a car crash. And in the five days she was in hospital, it’s a long time ago now, everyone in the church and we were praying, everyone was praying. And then we’ve had various serious illnesses. A year later one of our children was very, very seriously ill. And yes, there have been moments where it’s been a huge test.
But I start with the fact that Jesus rose from the dead, and then I say I’m going to have to put a lot of these things onto a list that I’m going to ask awkward questions about when I meet him.
PAUL – Right, yes. But you’re prepared for that?
JUSTIN – Yeah. I just say well, you read the bible and life’s not simple. And obviously not everyone gets healed because all the apostles are dead, so you can draw the conclusions really: they all died of something.
JUSTIN – I remember one of the episodes – the only reason I said Father Ted…
PAUL – No, no, that’s perfectly all right.
JUSTIN – I’m really worried about that.
PAUL – I love Father Ted.
JUSTIN – It’s just that she’s so very good at what she does. And I was in a rural parish and I’d just occasionally feel I wish I was a bit better at what I’d done. [Laughter] She said something about this, she has a lot of questions to ask God.
JUSTIN – You know you did those little dialogues at the very end.
PAUL – In the vestry, yes.
JUSTIN – The vestry sort of things, and that often comes up in that kind of thing. They were great.
KATE – Can I just bring Katharine in now? You live with mental health problems.
KATE – Do you find that that tests your faith and your maybe belief in healing or just generally belief in God? Because we all know what it’s like to have a very dark time.
KATHARINE – Yeah. Healing is one of my kind of hobbyhorses really when it comes to Church and inclusion and welcome, because if it’s the first response when people hear that you’re having a hard time – and I’ve had it lot where someone comes up to you, you’re talking to someone after the service and they say, how are you, and I tend to say how I am, which is not always good – I find that often the response will either to be to walk away, kind of looking a bit uncomfortable, not without saying anything but be like, “Oh right, that sounds hard, I’ve just got to um, uh…”
SIMON – It’s a sort of conversation stopper.
KATHARINE – Yeah. Or to offer to pray for healing. And I think with mental health, as with any disability, if your first response is, can I pray for your healing, then you’re not listening. Because actually: A, you don’t need to say to someone you’re praying for their healing for God to be able to work; God’s bigger than that; and B, it really shuts down the conversation. I now actually only let a very few people pray for my healing because I’ve had so many really awful experiences of things that people have said and the way that they’ve behaved. They don’t do it on purpose, they’re trying to help, they’re trying to be helpful, but they’re not listening. And inclusion and welcome in church is about so much more than accessibility physically. It’s about…
KATE – Like what? Can you think of a time when it’s happened?
KATHARINE – What people have said to me?
KATE – Yes, and you’ve had to…
KATHARINE – I was once prayed for, I went up for pray and someone prayed an addiction to negative thinking off me. And I’m like, I’m not addicted to negative thinking, I’m depressed and anxious medically so. And actually it’s a chemical thing going on with me, it’s not an addiction. And that was really unhelpful. And even though theologically I think I’m reasonably aware of the fact that that’s just not an accurate way to pray for someone, even then I felt very unsettled by that and I went and got somebody else to pray for me, to pray the prayer that had just been prayed off me.
SIMON – No. A counter prayer.
KATHARINE – Yeah. Please counteract this ridiculous person’s prayer. [Laughter] I think there’s so much more that you can do as a first response to somebody who is coming to you with these kinds of issues.
KATE – And what would you like that first response to be?
KATHARINE – Well, things like I once spoke to a church where you’d arrive and there’d be four people on the door to welcome you, so you’d already be like welcome, welcome, welcome, welcome, and you’re like ah. And if you’re really anxious, I would rather come in and get my bearings. So, you’ve already been bombarded by people that you don’t necessarily know, who are all smiling and being very friendly. And then you go in and there was the café right at the back, so you go in to a whole crowd of people, you’ve got no time to get your bearings.
And something as simple as that, as just having one person on the door to say, “Hi, welcome” and you can get in and you have space to work out where things are before you have to get involved in meeting people or doing whatever, just that gives you that moment to catch your breath.
KATE – And Ellie, how would you like to be welcomed? Like coming into church what would help you, what would you like to see?
ELLIE – I’d quite them to be a bit more aware of who is coming in, not to be kind of there. Just look out for who might need a bit of assistance. Don’t come over and make a big fuss, because this can be quite in your face. Just be a little more welcoming. And if you notice there’s someone new in your church who might look a bit shy or they’re struggling to stand for a whole service pay attention and take it in. Don’t be overbearing but gently go over and ask, is there anything I can help you with.
