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 This is a transcript of I was expecting mediocrity ... you blew me away as first broadcast on 19 December 2019 and presented by Kate Monaghan and Simon Minty.KATE - [Christmas music] Coming up…MAYSOON - Visibly disabled roles need to be played by actually disabled actors, because it's cartoonish, offensive and inauthentic for nondisabled actors to play disabled on the TV.TILLY - [gasps] Oh!TOM - Hello, Tilly.KATE - Hi, Tom.TOM - How are you?TILLY - Oh my goodness. Hi Tom. [laughs]TOM - Lovely song, thanks. TILLY - Thank you. I'm so overwhelmed, I'm going to cry.MAYSOON - It's okay for disabled people to be miserable about having a disability, it really is. I'm disabled and proud, but at the same time, yeah, no I don't want to wake up and shake every day. That's just ridiculous.  [Jingle: Ouch]KATE - It's the Christmas show. So who's feeling Christmassy this year? Simon, you and I have matching Christmas t-shirts on.SIMON - We do. Santa's hat with a little white moustache and the words, 'believe'. KATE - Do you believe in Santa?SIMON - I like the idea of it. We need some sort of cheer at the moment don't we?KATE - Hmmhmm, we do. SIMON - Are you Christmassy?KATE - I am Christmassy, yes. I'm determined to be very Christmassy this year.SIMON - The decorations are up?KATE - Yeah, of course. The decorations went up on 1st December, of course. The tree's up, everything's ready.SIMON - So I don't have children and I'm still debating whether to put my tree up.KATE - Ah, of course you have to.SIMON - But you have a child, so is that essential, 1st December?KATE - Yes, totally. Although she then immediately thought it was Christmas Eve and she kept saying, "I can't wait for Christmas tomorrow." And we were like, "Oh… you've got quite a long time to wait." Then we made the mistake of saying, "You just wait until you've opened all the doors on your advent calendar and then it will be Christmas," [laughs] and then of course she went into opening all the doors in her advent calendar in one go…SIMON - In one go.KATE - And went, is it Christmas now? And we were like, well, we've failed there. Anyway, that's a lesson that we're going to learn for next year.SIMON - Yeah, I like that she took it literally though, that's good.  We are Ouch, we are the disability show on the Â鶹ԼÅÄ.KATE - Yes, I'm Kate Monaghan and this is Simon Minty.SIMON - It is, thank you for that. We have got guests on the show. They're great guests today. Opposite me is Tilly Moses, she's a folk singer from Liverpool. And you'll be playing us a song a bit later. What's it called?TILLY - It's called 'The Social Model'. SIMON - And therein lies a tale. More politicised listeners will know what that is all about, but if you could sum it up in 20 seconds Tilly, how would you sum that up?TILLY - Oh, the social model is like a way of viewing disability that says that there's nothing inherently wrong with being disabled, and a lot of us wouldn't change anything about our bodies, but that there's something wrong in the environment that we're in and the way that we're treated by society and others around us.SIMON - That's impressive, to get that nailed down. And I think you're an interesting… Well, we'll be talking to you a lot more in depth about that later. But do please join in as we speak to our first guest. KATE - Well, down the line from our bureau in New York, New York, so good they named it twice, it's comedian and disability advocate, Maysoon Zayid. Hello, Maysoon. MAYSOON - Hello, how are you doing?KATE - I'm good. How are you?MAYSOON - I'm good. I'm a Christmas loving Muslim. I was enjoying listening to your tale of Christmas. The only thing I hate about Christmas is it's too much pressure on non Christmas kids to keep up the Santa lie. So can we just be done with it?SIMON - Oh…MAYSOON - It doesn't exist, but the kids let it.KATE - What do you mean, non Christmas kids keep up the Santa?MAYSOON - Non Christmas kids have to lie to Christmas kids about the Santa guy who does not exist. It's too much pressure to put on children.SIMON - [gasps] Believe.MAYSOON - No, there's nothing to believe in, it's delusional. KATE - I believe. MAYSOON - Nobody's breaking into your house, Mommy and Daddy bought the gifts. And stop making kids lie for you. [laughter] We can all love Christmas and remove the fib. It's okay. KATE - Oh, now I feel… I don't know what to do now about being a parent, I'm suddenly all conflicted. SIMON - It's tough over here.MAYSOON - Well, I'll tell you what you should do, go tell your kid there's no Santa and stop making their friends lie to them. Like, it's not a good way to parent. I'm not judging you, I'm just telling you.KATE - No, I feel like you are judging me. [laughter]SIMON - Now, shall we move on to the…?MAYSOON - Well, I don't know, you're sitting here telling me that you lie to your children and tell them to believe in things that will never happen, like equality and justice for disabled people, and I'm