Transcript: 'I pushed Kelly Fletcher off the stool'

This is a full transcript of 'I pushed Kelly Fletcher off the stool' as first broadcast on 17 December 2018 and presented by Kate Monaghan and Simon Minty

[Jingle: Ouch]

[piano music: Good King Wenceslas]

SIMON - [applause] Love this.

KATE - Love that.

SIMON - Best intro ever.

KATE - Well, hello everybody. This is the Ouch talk show where we do disability all year round, not just at Christmas, and definitely not just on 3rd December, the UN's designated day for disabled people. I'm Kate Monaghan.

SIMON - And I'm Simon Minty.

KATE - So, let's introduce the guests. You've heard him at the top of the show, our absolute favourite blind, autistic savant pianist, Derek Paravacini, is here, supported by his friend and mentor, Adam Ockelford. Hi Derek and Adam.

DEREK - Hello.

ADAM - Hello.

KATE - Derek, now what is your favourite Christmas song?

DEREK - My favourite Christmas song is 'Chestnuts Roasting'.

KATE - We'll come back to you both for a proper chat in a moment.

SIMON - Christian Donlan became a dad and got diagnosed with MS the very same year. That's a lot to get your head round right there. So the gaming journalist wrote a book to try and make sense of it all. Hi, Christian. Do you have a favourite Christmas tune?

CHRISTIAN - Hello. I do. I think it is 'God Rest Ye Merry Gentlemen', just because it's slightly spooky and oddly melancholic and it's nice to have a bit of that in with all the Christmas cheer. A bit of texture.

KATE - Lucy Edwards is here. Hello, Lucy.

LUCY - Hello.

KATE - Now, from a stint on the Ouch team to becoming the first blind face of Covergirl, this self-proclaimed makeup addict has had quite a year. Now, will you tell us a bit about that later in the show, Lucy?

LUCY - I will indeed.

KATE - Great, because I really need some career progression tips if that is from Ouch to Covergirl.

SIMON - We kind of got stuck.

KATE - Yeah. So I'm looking forward to that.

SIMON - Disability employment expert, Kate Nash, is also here to talk about Purple Light Up, which you may have seen in the news recently. Hi there, Kate.

KATE N - Hello.

SIMON - Thank you very much for being here. So please pitch in as we go along, and we're going to be back to talk about all things Purple later on in the show. Kate, it's lovely to have you back. You weren't here last month.

KATE - Thank you. I was not.

SIMON - How come?

KATE - Well, very, very sadly my wife and I had our son who was stillborn last month, and it was quite a shock and it was a very, very sad, hard time. But he was born at the end of October, and his name is Sonny Jude and we had his funeral on Tuesday. We got to say a proper goodbye to him. And so yeah, it's been a pretty tough time, but I think it's not something that we should shy away from, it's something that we should talk about.

And it's kind of well-known that both Holly and I both have disabilities, but we've talked extensively with the doctors about why this might have happened and they think that it's just a really unlucky thing that's happened to us and it's in fact not related to either of our kind of… Well, obviously not mine, because it's not genetically mine, but it's not related to Holly's health conditions or anything, it's just one of those things that happens.

SIMON - So, you have Scout, your daughter.

KATE - We do.

SIMON - And as you say, to talk about it can be good, but how do you explain it to a very young child? I mean, how's Scout been doing?

KATE - Scout's been a remarkable light in our darkness over the last couple of months. She's kept us going, she's been the reason we've got out of bed, but yeah, we've had to talk to her about why she's lost her brother and why he's not going to be here. But we talk about him a lot, we talk about how Sonny is a star in the sky now and she points up to the sky and she looks for Sonny star up there. And she's got a bunny from a memory box that was given to us from a charity via the hospital and she calls him Sonny Bunny and she cuddles him, and it's a really nice way for her to kind of remember him.

And we're doing some things to remember him. This advent we're trying to do random acts of kindness for people and we're giving them a little piece of paper saying we've done this thing, be it buying somebody a coffee or leave change by a parking meter, and we've put a piece of paper in saying, this is in memory of Sonny Jude who should have been with us but is no longer, but we want him to spread a bit of joy, so his joy for you.

SIMON - Does that help for coping? That's a bit more of a light in the darkness again.

KATE - It is, exactly. It's so that his death means something, brings some light to other people. Plus, we went to Disneyland, which is where you find all sorts of joy. The week after it happened we just sort of said, "Oh, you know, let's not stay in this dreary house anymore, let's go to Disney." So that's what we did.

SIMON - I saw that pop up on Instagram and I thought that's let's get out of here and just forget it. So yeah.

KATE - Exactly.

SIMON - I'm really sorry, really sorry to hear it, Kate, but it's lovely having you back here.

KATE - Thank you. Thank you very much.

[music]

SIMON - So back to Derek. You and Adam were on the Christmas talk show many years ago, Derek, but let's remind people of your awesome story. So when did you actually start playing piano?

DEREK - I started playing the piano since I was two.

KATE - How is that possible? Because I have a two year old and there is no chance that she could play the piano. She would bash around on it but would not understand how to do anything. So how did you start?

DEREK - Can you explain how I started, Adam?

ADAM - Yeah, I think there was a fair bit of bashing actually, Derek.

DEREK - A fair bit of bashing.

ADAM - Your nanny got you down an old…

DEREK - Organ.

ADAM - From the loft. And what did you do with it?

DEREK - I bashed the organ and started to play 'Cockles and Mussels', didn't I Adam?

ADAM - Yeah, something like that. So I think, Derek, when you were two, because you couldn't see, and you didn't really understand words very well, you were trying to make sense of the world, weren't you?

DEREK - Make sense of the world. Yes, Adam.

ADAM - You discovered that on this little organ you could copy the sounds that you heard, and so you started copying hymns and songs.