But in the church I go to now I sit at the back because I don’t really feel comfortable. They’re very friendly in my church, but sometimes I can feel a bit out of place there, so I tend to sit at the back. If anyone comes over that’s great, if they don’t, I go to work afterwards anyway, so… Yeah.
SIMON – I always think there’s that tricky bit with disability when someone, and it’s not always religious, it could be generally when they’re coming over and trying to be kind to you but actually it’s a bit too much.
SIMON – And then you’ve got to be careful how you push back, because you don’t want to become rude, but at the same time it’s a bit… I mean, broadening it out, Justin, in terms of the conference and how the church can be more accessible for those people who might not fit in at the moment, what are some of the things you’re hoping for?
JUSTIN – Well what we’ve worked very hard at for the conference is that there are various disability groups within the Church of England, and I think we’ve got pretty well all of them coming. It’ll now turn out of course that we miss someone, but I think we’ve done our best to get everyone there. And I’ve got to sort of switch from transmit to receive at this conference and not only listen to the stories, but listen to people’s suggestions and think, okay, let’s put together how we’re going to work at the culture, how we’re going to change things. What are the things we can change quickly? What are the things that will take longer?
I mean, I find it absolutely extraordinary that ancient buildings, that disability access comes second to heritage. I really find that bizarre, because that means that people come into these fabulous, amazing spaces, and I’ve run, I’ve been in charge of two cathedrals, or one cathedral, and second in charge of another cathedral, and the negotiations you have to go through so that someone with, for instance a mobility issue, is able to get and see the things that everybody else can. Well, that’s one way of saying we don’t care about you, isn’t it?
KATE – Right at the access point.
JUSTIN – Right at the access point.
KATHARINE – That’s before you even get into the cathedral.
JUSTIN – So we’ll listen to that, we’ll try and come to some common views, but the main thing, I’ll be sitting there listening and taking lots of notes, and thinking okay, how between us in the church can we…? What happens in the parishes, on the whole, people are brilliant, because people, they do care for people.
SIMON – And they know people and it’s… yes.
JUSTIN – They know people and they say, “Oh, it’s Ellie,” you know, or they say, oh it’s, you know. And there’s a real acceptance, but what we need is for that not to be in spite of the institution but to be because of the institution, if that makes any sense.
SIMON – Well yes, it’s a kind of a rule or a policy that might be a little bit old. I’m thinking of some disabled friends who, the nature of their condition would mean, I don’t know, involuntary noises or sounds and movements and so on.
JUSTIN – Yes, absolutely.
SIMON – Could you see a day where they can come, they can pray, and they’ll be making exclamations? I’m thinking of Jess Thom with her Tourettes. It’s almost like a relaxed performance in the theatre. Do you think this will come?
JUSTIN – I think we can… Yes, I mean there’ll be many parish churches where that would be fine, once they got to know someone. And you do have to go through a process of educating people.
KATHARINE – To get rid of the frowns.
JUSTIN – Get rid of the frowns and the tuts.
SIMON – I thought the tuts.
JUSTIN – The tutting churches.
KATHARINE – But that’s the problem, because actually you need to educate first, because if someone goes in and the first week they’re there they get tutted at then they’re not going to come back.
PAUL – They won’t come back.
JUSTIN – They won’t come back, that’s exactly the point.
KATHARINE – So you’ve already shut someone out at that point.
PAUL – And it’s what you were saying about the fact that if people come across and say can we do anything, the more open that question is, rather than saying we assume we know what you need, that’s the worst thing you can…
KATHARINE – It’s about listening.
KATHARINE – I mean the thing that Ellie said about standing or sitting in church, you know, I often find it uncomfortable if everyone else is standing to sing and I, you know, I’ve got chronic fatigue as well, and I then need to sit down, then you can feel quite uncomfortable, like people are looking at you like you’re not paying attention or not engaging properly or something.
JUSTIN – Funnily enough, I’ve just noticed in the last six months to a year that increasingly I’m finding in more and more services people are saying, where it says in the service sheet please stand, stand if it’s convenient, if it’s not, don’t worry.
SIMON – That was the Paralympics. Stand if you can.
JUSTIN – Stand if you can. And that’s a very small thing but it doesn’t half change… change the atmosphere.
PAUL – Because none of those things matter do they?
JUSTIN – No, it doesn’t matter tuppence.
SIMON – Well, also when I’ve been in church and everyone stands it makes no difference whether I’m standing or sitting, I’m the same height, because of my height. So I don’t bother, but I’ve also thought, well I know God’s going to be fine with this, this really isn’t the critical bit, it’s just the other people. So that’s the bit we need to maybe unravel.