saying be straight, there's no Santa.SIMON - Where are you on religion, Maysoon?KATE - Well, I believe in Santa more than I believe in equality and justice for disabled people, so, you know, there we go.SIMON - Maysoon, where are you on religion then? Tell us about religion.MAYSOON - I'm Muslim. So I'm Muslim, but, but my family is from where Jesus was born, which is Palestine. So I love Christmas because it's like our one big holiday in Palestine. That's our one claim to fame, is the Jesus thing, and Muslims believe in Jesus. The Virgin Mary is the most mentioned woman in the Qur'an. I love gifts. I just don't like the lie.SIMON - Before we fly on, Kate, you did say, "I believe in Santa more than equality and rights for disabled people," on the Â鶹ԼÅÄ Ouch show.KATE - No, I believe in them, I think the likelihood of us getting them, there's more likely to be a Santa than there is in this world that we live in.SIMON - I've got you now, that's very cleverMAYSOON - And there she and I are on the same page.KATE - Exactly.MAYSOON - So one of my books, speaking of pages. KATE - Nicely segued there, Maysoon. But you just brought out a book last month didn't you? What's that called?MAYSOON - It's called 'Find Another Dream'. If your dream turns into a nightmare find another dream. It's never going to come true, move on. It's a very positive book about hope. And Santa. [laughs] And the Easter Bunny and the Tooth Fairy. KATE - Amazing. Now you have just written…MAYSOON - In a thruple.KATE - I'm not sure we can get away with thruple on Â鶹ԼÅÄ Ouch, so I am just going to move on swiftly from believing in that as well. But you have just received a Her Abilities award in the arts and sports category. Tell me about, what is this award? Because it does sound rather fancy.MAYSOON - Well, I got it for my masterful cricket playing. That's the sports category that was chosen. Her Abilities is a really cool award. There were over 200 nominations, somehow I was chosen in an elite group of women who are disabled but are also fabulous. It's interesting getting awards at this point in my life because I feel like that happens more at the tail end, so I see it as a threat to my life. But I'm excited. It really is an important award and I'm doing a horrible job of hyping it up. KATE - Well it's the first global award honouring the achievements of disabled women. And you yourself, you have cerebral palsy.MAYSOON - I do.KATE - And you've received this for your incredible work in the comedy world, fighting prejudice in a very funny way?MAYSOON - No, not really.KATE - No? Okay, fair enough.MAYSOON - So my comedy is more about making people laugh but my advocacy work that I do outside of my comedy is all about mainstreaming disability in the media. So a study was done in the United States which has a very different number game than you all have in the UK. But in the United States we're 20% of the population and only 2% of the images that you see on TV. Of that 2%, 95% are played by nondisabled actors, and I've spent the past twenty years trying to convince people that visibly disabled roles need to be played by actually disabled actors, because it's cartoonish, offensive and inauthentic for nondisabled actors to play disabled on TV. So that's the work I'm doing.SIMON - And right now that does seem to be taking hold. I feel there's that conversation a lot more than ever before.MAYSOON - No.SIMON - You're not sure?MAYSOON - No. No, it's horrific in the United States. One of the biggest shows right now on American television is called 'The Good Doctor' and it's a non autistic actor playing an autistic character. We still have people playing wheelchair users. There's been a small, small, small advance. Ryan Murphy, who was really bad at casting disabled people in disabled roles, in his new show, 'The Politician', cast three disabled people in disabled roles. So that's a slight advance.KATE - I was going to say, I saw that one, and that's really good. And then there's 'Atypical' also. Netflix.MAYSOON - 'Atypical' is horrifying, because the actor's not autistic. It's a bad example. [laughs] KATE - No, but he's not autistic but they do cast around him a lot…MAYSOON - So it's horrible.KATE - For disabled people. MAYSOON - So it's horrible. So it's horrible. The lead is not autistic and it's inexcusable in 2019. It's really inexcusable. And I find it even more offensive when the lead is not cast with a disabled actor and they throw us the chum of like, here's an extra really using a wheelchair. It's even more offensive, it's like saying…KATE - There's a lot of people in 'Atypical'.MAYSOON - They're good enough to be sidekicks, but it doesn't matter, right? KATE - Hmm-hmm, okay. MAYSOON - And I'm dead serious about this, even though I kid a lot, really think about what you're saying. It's inexcusable that the lead, the main character, would not be played by a disabled actor. It's inexcusable. The talent is out there, and what you're saying to people is, sure you can be a sidekick, you