DEREK - Hymns, hymns.

ADAM - All of that, and suddenly the world was a magical place because you could do stuff that people liked.

DEREK - Could do stuff that people liked on the organ. Yes.

KATE - So what kind of age were you when you were able to play something that people would recognise as a piece of music?

DEREK - Age. Was it four… and a half, was it, Adam?

ADAM - Well that's when we met wasn't it, Derek? And you could certainly play stuff that we recognised then.

DEREK - Yes.

ADAM - Although there were a lot of notes in it, because you love playing lots and lots and lots of notes.

DEREK - I love playing lots of notes [plays some notes], yes. Pushing Kelly and started to play 'Don't Cry For Me Argentina' and…

ADAM - Yes, when you were little you didn't want to share your piano at all, did you?

DEREK - No, Adam.

ADAM - So what happened, Derek?

DEREK - I had to push Kelly Fletcher off the stool and started to play 'Don't Cry For Me Argentina', Adam.

ADAM - That's right.

SIMON - So what do you do when you're not playing the piano, Derek?

DEREK - Yeah. Maybe go to the gym. Go on the running machine and the bike machine.

ADAM - Since the last appearance on Ouch, Derek's put on some muscle, so you have to do what he says now. [laughter] You've got a good physique haven't you?

DEREK - I have, Adam. Yay.

SIMON - And is this because you enjoy it or is it about keeping fit and keeping trim as well?

DEREK - I enjoy it, yes. I enjoy keeping fit as well.

KATE - What's it like for you playing with other musicians? Because you said you didn't like to share the piano. Is that still the case? Do you find it difficult playing with other musicians or do you enjoy it?

DEREK - I enjoy it, playing with other musicians, yes.

ADAM - I think the great thing that happened when you were about five or six, Derek, was that suddenly you realised that music was a way of relating to other people wasn't it? Of making friends.

DEREK - Of making friends.

ADAM - And since then, wherever you go in the world you just make new friends. I think that's a great thing.

DEREK - Make new friends. Yes, great thing, Adam, yeah.

KATE - Obviously you are an incredible musician who can just sort of play back stuff that you've heard, and therefore some people have been known to call you the human iPod. What do you think about being called that?

DEREK - I'm not sure what I think of being called the human iPod. Can you remember what it is? Just human isn't it, Adam?

ADAM - Yes, I think you're more human than iPod, Derek. Remember, we talked about that in America didn't we, and I think we said that you're like an iPod but with a creativity chip. It's one of the myths I think about autism, is that autistic people are very mechanical and very good at copying things but not being creative, and I think one of the great things you've done, Derek, is to prove that wrong, because you're immensely creative. It took about ten years, Derek, to teach you to improvise because I'd say…

DEREK - To improvise.

ADAM - I'd say, "Now, improvise, Derek," and you'd say, "What?" So I'd play something and then of course you'd copy that. So I'd say, "No, no, no, you have to improvise." But you suddenly clicked in your teens. Why don't you do something like 'Jingle Bells' with nice double octaves and things?

DEREK - Can do 'Jingle Bells' with double octaves.

ADAM - Yes. Show people how good you are at improvising.

DEREK - Yay, can do that, Adam.

ADAM - Go on then.

[piano music: 'Jingle Bells']

KATE - Wow. That was amazing! [applause]

SIMON - Everyone around the table's just like kind of lost in your music.

KATE - Yeah.

SIMON - Do you ever get tired of people asking requests all the time, Derek? Does it ever get a bit tedious?

DEREK - Not really, no, Simon.

KATE - You enjoy it.

DEREK - I enjoy it, yeah.

KATE - Excellent.

SIMON - Well, we enjoy it. You must be in huge demand. It's an absolute joy to have you here.

DEREK - Thank you.

SIMON - Stay with us, Derek and Adam. Please do chip in whenever you feel like it with words, or even a musical interlude. We'll work on that.

KATE - Now, turning our attention to gaming journalist, Christian Donlan. He became a father and was diagnosed with MS within the same 12 months. That's quite a lot going on there isn't it?

CHRISTIAN - Yeah, it was a lot.

KATE - So he wrote a book about how these two aspects of his life intertwine and he's here to tell us all about it. So, I'm going to ask the very basic question of what is MS?

CHRISTIAN - Oh, okay. [laughs] MS is a disease in which the outputs of the nerve which are called axons, so the bits of the nerve cell, the neuron which takes the signal and moves it somewhere else, it is often covered in this fatty coating that enhances neuro transmission called myelin and - this all sounds very technical, sorry - and in MS what we think happens is the body's immune system which is there to fight off infections and things like that outside sort of infections in the body, it starts to attack the myelin and so signals slow down or get lost.

MS itself, there are variations of it, so I have relapsing remitting which is one of the milder variations where symptoms come and go, sort of wax and wane, though there is still disease progression over time, but there are other kinds such as primary progressive, which tends to affect people who are diagnosed when they're older and that's where there are no periods of remission, it just gets worse. And there's also secondary progressive which relapsing remitting often turns into.

KATE - Right. And which came first, the child or the MS?

CHRISTIAN - The child.

KATE - Okay. And what was that like?

CHRISTIAN - It was extraordinary. And one of the things that has been a challenge… I say a challenge, that puts it in a negative way. MS is an illness which you have to spend a lot of time interpreting, and with Leon, my daughter, being born, I was going through a lot of changes anyway, just because I was 35 and I'm no longer an enormously young person and suddenly I have an enormously young person of my own to look after. So I was sort of exploring all of those things and then also MS was intruding at the same time.

SIMON - And what was it that you sort of thought, okay, something different, something is not ordinary with my body?