KATHARINE – It’s culture and attitudes and understanding that everyone’s needs and capabilities are different and that everyone’s style of church or way of connecting with God is different as well. Because actually, I find it a lot easier to focus on God if I’m sitting down, because I’m so tired that if I’m standing up I’m thinking about how I’m going to remain standing, rather than focusing on God.
KATE – Absolutely. And there are some great churches out there that do things really well, you know.
KATHARINE – There are some brilliant ones.
KATE – It’s not all churches. Some churches, there’s a long way to go, but other churches are fabulous and brilliant.
SIMON – The Church of England Disability Conference will take place on July 13th. I hope it goes really well.
SIMON – A bit of a handbrake turn away from disability matters for a second. Justin, this is my mum’s question. You’ll be christening Prince Louis soon, these big occasions, what are they like for you?
JUSTIN – Er… very nerve wracking. You know, if you’re at the wedding don’t drop the rings and if you’re at the baptism don’t drop the baby. It kind of matters. No, it’s huge fun. The baptism, they’re a wonderful family, there’s lots of love and it’ll be a great occasion, I’m looking forward to it. It’s a huge privilege to do it.
KATE – And did you get some tips from Bishop Michael Curry for the next sermon?
JUSTIN – I’m not preaching at that service. [Laughter] Yes, if I could preach like Michael I’d be really, really happy. No, it was just fabulous.
KATE – It was quite the moment wasn’t it?
JUSTIN – It was spectacular. It was spectacular. I saw… what really… the following Monday I think it was, one of the biggest national selling newspapers printed the entire sermon verbatim and put at the top to their readers, ‘Cut this out, put it on your wall, and when you’re feeling down read it’.
JUSTIN – And, you know, I don’t know. If I could get there I’d be a very happy bunny. [Laughs]
KATE – Now Archbishop Justin, Katharine and Ellie are going to stay with us and dip into our discussions for the rest of the programme. But now we’re moving on to talk to you, Frasier, and mum, Karina. And I do think Archbishop Justin might be particularly interested in your book, because he’s talked a lot about how we should be helping child refugees in particular. Now, Frasier, you beat 1,300 other children in a competition to get your story published by The Book People. 1,300 other kids?
KATE – That’s quite something. Now have you always enjoyed writing?
FRASIER – Yes, I’ve always enjoyed it. My love of books, which I definitely do have, has really converted into a love of making books and a love of writing, yeah.
KATE – And how did you get into this competition then? Where did this story idea come from and what made you enter it?
FRASIER- Well, originally the story itself was actually a piece of homework, and I did it and we just had to write a story, and I think through my passion, I’ve always had a passion for these refugees, and I thought this was the perfect way to sort of express my passion. So the homework did really well and I thought, you know what, this has a really good message, I could spread it on. So I tried to find some sort of way to get it to do something else. So when I saw the competition I thought that was my perfect opportunity.
KATE – And what’s your book about?
FRASIER- So, it’s about this boy who lives in a country that doesn’t have refugees, and what happened is he knows about this other boy who has come to this country who happens to be a refugee. And he starts thinking about this boy and he thinks about how they’re the same and then he starts thinking about how they’re different. And that leads up to how it shows that they’re the same on the inside and it shows how, not just those two boys, all of us as humans are all human on the inside and we can all come together as a community.
SIMON – So the comments from people who have bought the book on the website had pretty similar words of praise. Here’s an example. “I am stunned that this book was written by a nine year old boy. The story is beautifully written, it carries a powerful message, and the illustrations are stunning. My children, who are ten and six, love the story, and my ten year old was incredibly inspired by Frasier’s journey to becoming a published author. Highly recommended.” So what do you think about that then?
FRASIER- I think that when I entered it and when it won, when I was seeing it being published and seeing the illustrations and just the book itself evolve into what it is today, I was really thinking about the message that I put into it, and I was actually wondering how the book is going to incorporate that message. Because I think one of the most important things about my book is how it sort of spreads this message and show and educates these people about these refugees and why it’s important to help them. So when I saw the response from everyone I was very happy, because I knew that the thing that I’d worked hard to get taken in has worked, and my cunning plan has worked. [Laughter]
KATE – It certainly has. How do you think your kind of autism and Asperger’s played into being able to write this story?
FRASIER- Well, as having Asperger’s, people with Asperger’s have anxiety and it affects how we think about other people and it makes us feel very worried about some people. And I think when I found out about refugees when I was much, much younger Mum was getting some stuff together to donate and I kept asking her all these questions. And I wanted to know why it was happening, because I just suddenly became really passionate when I found out why is this happening; are they going to be okay? And I think that really does relate to my Asperger’s.