can be an extra, but you definitely can't be a lead. We definitely need to have a non disabled person playing the lead, but you know what? Let's just use it as a side, so that, you know, Kate can feel like we're not the worst people on earth and give us a pass.KATE - But I just feel like… Yes, I agree, like…MAYSOON - Tell me.KATE - Well, I think that it is difficult, but I also think that at least progress is being made in some areas, and I think in the UK…MAYSOON - Where?KATE - In the UK we're doing a lot better. MAYSOON - Oh yeah, in the UK definitely.KATE - We are massively getting to a point where…SIMON - There's a playwright, Jack Thorne who, he's an absolute… He's an awesome playwright, he's written 'Harry Potters' and he is absolutely insistent. Liz Carr, previous of the Ouch domain, there is a debate…MAYSOON - Yes, amazing.SIMON - There are things that happen, yeah, but also Liz is saying it's not enough yet. She's a bit the same as you, Maysoon. I think there is progress, but not enough. KATE - It's progress but not enough no. I mean, obviously not enough.MAYSOON - I just think it's obscene and absurd that a show like 'Atypical' would ever get green lit with the main character being disabled and the actor not being disabled. It's just grotesque.SIMON - It feels weird.MAYSOON - And then also, we joke about this a lot, if you are going to be disabled by American television, and like I said, the UK is leaps and bounds ahead of us, you'd better be a white man. You'd really better be a white man. Like we do not have room for women or people of colour, it has to be a white man. KATE - It's funny because in the UK a lot of our successful disabled actors are women, because we've got Genevieve Barr, we've got Ruth Madeley. SIMON - Yes.KATE - Cherylee Houston, Liz Carr. Like it's white, definitely white women, but women.SIMON - Maysoon, your comedy, we had this debate earlier on, you said that your comedy isn't out there to educate. We do comedy at Abnormally Funny People, something I'm involved in, and they go, "Oh we love you because we learn from you." We're going, "No, no, no, we're meant to make you laugh." Do you have to push back as well? Do you have to clarify that?MAYSOON - No, because the stuff that I do is so all over the place that like if they're learning from me I can't stop them, which is totally fine. Like I'm fully aware that a lot of times I'm the first functional disabled adult people have seen. I get that. So I can't push back and be like, no you cannot learn from me, just laugh you fool. But like a lot of times I'm talking about, you know, squirrels or Britney Spears and honestly, if you're getting educated on that that's fine. But, you know, my comedy actually started as… I was a terrible person. I'm still pretty bad, but I was a terrible person and I grew up watching a comedian called Richard Pryor and another guy called Andrew Dice Clay and I was all about using slurs and being offensive and being edgy and definitely not out there to teach people. My comedy evolved and I became a lot more vocal about being Arab and Muslim in the United States, post 9/11, which I think was why people started thinking that I was educating people, but it was really just talking about what it was like to live my life in this country. And like I said, people might learn from what I'm talking about, but it's not my intention, my intention is to make them laugh. Sometimes I'm really shallow, sometimes I'm really political, sometimes I am, you know, teaching them something but it's not my goal ever to educate. If that was my goal I would become a preacher. SIMON - You're nodding, Tilly?TILLY - Oh yeah, I really feel like that. I feel like often people are like oh what you're doing is so amazing because you're like challenging all these preconceptions and stuff, and I'm like, well I'm just living, like I wrote these songs for me, I wrote them because they're how I feel. I'm just talking about my life. Maybe some days I wake up and I'm like, oh yeah, I just really feel that people should know about this thing and I'll write about it, but most of the time I just feel cross or happy or, I don't know, I want to express something, like when I'm feeling something really overpowering and I feel like I can't do anything other than write it down. That's the only way I've ever written, so I feel like the purpose of that isn't necessarily to educate but people still learn from it and I'm kind of happy with that. It's like a sweet middle ground almost. MAYSOON - And I definitely have that happen, when something like so offensive happens, whether it's anti disability or anti Palestine, and I feel like okay, I really need to go out there and do a joke that kind of centres the horrifying thing that just happened. It's more about like I want to talk about this right now. KATE  - Maysoon, you've been invited on shows in the US quite a lot to commentate on the news. Have you been watching what's happening over here in the UK recently? Mainly our