CHRISTIAN - So I think I actually had MS a couple of years before I noticed it. I became very clumsy. When I reached for light switches I missed them and whenever I tried to put my key in the door my key does not go in the door. Cash points and all sorts of things like that, I'm a little bit off, my body is not quite where I think it is, but I didn't notice that for a really long time. I'm quite a clueless individual. That has nothing to do with MS, that's just me. But I woke up one morning and my hands were tingling. And MS historically has been a very difficult disease to diagnose, so that has changed over the last few years with MRIs and things like that.

But five seconds after my hands started tingling and I said to my wife, "Oh my gosh, my hands are tingling, I think I might be having a heart attack," which is the kind of jaunty opening gambit I often give her on a Saturday morning, she turned over, without waking up, and she said, "Tingling hands would not be a heart attack, it sounds neurological, it's probably something like multiple sclerosis," and then she went to sleep. So…

KATE - Hold on, is she a doctor?

CHRISTIAN - She was a nurse.

KATE - Okay.

CHRISTIAN - She feels very bad about this story, and I should probably stop telling it. [laughs]

KATE - No, no, that's a reason to keep going with it I reckon.

CHRISTIAN - But obviously she didn't mean it, she would have said it a little more gently than that, but it's always amused me that MS is such a tricky thing to diagnose historically and it took me seven months, which is actually a very short period of time, but she had the answer after five seconds, which isn't bad.

SIMON - Diagnosis can be a relief, it can be thank goodness, and sometimes it's, oh… How did you react? How did you feel?

CHRISTIAN - It really was, and that seems almost wrong to say that. I tell people that and I feel bad about it, but the day I was diagnosed was a good day for me, not because I was delighted to have MS, but because I knew suddenly I had a word for it. And I have friends who have illnesses which are not diagnosed, and it is a particular kind of suffering that they go through, because they know something is wrong but they don't have the thing to focus on. And so your mind goes in all kinds of places and what's wrong with me, what's wrong with me? And also they start to question whether they're being treated adequately by the medical establishment and things like that.

But also the day I was diagnosed, and I promise this is true, I often don't tell people this because it sounds so ridiculous and kind of like a Christmas movie, but my daughter took her first steps on the day I was diagnosed, and I have a video of her doing that, lurching across the room with this look of potency in her face, this sense of like this is going to work, oh my God, this is working. And she came towards me and I just said to my wife, "This has been a good day." And that probably sounds very strange, but it's true.

SIMON - Did you smile at the time?

CHRISTIAN - I was really happy, and I feel like one of the things I didn't realise was happening was I was learning to doubt my own cognitive processes, at the same time as my daughter's were really taking off. And she was learning to speak around the same time as I was having real trouble finding the right words and I'd use the wrong words. I feel so nervous whenever I have to come and talk on the radio or something because I…

SIMON - You're doing all right.

CHRISTIAN - Because my brain just hands me the wrong words occasionally and it hands me the most embarrassing word imaginable. So I'll be sort of reaching round for something, it goes, oh you should say this now, and, you know, the most awful, terrible word comes out.

KATE - I kind of want that to happen now.

SIMON - Yeah, so do I. Yeah, welcome to my show.

CHRISTIAN - But also, I think this is quite well documented with MS, you have a lot of word retrieval, word finding problems, and I drive my wife to distraction quite a lot because I cannot say the simplest often nouns. I was looking for a calendar to write something down and I called it an alphabet of months.

KATE - Oh, I like that.

CHRISTIAN - Because you have to kind of come up with a workaround. And funnily enough, that was one of those moments were I was like, is this MS or is this just being almost 40 and having a child for the first time? But I wrote an article about it and someone online who has MS as well said that they asked their husband for a journal of days of the year, or something like that. So these workarounds are quite common, and actually they do have a sort of pleasant poetry to them sometimes. Sometimes they're ridiculous.

KATE - How have you found it, parenting with a disability? Like when the MS is flaring. Because I have a chronic condition and parenting Scout on those days when I feel terrible is such hard work. Is it the same for you?

CHRISTIAN - It is. I worry about the amount of YouTube… I think I'd worry about the amount of YouTube my daughter's watching anyway, but there are times when I just cannot, I don't have the energy.

KATE - Absolutely.

CHRISTIAN - And I hand her the tablet, and I hate to do it, but equally there are times when I just cannot be more a part of the day. But actually, we haven't said MS to her, but she knows that there is something different about me, and I think actually she's very thoughtful about that sort of thing. And actually now she's slightly over the YouTube and into drawing and so you can set her drawing and I feel a lot better about that.

SIMON - But I always think there's a kind of a part of the maturity about having a new condition, a new impairment, and knowing when you have to say I have to acknowledge it now, rather than overdoing it and getting yourself in more trouble.

CHRISTIAN - That has taken me such a long time. That specific thing has taken me for ages, and what I have only recently started to realise is if I overdo it today I will not be able to do very much tomorrow. And that is so different to the way of thinking I had before, and this is where my wife is very practical, and she will say, "Don't do anything else," which is quite nice, but she says, "you have to stop," and she's not being sort of like you have to stop, go and rest because you're so lovely, she's like you have to stop because I need you tomorrow.

SIMON - This is spoon stuff isn't it?

KATE - That's exactly what Holly says to me, she'll say, "Enough, because otherwise you'll be useless tomorrow and I don't want to cope with that." [laughs] So it's sort of nice but also sort of like well, you know, stop having fun because otherwise you won't be able to help with dinner tomorrow night.

CHRISTIAN - This time you started a new relationship with your new-rologist - see what I did there.

CHRISTIAN - Oh, I like it.

KATE - Hello? What kind of relationship are you talking about?

SIMON - Kate, who's here, Kate and I shared the same hip surgeon for quite some time.

CHRISTIAN - Oh wow.

SIMON - How is it with your neurologist?