PAUL – Can I ask, what’s the downside of your Asperger’s? Because it just seems to me you’ve written this extraordinary book and you’re extraordinarily eloquent talking about it, I mean it just seems like…
KARINA- It’s other people.
PAUL – It’s other people.
KARINA – Yes, it’s just the non-understanding and the non-compassion from everyone else.
PAUL – And how does that express itself? How do they… ?
KARINA- I think it’s just that, you know, he’s great, I love him obviously, I’ve always known that he was autistic since he was tiny, but he was my first child, so I’ve always…
PAUL – But what is it other people do then?
KARINA – I’ve always understood him because he’s my first child. He’s always been that way, but other people don’t. He’s non neurotypical and other people will only understand neurotypical people. So if he goes into a classroom and actually doesn’t want to socialise with the other children, wants to go off and play with something and they’ll be like, oh he’s a bit strange, he’s a bit weird. And that’s not the case, and he knows that, but it’s other people that think that.
KATE – Does it bother you?
FRASIER- Yeah, it really does. Yeah, I find it quite easy to get offended by these people who don’t understand because it isn’t actually my fault, and what these people just need to know is they need to know that actually on the inside I’m a really nice person and on the inside I’ve got the same potential as them. And it really bugs me that not everyone is as understanding.
PAUL – So the truth is that it’s the other people who are disabled isn’t it, because they don’t have the ability to understand you?
KATHARINE – Ellie’s had very similar experiences with other people haven’t you?
KATHARINE – Other people not understanding you and making assumptions.
FRASIER- Yeah, it’s hard though. They just think because we’re not the same as everyone else that we’re just odd and that’s not the case.
SIMON- You’re nodding, Ellie.
ELLIE – Exactly. You’re exactly right. I have struggled a lot, people have looked at me and basically I know the look now. It’s literally like you’re not disabled, why are you sitting there? Or, why can’t you do this? Because dyspraxia is unseen…
KATHARINE – And learning difficulties.
ELLIE – And learning difficulties are unseen, I’ve been discriminated against quite a few times because they don’t understand it.
KATHARINE – She had a ticket inspector on a bus once tell her she shouldn’t have her disability travel card.
KATE – Justin, that must be hard for you.
KATHARINE – Can I just say, Dad did a very good Dad face there?
ELLIE – I’ve never seen Mum so angry.
KATHARINE – Dad angry face.
JUSTIN- We were… But you must have this as Frasier’s mum.
KARINA- I do, and actually both of my other children have disabilities as well, so between the three of them you get it all the time.
JUSTIN- You get it all the time, and Frasier, I mean, it’s the same, when Ellie says you can’t see it can you?
JUSTIN- Because if you’re sitting on a bus nobody would look at you and say, “Oh, he’s got Asperger’s.”
JUSTIN- And then they don’t make any allowances. And when they do see there’s a difference they don’t treat you as though you’re just a human being like every other human being.
FRASIER- Yeah. What we need them to think is when they do find out we’ve got Asperger’s and we’ve got all sorts of different things they then need to then go, okay, well we completely understand, we’re going to support you, but we’re not going to support you so much that we treat you as if you’re not human. And that’s what some people do, they don’t treat us like an ordinary human, which if anything helps us with that.
SIMON – I suspect you’ve got something in common with Archbishop Justin, in the sense of your sense of injustice. The fact you’ve written about refugees and there’s that lovely story about you with the homeless person saying, “Why don’t we just build a home?” Is that part of your Asperger’s, or is that just you being a good person?
FRASIER- Yeah, I think my Asperger’s, I see the world differently, so when I see these people, these people who are being greedy, who are taking while others don’t have, all of that, I just don’t understand how they think that. And it’s a bit of a struggle because you find it hard to understand other humans. And yeah, I definitely think that.
KATE – Justin, do you think younger people are sort of more compassionate than us older people?
JUSTIN – I know a lot of people say that, but I don’t think so.
JUSTIN – No, I think schools and places can be incredibly cruel. I think one of the things I’m very passionate about though is, again from our own experience and from being a school governor and chair of governors and so on in a comprehensive school when the children were growing up where we were living, is the introduction of not separating people with disabilities completely so that people get used… People as they go through school, they don’t think, that’s Frasier who’s Asperger’s, they think that’s my mate Frasier. Or they don’t think that’s Ellie, you know, Ellis who’s got dyspraxia…
KATHARINE – From the bottom set. That’s the thing that I hated, the bottom set, you always ended up in the bottom set with all the naughty children as well.
JUSTIN – Yes, I’d forgotten that.
KATHARINE – You either have the naughty children or just lots of other children with lots of complicated issues, and then actually, because there’s so many children in one class who need more attention you don’t get the attention.