whole Brexit conundrum.MAYSOON - I am so repulsed. I am so repulsed. I had to drag myself out of the house to come to the Â鶹ԼÅÄ today, because I am so disgusted by your country right now. It is really just obscene what you all allowed to happen. KATE - Well, we're just saying, just…MAYSOON - And what I'm hearing is it's a blow out?KATE - Yeah, so we're recording this on the morning after the General Election that happened yesterday.SIMON - Did you stay up and watch it?KATE - Me? No, I knew that if I saw any exit polls I would not be able to sleep, so…MAYSOON - How many people live in your country?SIMON - Sixty-five million?KATE - Yeah, 64, 65 million. MAYSOON - Sixty-five million. Sixty-five million people, and the only person that you guys could find to elect as a leader is a disgusting bigot. KATE - But I'm just not 100% sure that an Americans you're in a place to comment. How many people are in your country?MAYSOON - Well, so here's the thing about America. First of all, it wasn't a blow out. Hilary Clinton got three million more votes, so even though we are a horrible, disgusting country that colonised the Native Americans and basically murdered them, enslaved an entire people to build our country, we're really not the people to look up to or compare with. But I also felt like you guys saw Donald Trump and that you would learn from it. And the fact that you didn't learn from it and that this was the choice that an entire country made is just really vile. And I'm happy to be on the Â鶹ԼÅÄ, but I'm super disgusted with all of you.SIMON - Now, because we are…MAYSOON - And I get that the whole country didn't do it…KATE - No.MAYSOON - And I have friends on Twitter who are crying about the fact that disabled people are under siege and are actually in danger in the UK now and that is really truly heart breaking.SIMON - So…MAYSOON - But you did this.SIMON - We are the Â鶹ԼÅÄ, Maysoon, which means we have to have some sort of balance. KATE - We are impartial.SIMON - And you said…MAYSOON - I heard about this. SIMON - And you said some very provocative things in there. We did ask Boris Johnson, but unusually, he couldn't come. No, that's not true, we didn't ask him. We don't have anyone to defend that position. MAYSOON - What did I say that was provocative?SIMON - I think the provocative bit was about people dying.MAYSOON - No, but I get that. Tilly, they can't talk. I'll talk to you instead. What do you think it feels like as a Muslim?KATE - Listen. No, we have to say this. We have to say that obviously Boris himself has said that things have been taken out of context.MAYSOON - It's not taken out of context to be like Muslims are dirt. SIMON - Just to clarify. Just to clarify that when I said provocative I was referring to your bit about you were saying people are dying or being killed by something. I always think that's provocative. KATE - But a lot of people have voted for him. He's not here to defend himself and therefore we have to say that he would strongly defend what you're saying about him. But moving on from that. In the US over there, are disabled people courted for their vote? Because I don't know how much as disabled people we have power here.MAYSOON - No. Disabled people are courted for their vote, but thank god in America we can say that Donald Trump is anti-disability, that he's rolling back our rights, that he's a bigot and a racist, and thank god, even when he's not on the radio we don't get push back for facts. But no, the disabled vote is completely ignored. We talk a lot about privilege and how disabled people can have privilege, and there's a lot of disabled people in the United States that have privilege and that are okay seeing other disabled people suffer if they happen to be a different colour or faith. And so that's why Donald Trump has a lot of support in the disability community, because like I said, people would rather have no healthcare and no education if they know that it means that brown and black people suffer.KATE - But do you feel like policies are being written for disabled people in the US?MAYSOON - No. KATE - Because I do feel like some parties try to court votes from disabled people here, but…MAYSOON - No, not in the United States. SIMON - There were some. MAYSOON - Not in the United States. We've had four debates so far and there's been absolutely no mention of disability rights, equal pay, education or violence against disabled people. And the only time disability has been mentioned in a debate is referencing the fact that Elizabeth Warren was a teacher for disabled students, but otherwise we're ignored.SIMON - We're a little bit hamstrung because… I would love to have this as a proper debate but we can't do it. KATE - Because we don't have the stats at our fingers either, so…SIMON - Yeah. If we move on to maybe the slightly more serious areas. You are a trained tap dancer.MAYSOON - I am.SIMON - That doesn't compute. Tell me, I'm thinking cerebral palsy and tap dancing. Have you done it professionally? How