CHRISTIAN - I love him. I'm probably not allowed to say that.

SIMON - No, you are. I love my hip surgeon.

CHRISTIAN - I was not prepared. Obviously I should point out that most of this relationship takes place in my own mind, but I became intensely fascinated with him. I'm very grateful to him and there's something about that relationship, I wasn't prepared for how emotional that was, and when I was in - this is a story that I hope he doesn't hear - when I was in hospital having treatment for MS and I was in my bed and I'd been in my bed all week and everything was a mess and there were sort of books all over the place and the sheets were all over the place, and when my neurologist came in I started smoothing my bed [laughs] and sort of tidying the books away.

And my dad was there afterwards and he said, "I think I didn't realise this, this is a relationship where you love this man." And I'm so sorry if you're listening to this, doctor, but I think there is truth to that. These people, they come into your life when you're so confused and lost and they give you the guidance you need, they give you a sense of… everyone I met in the NHS just said to me, well the first time I met them and when I left they all would shake my hand and say, "You will not be alone in this."

SIMON - Kate, you're nodding. Do you love your hip surgeon?

KATE N - I do, yeah. We're having a bit of a love in here. And it's true, I think what happens is sometimes disability and impairment has the capacity to derail us and we have to hang on to those individuals who are going to bring different skills to us. Sometimes they are surgeons or engineers, and they work their magic and we're able to live life. It might be a little bit more awkward or difficult but they liberate us. And so yeah, I totally understand that. I love my surgeon too.

SIMON - Lucy, your blindness was quite…

LUCY - Saying I love my surgeon. [Laughter] I only have light perception because of him, he's amazing. Yeah, I think it's so liberating to have someone on your side. I mean my condition's called Incontinentia Pigmentia which is really, really rare, and I was 17 when I lost my eyesight and I was in a clinic with all little babies because it was so intricate.

My eye operation at the time, and I was the last one on his list, and he came in on a Saturday in his jeans to check my eyesight once I'd slept on my front for 24 hours and then I had to sleep on my front for like two more months because the oil in my eye had to put my retina back on. Anyway, very complicated, but he's amazing.

SIMON - Is this where you started doing your makeup a little bit more when he was coming in?

LUCY - I did, I did. [laughter]

CHRISTIAN - I should start doing that when my neurologist comes in, I'll just put on a bit of blusher and everything.

SIMON - Derek?

DEREK - Yeah?

SIMON - Do you have a medical specialist who you like and admire and respect? Is that in your life?

DEREK - I do have a medical specialist, yes.

SIMON - And do you like them? Do you respect them?

DEREK - I do respect them. Is that right, Adam?

ADAM - Yeah, it's interesting because, you know, you were born very premature, Derek.

DEREK - Premature.

ADAM - And you're 39 now aren't you?

DEREK - I'm 39, yes.

ADAM - You were doing a concert about two or three years ago and someone came out of the audience and said, "I was the doctor that put you in the incubator, Derek, and actually made that call."

KATE - Wow.

ADAM - And at the time she was a junior doctor and this was her first sort of life and death decision she'd made. And then she'd gone to work abroad, but then she came back to England, saw your name on a concert poster and thought I've just got to catch up with Derek, 40 years later.

DEREK - 40 years later.

ADAM - So she quite literally, that's quite literally why you're here, Derek, is because a doctor made the right decision.

DEREK - Yes, that's right.

KATE - Incredible.

SIMON - 25 weeks early, as I understand it.

KATE - No, 25 weeks gestation.

SIMON - So I'm not going to say any more things about pregnancy because I haven't got a clue. Apologies, Derek.

DEREK - And I'm going to Nashville on an aeroplane soon.

KATE - Oh, I'm jealous, I'd like to go to Nashville.

SIMON - Funky music.

DEREK - Yes.

SIMON - Tell us about your book, Christian, what's it called?

CHRISTIAN - It's called 'The Unmapped Mind' and it was really an attempt to understand… Well, it was really rather selfish of me, I didn't come to terms with everything and come to a set of polite conclusions about what had happened and then write that up like a sensible person would have, I really wanted to capture diagnosis in sort of the chaos of diagnosis when everything is swirling around and you don't really know who you are and you don't really know what's going on and you don't know what the future holds. I wanted to capture that interesting, difficult, unpredictable time, and I wanted to write quite an internal, personal book. I wanted to write a book that was very honest, even if the honesty, it didn't speak well of me.

KATE - Is it a festive, cheery book for Christmas presents would you say?

CHRISTIAN - Oh yes, definitely.

KATE - Okay, good.

CHRISTIAN - No, I've been told it's funny, which is I suppose good, I didn't mean it to be funny, but I think it has some probably funny moments in it. I think it's a fairly upbeat thing. One thing that has remained intact and which has helped me a lot is my sense of curiosity about things, and MS is complicated and difficult and extremely unpleasant for a lot of people who have it, but it is also, undeniably there is a kernel of something fascinating there. And at times it felt wrong to be fascinated by it, but over time I am just very interested in neurology as a result of it.

KATE - Thank you, Christian, that was very interesting. And please stay with us and feel free to chip in, just like everybody else around the table. A networkologist. Now, that's what our next guest gets described as for her work helping to set up disability networks in companies all over the world. Kate Nash OBE, not Kate Nash the musician, as I was confused with this morning, please tell me, what is networkology, and what are disability staff networks?

KATE N - Yes, well it's certainly not singing, that's for sure, Kate. Well, I didn't have a word to describe what I did, so I kind of invented something for myself. And I suppose really, I mean we talk about networkology as the art and the science of setting up employee networks within the public sector and the private sector, whether that's police forces or NHS trusts or large multinationals. And it's really about, I suppose individuals coming together and doing two things.