JUSTIN – If you’re quiet or if you sit a bit by yourself then you don’t get the attention so much.
FRASIER- Yeah, that’s quite annoying, because like usually when the teacher puts us all in tables she always puts me with all the other children with autism, all the other children with ADHD and things, and I just think that’s not what I want. I don’t want to be separated.
FRASIER- Yeah. I want to have help, but I don’t just want to be categorised and separated from everyone else, I just want to feel normal.
JUSTIN – Because you’re you, you’re not a thing. You’re not a category, you’re a person.
PAUL – There’s an assumption they know best isn’t there? And they don’t know.
KARINA – I have to stick up for his teacher at the moment though, because she doesn’t do that.
FRASIER- No, I meant some teachers. She does not do that at all.
FRASIER- Some teachers have done that in the past.
JUSTIN- But you see, I was really struck by something you said, you see the world differently. And leadership, and what it takes to change things is often… And the thing I always worry about myself is I just see a problem, you see possibilities and solutions, and that means you can take a lead in a way that lots of other people can’t. I think that’s absolutely spectacular. As you’ve done with the book.
KATE – What do you think, Frasier? Next Archbishop of Canterbury? Would you like that job? What do you reckon?
FRASIER- Yeah, yeah, definitely. [Laughter] Some sort of leadership would be fantastic.
SIMON – I think you’d be pretty good at it. You’ve got a second book already lined up. This one features the famous Downing Street cat, Larry. Can you tell us a little bit about that?
FRASIER – So this one I still want to have some kind of message in, but it’s less on the serious side, and I want to try and make it funny in a way. And it’s about this cat called Larry who is actually a real cat who is what they call The Chief Mouser, and he/she would live in Number 10, Downing Street and because they’re such old buildings they have lots of rodents and their job is to get rid of the rodents. And that is actually a real thing and Larry is a real cat. And I just thought what must it be like to live on Downing Street, and I’m going to try and write it from their perspective and…
KATE – And hear all their political meetings and things.
FRASIER – Yeah. He’s going to go on an adventure.
SIMON – But will Larry have your mind? So Larry will be able to see how to solve some of these issues as well hopefully?
KARINA – I’ve read a few bits that he’s done already and spoken about it with him.
KARINA – It is good. He’s done one bit where, so Larry overhears… I’m sorry, I’m giving away all your secrets.
KARINA- But Larry overhears the world leaders having a conversation that he doesn’t agree with and they’re having an argument and he’s very cross about it and then he talks about how he’s friends with all sort of animals across London and he doesn’t understand why the world leaders are cross when he can be friends with all of these other people.
SIMON- Frasier, you need to become friends with Paul… as well as taking Archbishop Justin’s job, you need to become friends with Paul, he’s written satire all about politics with ‘Weekending’ and ‘Spitting Image’. This is ringing bells for you from your earlier writing days?
KATE – Frasier and mum, Karina, thank you so much for joining us. Now, ‘There’s a Boy Just Like Me’, which is your book, is available now on The Book People’s website, and at least 35% of the money made will go to the charity, Save The Children.
SIMON – Are you staying with us?
KARINA – Yes, we can stay.
SIMON – That’s great. Paul Mayhew-Archer has one of those memorable names which you may remember from the end of radio comedy shows in the ’80s because he’s produced hundreds of them. For television he’s worked variously as script editor, producer or writer on some of the classic comedies we’ve already referenced today. Catching up with him now, he’s about to perform a one man show at the Edinburgh Fringe… Oh, a little bit of a hesitation…
SIMON – And as we’ve heard, it’s about how he now lives with Parkinson’s. A month at the Fringe is going to be quite physically demanding.
PAUL – 25 shows in 26 days, yes.
SIMON – And this is your first time for stand-up?
PAUL – First time ever. So yes, my first go at stand-up really was last year. There was a Parkinson’s fund raiser at the Albert Hall and I did two minutes there.
KATE – Your first gig was at the Albert Hall? [Laughter]
PAUL – Yeah I know, it’s downhill all the way really. My second one was at the Comedy Store in London, that was ten minutes, and now it’s at a little place, the Underbelly Friesian in Edinburgh. And then probably it’ll be a sort of toilet somewhere, if I’m continuing on my downward path.
FRASIER- Yes, I’m just going to have a little play at the Albert Hall and then I’m going to go back home, playing at some shop somewhere.
SIMON – So the terror just doing stand-up comedy, but then the Parkinson’s, is this going to have an impact? Do you have to manage it?
PAUL – Well, I do have to manage it, yes. It’s strange, because I’m on tablets and people with Parkinson’s are on or off, and when you’re on and the tablets have kicked in… I’m on at the moment, you’ll be pleased to know, so the tablets have kicked in and I’m sort of fully functioning, and then when the tablets wear off I sort of go a bit wobbly and slow and I start slurring a bit. And I was doing a… I won’t go into details. Anyway, I was doing a charity thing at a golf club, very elderly golfers, and half way through my tablets suddenly wore off and I couldn’t… My brain just went AWOL, and all I could think of was my wife saying, “Whatever you do, don’t tell that story.”
And that was the only story I could think of, and so I told… I’m not going to tell you what that story is, [laughter] you’ll have to come and see the show to find out. Because all I can say is I looked round the golfers as I was telling this story, and it was like that moment in ‘The Producers’ when the audience is watching ‘Springtime for Hitler’, sort of gobsmacked looks of absolute horror. And one golfer, who went “Yeugh”. I’m sorry, I can’t tell you.
KATE – I assume you didn’t get asked back then?
PAUL – I have not been asked back. [Laughs]
FRASIER- Have you recorded that, because if so, I’m giving you my email address.
PAUL – I will personally send you a copy of it.
SIMON – Will you reference your Parkinson’s in your show?
SIMON – And forgive my clumsiness, are you going to time it so perhaps the drugs sort of wear off towards the end so you get a bit more authentic at the end?
PAUL – Strangely, that’s a bit too much of a risk for me I think. The thing is, if the show goes well it should be an hour. And if the pills have worn off it’ll be five hours, which is, you know, but fantastic value for money when you think about it.
But it’s quite important to me, because I did a documentary a couple of years ago. I’d never done a documentary before in my life, and I did this documentary called, ‘Parkinson’s: The Funny Side’ because from the moment I was diagnosed I decided somehow to find the funny side in it, and to think of it in terms of jokes. And because I do that it makes me feel better.
SIMON – You won an award for this?
PAUL – I did, I won best [laughs], I won Best Documentary Presenter of the Year at the Grierson Awards, which is a very prestigious documentary award.
SIMON – So first documentary…
PAUL – I’d beaten Louis Theroux.
SIMON – Sorry, I talked over you. First documentary you win an award, first stand up gig, Royal Albert Hall.
PAUL – Yeah, I know. Yes, it’s weird. And now I’m sitting next to the Archbishop of Canterbury. You know, this Parkinson’s has opened up all sorts of amazing opportunities for me in the way that I…
JUSTIN – It’s the other way, I think being Archbishop of Canterbury has opened up enormous opportunities for me. I’m sitting next to you, the person who wrote ‘Vicar of Dibley’.
SIMON – How do you balance it, Paul? Because I have a very good friend, diagnosed with cancer very recently, and I spoke to her for the first time and all she was doing was making jokes. And after about 20 minutes I said, “We’ve got to stop the jokes, I want to talk to you seriously about it.”
SIMON – And I know I do jokes to sort of just relax people. How do you balance that?
PAUL – Well, I mean, the thing is… Well, it’s interesting you should mention cancer, because one of the reasons I talk about the funny side of Parkinson’s, and I talk a bit about the serious side as well, is because it springs from the death of my mum, because my mum died when I was 20 of cancer. And she’d sort of had one form of cancer or another all my life, and we never talked about it. It was in that era, this was 45 years ago, 50 years ago, never spoke about it at all. I didn’t know whether she knew she was dying at the end, so we never said goodbye because we couldn’t have that conversation.
And it wasn’t until I was sort of… Strangely, I was having counselling when I was in my 40s and I was talking about my weird family, because my father subsequently married my wife’s mother, so I’m married to my step sister and I am my son’s uncle. So get your heads round that.
SIMON – That’s in the show I expect.
PAUL – Yeah, it’s a sitcom, ‘Family’, but this counsellor said to me, “So where was your own mum?” and then I started talking about what had happened to my mum, and it was then that I realised, that’s why I’ve been trying to write comedy all through my youth growing up, because I was trying to make me laugh in a home which had little laughter.
KATE – And was it around then that you lost your faith?
PAUL – It was around there, yes, it was when I was about 16, 17? Yes. I’d been a server in the local church.
PAUL – Well, a server, so I was assisting the vicar. I was in my cassock and surplus and I was assisting and preparing the sacraments. And I remember Christmas midnight mass, midnight service, Christmas, church packed. I hand the vicar the box of wafers, he consecrates them, turns them into the body of Christ, hands back the box to me. I then open the box, I don’t know how I did it, but I opened it upside down and the body of Christ fell all over the floor. We had to have two extra hymns while the audience was sort of.. the congregation – audience? – congregation were… I mean, it was just horrendous. So he may have been quite pleased that he lost my faith, I don’t know, because he managed to avoid any more terrible sort of…
KATE – The Archbishop is there.