One, I suppose supporting each other. You know, sometimes when we acquire a disability for the first time it can completely derail us, so learning tips about how to ask for a workplace adjustment, how to navigate the workplace, how to feel good and confident and comfortable in your skin at work.

So that's really what they do. But equally they're often great vehicles for supporting an organisation to do differently and better when it comes to policies and practices and procedures. So networkology is really about helping individuals to create a buzz and an engagement pace within business.

KATE - If somebody wanted to set up their own network in their workplace, your first steps, what would it be?

SIMON - Me and Kate - Kate host - are going to set one up afterwards.

KATE - We are, yeah.

KATE N - Excellent, marvellous. Well the first thing would be just do it. Best tips would be start to talk about the idea, talk to senior business leaders, talk to other disabled people, maybe talk to the union and just start to think about what are the things you want to achieve. Sometimes it's simply about peer group support, you know, it's simply about how do I go for that promotion or how do I position myself as a really successful individual? Or it might be that an individual who may not have come out I suppose at work and they're really struggling but they're not able to ask for the workplace adjustment that they might need, so just talking through with others how I can position it with my line manager is a really good idea.

SIMON - You're reminding me of when I had my proper job and worked in an office and I wouldn't talk about my disability because I just wanted to be the same as everybody else, but there little moments of isolation. It's about like you're saying, Christian, that you're doing this on your own.

KATE N - Yes.

SIMON - Do you think decades later there is a confidence of staff who have disabilities and impairments? Is this really growing? People are more comfortable? Is there a different atmosphere in the workplace?

KATE N - Yes, I think there is, Simon. We're seeing a huge excitement between and across employee networks, and lots and lots of different types of organisations. And they love each other's company, they like to look across to see what other organisations are doing. And I think it's of no coincidence, if you look at say, the legislation, we have of course the Equalities Act, but for us as disabled people the Disability Discrimination Act in '95 was 20 years after the Race Relations Act or the Sex Discrimination Act of the mid '70s, and yet that's when we started to see the establishment of what's called BAME networks, Black and Minority Ethnic Networks, or the gender networks, and they are really growing like Topsy.

They're often better invested, they often have the voice of senior business leaders who act as champions and allies, and they really are supporting their business to do differently and better when it comes to diversity. But it took us a very long time to get our act together. And now we're just seeing them grow. We're seeing them take great strides in how they are improving business performance. And more importantly, they're having some of the discussions about what we need to do as individuals to lean into our career and be bold and brave and get on with life.

SIMON - Lucy, you're nodding, just in agreement?

LUCY - Yes, definitely. I'm really interested because I've never heard of networks or networkology before so I'm really interested.

SIMON - You can join the network that Kate and I are setting up if you want to, Lucy. [laughter]

KATE - Yeah, for people who don't have a proper job, you can join our own nil network.

LUCY - Sounds good.

KATE - Now, sort of in a bit of a departure, you've become involved in something called Purple Light Up. Can you just tell me a bit about what that is?

KATE N - Yes. So Purple Light Up, it came really from an idea from the disabled employees that we were working with within the networks, and if we look out there in the world when it comes to disability, you know, we all know that we've lived through some very difficult times, the last ten years or so, in what has felt like quite a punitive atmosphere around welfare reform, and some of the austerity measures have not been overly easy for us as disabled people.

And often the debate around disability, it can be quite negative, it can be quite loaded around deficit. It's often about not enough disabled people in work, it's about the missing million that need to go into work. And while it's entirely proper that organisations look really long and hard at their recruitment policies and see if they can do a better job of recruiting people who are further away from the labour market it's equally important for us I think as disabled people to be out and loud and proud about the contribution that we make. Not just in terms of the economy, and that's important, but in civil society.

KATE - So, how are you doing that?

KATE N - Well, as I say, so we noticed this, we thought there was a case to create or to put an idea out there into the world, so Purple Light Up was this idea. We noticed that lots of our members do something around 3rd December to mark the United Nations International Day of Persons with Disabilities, but there was no real hook for the networks. So the idea was for our networks to do something to light up purple. And we don't know why purple has started to become…

SIMON - That was the million dollar question, do you know where the purple comes from?

KATE N - We don't know. We've done our research, and I don't know if your own listeners can help us with this, but what I do know, we had noticed, so even before Purple Space had set up about three, four, five years ago, the word purple had started to become synonymous with disability. And so it kind of predates Purple Space, although we are one of the organisations what have made it more famous.

So the idea was to use the colour purple to do something to go purple, whether it's a building, or whether it's something simple, low cost, wear a purple jumper or a pair of earrings or some lipstick or have a purple bake off or whatever it was, and to do something to say we're celebrating our achievements and our economic contribution. So we kind of did it in a little way last year.

SIMON - Is it a different form of disability pride? Is that what I'm hearing?

KATE N - I think so, I think so, Simon. You know, the pride movement is just fantastic. What our LGBT+ colleagues have done is to be applauded, the way in which they've built community and unity through the rainbow flag. And of course that originated I think in San Francisco late '70s. I think the LGBT+ community did a better job in involving individuals from different parts of their movement to come up with the rainbow flag and I don't think as disabled people we've done a particularly good job of one, capitalising on one of the days that we have within the calendar, in this case 3rd December. There are two colours that are associated with that day, purple and turquoise.

SIMON - Yes, the turquoise yellow. I read some of that on Twitter, and that seems to be from a decade or two ago, but it was one of the Disability Rights colours. Then I was thinking if you mix turquoise and yellow does that make purple? Is that a coincidence?

KATE - I don't think it does.

SIMON - Okay.

KATE N - I don't know. We could have a go later with some paint. [laughter]

KATE - So who lit up then? Which buildings?