SIMON – Bishop Justin, you shook your head and then you did a face palm. I’m wondering what was going through your head with Paul’s story?
JUSTIN – I remember a midnight communion where someone, it was worse, carrying the goblet of wine…
JUSTIN – Turned at the beginning of the row where everyone was kneeling down to receive communion, tripped, and pushed the chalice forward as he fell, and it must have got 12 people I should think.
PAUL – That is fantastic though. So they all got their wine.
ELLIE – Well, they all got their wine didn’t they?
JUSTIN – It was quite spectacular. So I mean, yes, I know the feeling. But the great thing about these things is the vicar’s always done stupider things than anyone else.
KATHARINE – And they make very good stories.
PAUL – They do. But I sort of, I mean, so the cancer we never talked about, and I think there is progress being made now, because I do work for Maggie’s, which is a cancer support charity, and they have a sort of… they embrace laughter as a way of getting a conversation going. And in fact I was amazed, Richard Curtis and I opened the Oxford Maggie’s Centre and we were asked to write a funny poem about cancer.
So because you were saying about the balance of the comedy, the comedy can lead you into the seriousness, it breaks the ice, because comedy is… When we all laugh together it’s a way of belonging. When you’re in an audience, if I go to any play I have no idea whether people are enjoying it or not, if it’s a serious play because we’re all locked in us, but if it’s a comedy and we’re all laughing we know we’re part of a group.
SIMON – Very interesting. It must be one of the hardest questions for you, Justin, you must get asked so many hard questions, but if someone says they’ve lost their faith how do you respond to that?
JUSTIN – Well, I know how I don’t respond, which is in any sense to judge or be condemnatory. I think everyone’s life’s their own. Because I don’t think of it as my faith, in my terms, I just… I grew up going to chapel morning and evening at a boarding school for ten years, and the only interesting thing that happened in ten years was the headmaster falling out of the pulpit. And we did our homework behind our hymnbooks, because that was the best way to pass the time. So you had your French irregular verbs hidden by a hymnbook. And that’s what you did.
And I didn’t find the reality. The clergy at the school were wonderful people, they were really, really kind, but I didn’t find the reality of something until after I’d left school and met people in Kenya in East Africa who seemed to have this relationship with God that I didn’t have. And it was that example, and then the resurrection. If Jesus rose from the dead then everything else has to follow one way or another. It doesn’t mean you don’t have problems with God.
And I was reading something this morning from the psalms, psalm 88, which I think was written by someone with very severe depression, because he’s, whoever the psalmist is, he or she, says, “I have no hope. All my friends have left me. Everything…” And he goes on for quite a long time about this. And clearly the only thing they cling to is they believe that God exists, they rather suspect that God’s against them. So when I hear that I think, hmm, God doesn’t lose faith in us because we lose faith in him. But I haven’t got a good answer.
SIMON – It’s a great answer. And you also mention the depression, and I know you’ve talked about Churchill getting the black dog and moments where it’s got sort of close to you but not fully so, yes.
JUSTIN – Yes, and Katharine and I talk about this, and it took us a long time, poor Katharine, to understand what was happening in her life really. And just sort of realise that this was just an illness, like other illnesses, it’s a real… And it’s not a rational illness, you’re not depressed because your life’s bad. You can objectively say everything’s wonderful. Someone I know very well said to me, “I have a wonderful family, I have great friends, I’m doing really well in the things I do. I just want to die.” You know, it’s not rational, but it’s there. And it’s no different in that sense from Parkinson’s, you can’t rationalise away Parkinson’s, you’ve got it.
PAUL – It’s what Katharine was saying about chemical, Parkinson’s is a chemical thing, it’s the lack of dopamine, which means that it sort of… The messages, it’s like my brain is like a satnav that keeps saying, “Recalculating route,” but can’t actually find one to…
KATE – Do you have ways to kind of replace that dopamine?
PAUL – Well, they say, well the drugs do, physical activity can sort of do it. Setting yourself challenges and trying new things is a way of sort of lighting up different bits of the brain.
SIMON – What about the rush of laughter?
PAUL – And the adrenalin rush. So I do jokes, I feel better when I think of the jokes. I then go to a Parkinson’s group and I tell them the jokes and they feel better for me telling them jokes, and that sort of… So they laugh, and that makes me feel better. And the blacker the better. I was saying that I was talking to a professor and I said what a pity it was that Robin Williams had killed himself, because, you know, I thought he could bring a lot of publicity to Parkinson’s.