KATE N - Oh, we had involvement from, not just UK, but all over the world. So in terms of buildings we had PWC in London, Embankment, just threw out purple across the river.

SIMON - This is the professional accountancy company?

KATE N - Massive, professional services firm. We had also support from KPMG, EY, the Bank of England, Metropolitan Police, but then also the CN Tower in Canada which I thought was incredible.

SIMON - That's quite a coup.

KATE N - Yeah. Against 31 government…

KATE - I guess my question is, first of all do people looking at it understand why they've gone purple, or does it just look like something for Christmas because we are in December? Do people go, oh purple, it's disability, for a start, and secondly, is it not just a bit of a PR thing for the companies that are getting involved? They can just say, oh look, we've turned purple and we support disabled people, without actually having to do anything culturally within the company to help disabled people?

SIMON - Yes, because there are people who are employed as well, but yeah, what are their processes, yes.

KATE N - I think there's a danger of that, absolutely, I think it would be wrong to suggest that there is not that as a danger. I think what I would say is we quite carefully choreographed the message that sat behind the purpose of the movement. So if you look on our website at the Purple Light Up pages we put together a really good case about why it is that we're hearing from disabled people who want to celebrate their worth. And one of the great things I think about the pride movement is that it was an opportunity for others, champions, our loved ones, our allies, to get behind that movement. And we haven't really done that I don't think in a big way within the disability movement.

So the short answer, Kate, is that yes, there is a danger that some people will do that as a gizmo or a gimmick but the reality is, and as we looked across, I mean there were 17,000 tweets and the engagement was significant. And for me what I enjoyed was the simple tweets from an individual disabled person or a mum who's got a two year old disabled son who just says, you know, this is fantastic, it gives me hope for my son. Or a police officer who's for the first time chosen now to go back and to share information about maybe their own MS and ask for adjustments.

KATE - But do people really understand what they're looking at when their building goes purple? I mean, anyone around the table, did anyone know that this was a day on 3rd December and did everyone understand why we were going purple?

LUCY - Yeah, I think it's massive on social media, definitely. It's massive on Twitter.

KATE - Christian?

CHRISTIAN - I don't know very much, so I'm not a good example.

KATE - Well no, you're quite a good example because if you're not involved that deeply in the disability community and it didn't reach you maybe that's where Kate's next steps are going to be.

LUCY - And there was obviously Purple Tuesday wasn't there for the retail companies? So I think everyone is trying to jump on board with the colour purple. It's definitely rising. I think we should have purple pride.

SIMON - 'The Color Purple' was a film with Whoopi Goldberg in the '80s which was quite a dark film.

KATE - I was going to say, I'm not sure we want to be associated.

SIMON - No, it confuses me, I always think whenever anyone says the colour purple. Sorry, Christian, you were answering.

CHRISTIAN - No, I wasn't. I'm not on social media so a lot of these things do pass me by.

SIMON - But actually you exist here in real life, that's amazing. [laughter]

CHRISTIAN - Well, you know. Touch and go.

KATE N - Do we have a way to go? Hell yes, absolutely. Do I worry? I'm not a natural worrier. I think the world changes as it should. We're a teeny, teeny team and we've been able to deliver a massive output, so Q1 of next year, quarter one of next year, we want to do an impact review and we're really, really keen to hear feedback, because then that helps us to learn and to see what else we need to do to involve the disabled persons community as well as our allies and really mine this.

KATE - Do you know what I really want to hear?

SIMON - More business talk.

KATE - No.

SIMON - I love the business talk from Kate. Q1, come on!

KATE - No, that always scares me a little bit. No, all I've been thinking about, I mean obviously I've been thinking about the importance of what we've chatted about, but since hearing that Kate Nash was going to be on the podcast all I've been hearing in my head is a bit of Kate Nash music. And I'm just wondering whether Derek could play us some Kate Nash, 'Foundations'? Just a quick five or ten seconds of that, Derek?

DEREK - I could do that, yes.

[piano music: 'Foundations']

KATE - I love it! Oh, Derek. What a man. I love it. I feel like I just need him to… I just want you to follow me round wherever I go, Derek, and then every time I need a little musical interlude…

SIMON - Yes, so you do enjoy this, Derek, this is not just for…?

DEREK - I do enjoy this, yeah.

SIMON - We're loving it.

ADAM - Every network should have a Derek.

SIMON - Join our network, Derek. Oh, I'm loving it. Thank you so much, Kate. If someone wants to find out more about what you're doing, where do we go?

KATE N - Drop into our website. So that's www.purplespace.org

SIMON - Thank you very much.

KATE - Now for something completely different I'd say. YouTube star, Lucy Edwards, used to work for Ouch and has just become the first blind face of Covergirl. A pretty natural progression I'd say there, Lucy. What do you think?

LUCY - Well yeah, I mean a hobby became something, so I do a bit of freelance reporting as well, so I have all of my eggs in different baskets. I'm liking it.

KATE - Always clever. So how did you get from Ouch to Covergirl? And what's it like to work for such an eminent brand… as Ouch? [laughter]

LUCY - Yes, so I always did YouTube primarily on the side really. I've done YouTube videos for ages and I had a video called 'Blind Girl Does Her Own Makeup' that went viral a few years ago now.

KATE - Yes, it's nearly at a million hits isn't it?

LUCY - It is, and I really knew that that was the point where I wanted to go into media and I'm trying to navigate the space around me and that's how I sort of found myself at the BBC and loving journalism and reporting, and the foundation in that is just so valuable. And then it happened to be that two opportunities came at once and Covergirl approached me while I was working at Ouch and yeah, it just went from there. I do videos online about beauty blogging and I think that the space isn't ideal for blind people online, I think that's why I did do 'Blind Girl Does Her Own Makeup' but it's getting better and I really love working with Covergirl to try and promote braille on packaging and all sorts of stuff.