And this professor said, “Well, we don’t think he had Parkinson’s.” I said, “I thought he did,” and he said, “No, no, no, he had Lewy Body Dementia which is related to the Parkinson’s, but we don’t think he had the Parkinson’s.” And I said, “Why?” and he said, “Well, because he killed himself. It’s very unusual for people with Parkinson’s to do that.” I said, “I didn’t know that,” and he said, “Yes. You see, the thing is people with Parkinson’s do get extremely depressed, but one of the other symptoms is apathy, so they may feel like killing themselves but they just can’t be bothered.” [Laughter] And I tell that to groups of people with Parkinson’s and they love it.
SIMON – Yes, always an upside.
FRASIER- You’re spreading the happiness around.
PAUL – Spreading the happiness around.
JUSTIN – Oh, I couldn’t, I would use that one, but…
PAUL – But it is, and the things people say to you. There was a neurologist, my wife asked him, he has a wonderful way of delivering news, like a roller-coaster, because he has to tell you the truth, but at the same time he doesn’t want it to depress you. But on the other hand he has to tell you the truth. So my wife said, “Does Parkinson’s affect life expectancy?” and he said, “Well, very interesting, I’m glad you asked me that because we used to think it did, and then about four years ago we decided that it didn’t. But now we think it does.” [Laughter] Long pause before…
SIMON – So another potential upside, you have an obsession with chocolate, you celebrated the diagnosis of Parkinson’s by going to Chocolate World?
PAUL – To Cadbury’s World, yes.
SIMON – Cadbury’s World, sorry, yes.
SIMON – This isn’t related to Parkinson’s is it? You’ve always had the chocolate thing?
PAUL – A lot of people with Parkinson’s do love their chocolate, yes, and I was told it does produce dopamine.
SIMON – Do you think it’s an obsession?
PAUL – Well, it is an obsession and it’s an increasing obsession, except my wife has now banned chocolate.
PAUL – No, she’s a very cruel woman.
PAUL – Yes, yes. It’s unjust isn’t it? No, because I was putting on too much weight. I mean, literally, if you gave me a huge kilogram bar of chocolate… You know you can get these kilogram bars of chocolate? In airports particularly.
KATHARINE – I’ve had those before. They’re good.
PAUL – Well, I could easily polish one of those off in a day.
KATE – That is quite a skill.
SIMON – Bearing in mind, Justin… Easter, maybe that’s your favourite festival. Maybe we’ll get you two together, the chocolate and… Oh no, that’s not the real reason is it? I can’t believe I’m even saying that to you, I’m dead embarrassed. [Laughter]
PAUL – You’ve got to be able to party.
SIMON – A chocolate party.
KATE – Now Paul, you’ve got your show on in Edinburgh, where can we see that?
PAUL – You can see it if you’re in Edinburgh at the Underbelly Friesian, which is in Bristow Square, and it’s on at 5:15 every day, except 13th August, for an hour.
KATE – And that’s your day off, 13th?
PAUL – The 13th is my day off, yes. From 1st August to 26th August I’m doing the show. And I’m looking forward to it enormously. I absolutely love doing stand-up.
KATE – And what’s it called?
PAUL – It’s called Incurable Optimist.
SIMON – And will you be flyering, giving out your…?
PAUL – There’ll be lots of flyering and lots of all that. We’re just sorting out the best poster at the moment. And I’ve been doing try outs of the show and people have been very nice so far, so yes.
SIMON – We wish you very well.
KATE – We’ll try and catch it while we’re in Edinburgh.
FRASIER – Yes, good luck.
PAUL – Thank you very much indeed.
KATE – Well, that’s it for our monthly Ouch talk show for July. Simon and I will be back again in September after a summer break, and from the beginning of August Emma Tracey will be here on this feed with many interviews from disabled artists also at the Edinburgh Fringe, some of whom are there for pure laughs, others there to make political points. Ouch’s own Storytelling event is also at the Festival, presented by Lost Voice Guy, good friend of yours and mine.
SIMON – Very good friend of yours.
KATE – And free tickets are available at www.bbc.co.uk/showsandtours. Those tickets are free, Simon. Free.
SIMON – That’s worth having.
KATE – It certainly is. If you can’t get to see it in person it will be on TV and on the BBC iPlayer in the autumn.
SIMON – And Beth and our other podcasters will be here weekly as per usual throughout July. Thank you to all our wonderful guests. Katharine, Ellie, Archbishop Justin, Paul, Frasier and mum, Karina.
KATE – Thank you to the team, Beth Rose and studio manager, Rob Winter. The assistant producer was Niamh Hughes and the producer was Damon Rose. Goodbye.