KATE - We've got a clip of one of your videos actually, Lucy. Shall we take a listen?

LUCY - Go for it.

DEREK - Yeah.

[clip] From the same palette now I'm going in with a grey matte called Ignite, right in my crease with a pencil brush. I've really been loving pencil brushes at the moment, it's a blind girl's solution to not getting fall out, just stamping it on the crease and then going in with a fluffy shader after. The solution to everything. Again, on that pencil brush, going in with the colour Jet which is a matte black, just on my outer V, stamping that in, just using a fluffy shader, dipping into Ignite…

SIMON - So I've got to…

KATE - Simon, I can hear, you were right into that weren't you?

SIMON - I don't want to be critical, Lucy, but a couple of things you did there were basic weren't they? [laughter] No, I've no idea, I have no idea. Were you exploring your becoming blind but making videos at the same time? I mean that's quite exposing isn't it?

LUCY - Yes, definitely. I think it was a way of accepting my blindness, because I couldn't look in the mirror. I have my lovely sister who has 20/20 vision so I'm very lucky to have her and she loves makeup too. It was a way of bonding with her and it was a way of really owning that I can't see in the mirror anymore. Yeah, definitely a coping mechanism for me.

SIMON - Goodness.

KATE - And obviously with all social media you get positive and you get negative. What kind of comments do you get on your YouTube videos?

LUCY - Well, I have a lovely community of lots and lots of different people, but I think on my 'Blind Girl Does Her Own Makeup' video people do try to disapprove of me being blind, so there are comments like, "You can see that brush," and I'm like, okay mate. It's kind of, I don't know, I just laugh at them, I mean they can see a video and it's a snapshot into my life but it's not all of it. and I think these days you are conscious of what you do put online because of the trolling but I guess, yeah.

SIMON - You've been in the States recently, you've just come back from New York this week in fact.

LUCY - I have.

KATE - Oh, such a jet setter. Seriously.

SIMON - Tell us a little bit more about your work with Covergirl, which I learnt, is it part of Maybelline? This is the makeup brand.

LUCY - Yes, so Covergirl is in the States, we don't actually have it over here in the UK, but we're doing wider PR on it. And obviously they're very, very out there in what they do, they have people with vitiligo, models, and all sorts of disabilities that they're really trying to include everyone and everybody in their brand messaging. And I think that was primarily what I went out to do, it was a Times Square opening of their shop, the first ever drug store brand in the USA to have their own shop. It was absolutely amazing. I went with my sister. It was a bit of a pinch me moment.

SIMON - Did you cut a ribbon or something?

LUCY - No, well we just all went in as like a PR event, there were lots of us, and my primary work with Covergirl is to really have diversity within their brand and show what blind girls can do.

SIMON - And just…

KATE - So what…? No. Wait, Simon, I need to get to the important questions. What freebies did you get there and do you get on a regular basis?

LUCY - Yes, so about every month or so they send me like a big PR package of all of their new launches and different stuff and obviously I do different videos for them. So it's really testing out what is blind girl friendly and what isn't out of their range. I tell them how accessible their website is, how they can widen their reach, their packaging.

KATE - And with the things that you don't like in there? What do you do with those? Just out of interest.

LUCY - I give them to friends and family.

KATE - Oh, really?

LUCY - I'm planning to do a giveaway as well, but, you know…

KATE - Oh, interesting.

SIMON - eBay, yes.

LUCY - No, not eBay.

KATE - Did you bring anything with you today?

LUCY - Well, I've got a Covergirl lipstick in my handbag.

KATE - Oh, hello.

SIMON - As we are BBC and tough questioners, I mean talking to Kate about Purple, do you ever fear this could be tokenistic, Lucy?

LUCY - I mean, I'm very in the now. I think at the start, leaving Ouch and going into freelance work it was very daunting, because they're just both such great opportunities and I felt like the luckiest girl in the world. And obviously going into something like that that's so unknown, I was so scared, really scared, but then I thought I'm 22, I've got a supportive fiancée and a loving family and I just think if I can't do it now I really do want to change the landscape of beauty. It's very visual and I think if I can make a difference and really strive for that then I've just got to do it.

SIMON - Actually it's a very good point, because if you didn't and in two years you go, I missed a great opportunity then, absolutely.

LUCY - Exactly.

KATE - Do you care if it's tokenistic?

LUCY - Not really.

KATE - No, I think that's fair.

SIMON - You're getting free stuff, you're getting paid to go to New York. As disabled people we're allowed to be exploited like everybody else. That's fine, that's part of equality.

KATE - And we're allowed to exploit the opportunities we are given as well, so…

SIMON - You're learning, Christian, we're teaching you a lot of things here.

CHRISTIAN - Okay, I'm taking notes.

SIMON - You've already written a book about it, so what are we worried about?

KATE - Yeah, exactly.

LUCY - Exactly.

KATE - There was an article recently by a visually impaired woman who was told that she's too good looking to be disabled, something that I obviously find myself. I get told a lot. Could you identify with that? Well, do you identify with it?

LUCY - Definitely. I think a lot of people look at me and they're like, you're not blind, try and disprove it on videos and then also sort of are very surprised. Also, I am a bit worried most of the time. I dye my hair quite bright red and sometimes I get weird… I attract weirdos. I do get, I'm like oh should I be wary…? I shouldn't let weirdos dictate what I wear, but I do, yeah, I do get worried about me being blind and on my own.

KATE - Yeah, I think all disabled people actually do attract weirdos.

SIMON - Tell me about it.

KATE - It just feels like it comes with the territory.

SIMON - The point of that though is something quite deep and insidious, is the idea that if you have a disability you can't be beautiful or attractive, and that's the bit that I really don't get. It goes back to your bit, Kate, that suddenly you're not sexually appealing and something's changed because of the disability bit, and that bugs me.

LUCY - Yeah, definitely. I think there's a lot of work out there to… Maybe in the media we're seen as this inspirational entity and really we should just be…

KATE - You are quite inspirational though, Lucy. I think that's the problem, that you actually are quite inspirational because you are a star now.

LUCY - Oh, thanks.

KATE - And that is something that so many young people aspire to be.

LUCY - Yeah, definitely.

SIMON - But I am exhausted. I hear the word disability and it's followed by inspirational so much now, more than even the 1980s and '90s.

KATE - Oh gosh, yes.

SIMON - And then you're like, inspiring to do what?

KATE - Well, but that's what Lucy is, like she's actually somebody you can say is…

SIMON - Paving a way.

KATE - Yes, inspirational, because she has achieved something that is aspirational.

LUCY - Changing the landscape.

SIMON - Aspirational. Happy with that.

KATE - You're not inspirational just because you've walked down the street on your own.

LUCY - Yeah, I think that's when I'm happy to be called that, but if I'm just like hi, I woke up like this, you know.

SIMON - What about perspirational?

LUCY - Yeah. [laughs]

KATE - That's what people call you.

SIMON - Oh. Hashtag, cute and disabled is me.

KATE - Now, we've got a little question/plea from our blind producer, Emma. What are your top makeup tips for blind people?

LUCY - Yeah, so I do a lot on my channel to promote a lot of different brushes and sponges, but definitely if you're going to apply your foundation the most seamless way is with a sponge running under water. You wouldn't think it, water and foundation, but it is the best. And to do your eye shadow definitely invest in a really tiny brush. Like I would say the tiniest thing that you'd probably find and really carve out and press rather than swiping because you just get so much fall out on your face.

And so after you've pressed in with the pencil brush on your eye you can go in then with the fluffy brush then and then it looks like you've really blended. Also, maybe something for the lips, go with a lot of lip gloss. If you're new to lipstick and everything because it's really easy to get the outline of your lips that way. And then obviously in trend at the moment, it's lovely to just put a little bit of gold shimmer on your cupid's bow.

KATE - What's a cupid's bow?

LUCY - It's just the top bit of your lip.

KATE - The bit at the bottom where your…

LUCY - It's like the top bit of your lip where it sort of goes…

KATE - Where it meets the channel.

LUCY - Yeah… How would I describe that?

SIMON - Yeah, you've described it…

CHRISTIAN - Isn't it called the philtrum, or have I got that wrong?

KATE - I think you're right actually, Christian, I think it is called the philtrum.

CHRISTIAN - Is it?

KATE - Yeah, good knowledge.

CHRISTIAN - Phew.

SIMON - Olga is at your feet, Lucy. This is…

KATE - You may have heard her snoring away a little bit during the podcast.

SIMON - I thought that was your tummy rumbling. That's interesting. Olga is at your feet, that is your guide dog, and you've written an article recently, because someone said, you're a vegan…

LUCY - I am.

SIMON - But how can you be a vegan? Is that incompatible with having a guide dog as well?

KATE - What was their problem with it?

LUCY - It made me really angry.

SIMON - I thought you wrote a brilliant article, and I loved your response.

LUCY - Thank you.

KATE - So what was this person's argument then?

LUCY - So I'm sort of like a more laid back, loving life on the veg sort of vegan, just laying low.

SIMON - Hashtag.

LUCY - Exactly. And so this woman was basically saying that it's really cruel and I haven't asked her to be my guide and all this different stuff. And I was just like you have no idea about my life. She was basically saying get another human to do it, there's seven billion humans on the planet, why don't you just get a grip and ask someone to guide you?

KATE - Have a guide human rather than a guide dog.

LUCY - Basically. And my response to that is that she doesn't have my life and I don't think she really has the… I don't think she has the right to necessarily tell me what I can and can't do with my guide dog. And also there's so much training behind what Guide Dogs for the Blind do and how they treat their dogs. It's just so crazy to think that someone is out there saying that they're abused or they're not cared for properly.

KATE - And Olga's pretty happy and I doubt she'd be doing what she's doing if she wasn't enjoying it.

LUCY - Well exactly. She actively puts the harness on her head and she has loads of free runs. I really care for her welfare and she wouldn't be doing it, she'd be running away from me. That was my sort of argument.

SIMON - And it was about consent wasn't it, but you said a smart line saying we're kind of missing the point, there is a lot of difficulty with animals being mistreated, this kind of is the wrong target.

LUCY - We are missing the point, and I mean this is a separate topic, I mean the veganism is a massive movement and I joined it about a year ago, maybe as a way of coping with my blindness really. I'm very extreme, I run marathons, I'm vegan and I think that's one of my coping mechanisms. But I think everyone in the mainstream media is missing the point with it, they are putting these crazy vegans on the telly saying guide dogs are very abused and Piers Morgan is like, you know, counter arguing with all these different things, and actually there is a problem with animal welfare but it's not the welfare of my guide dog.

KATE - Well, I think that's it for the December talk show. Simon and I will be back in mid-January.

SIMON - A big thank you to all of our guests. Christian Donlan, Kate Nash OBE, Lucy Edwards, and the one and only, Derek Paravacini.

KATE - The team were Niamh Hughes, Beth Rose and producer, Emma Tracey. The studio manager was Robbie Hayward. Now, let's finish the show with some more Christmas music from Derek. Something old.

DEREK - Something old.

ADAM - 'Ding Dong Merrily On High'.

DEREK - I can do 'Ding Dong Merrily On High'.

KATE - Perfect.

[piano music: 'Ding Dong Merrily On High']

DEREK - [applause] Thank you!

SIMON - Ho, ho, ho.