do you dance?MAYSOON - I have.KATE - [gasps] MAYSOON - So my parents couldn't afford physical therapy so they sent me to tap class. [laughter] That's how it computes. And I tap danced on Broadway in 2010 and I tap danced on Broadway…KATE - When? Where?MAYSOON - November 4th. Town Hall Theatre, yeah.KATE - Doing what?MAYSOON  - So I'm a huge stand up comic and any time I get a chance to perform on Broadway I tap dance so that I can tap dance on Broadway.KATE - Amazing.SIMON - I adore tap dancing, it gives me goose pimples or goose bumps. I just get so excited, it's such a…KATE - Do you?SIMON - Oh, it's a beautiful form, it's amazing.MAYSOON - It's the best. It's percussion and dance all together, yeah.SIMON -And when you're doing it do you get that thrill? Is there a joy as your feet are…?MAYSOON - There's no joy left in my life, dude. Have you listened to me for the last…? [laughter] SIMON - Now, I didn't want to say that.MAYSOON - I'm literally living in a country where every aspect of me is under siege, so when I tap dance I just cry quietly to myself and wonder when I'll be tap dancing in a camp. That's all I think of right now. SIMON - Someone would almost say you need to find another dream, Maysoon. [laughter]MAYSOON - I've been looking for a good country but there are none, so. So there's no dream to find.SIMON - And that is the title of your new book, and I like this, because this is just… You said it at the top of the show, if your life doesn't turn out the way it is meant to or you expect it, maybe because of disability, you're saying find another way.MAYSOON - No, not because of disability. I'm saying across the board a lot of people dream, and when that dream dies they feel like there's nothing else for them in the world. And I feel like no, like your dream will die and you'll find another and you'll keep finding another, and finally one of them will come true. Or you'll drop dead and it won't matter anymore. But the idea that like we can only have one goal, we can only have one dream, we can only have one thing that we need to be, I find that really restrictive, and I think it's better to, when your life is not going the way you want it, figure out what's your next dream. The same thing for when you have success, like when Tilly wins her first Grammy she's going to find another dream. Like what's the next step when you do achieve your goal?KATE - So what was your dream when you were a child?MAYSOON - To be on the daytime soap opera, 'General Hospital'. And I am now on the daytime soap opera, 'General Hospital'.KATE - No!MAYSOON - I had to find… What do you mean, no?KATE - How? How did you get that? I want to do it.SIMON - Were you tap dancing?MAYSOON - It's a job.SIMON - Were you tap dancing?KATE - Yeah.MAYSOON - No, but I do tap dance in my web series, 'Advice You Don't Want to Hear' that your listeners can find on www.maysoon.com, like the month of May is coming soon dot com. KATE - Is that the one that Joey was on on 'Friends'?SIMON - Yes, was he?MAYSOON - No, he was on 'Days of our Lives'. SIMON - Oh.KATE - Oh yes, okay fine. Similar thing.SIMON - We have 'Doctors.' Is that the equivalent in the UK? It's on at lunchtime.KATE - Or 'Casualty'.SIMON - But yours is daytime. Tell me about it. I was very excited to hear. What sort of part did you have?MAYSOON - I'm playing a lawyer named Zara Amir who has a very shady past that hasn't been written yet. I'm excited to find out. But it's interesting, because she's not written as disabled, which is lovely. So she is because I am. It's not a story line. The script doesn't say Zara limped into the room, I just walk into the rook, and I limp because I do. So it's really nice to not be written as disabled. KATE - So you've actually achieved your dream. So now what are you going to do? Find another dream. What's the next one?MAYSOON - I want to be a talk show host, that's what I want to do.KATE - Okay. MAYSOON - That's my ultimate dream. I'd like to be a co-host on the TV show, 'The View', which has been on television for 22 years and has never had a visibly disabled co-host.KATE - That's the American version of 'Loose Women' I think isn't it?SIMON - Got you, yeah. MAYSOON - Oh, I love that you have a show called 'Loose Women', that sounds fun.KATE - It's quite something. MAYSOON - I could totally do that. SIMON - And they have regular disabled people. Sam Renke, she's been on it several times, she's a regular. KATE - No.SIMON - She's done it. Yes she is.KATE - No. MAYSOON - No. [laughs]SIMON - Well hold up, I'm starting an argument. MAYSOON - It's a fact. Okay, I'm done.SIMON - She's on some chat show regularly.KATE - She's on Jeremy Vine on Channel 5.SIMON - Sorry, Maysoon, we don't want guests anymore, this is me and Kate. We need to put something to bed.MAYSOON - I just want to totally interrupt you because I think…KATE - She might have been on it as a guest once, but she's not a panellist on it.SIMON - Maysoon, come and correct Kate.MAYSOON - In the spirit of Christmas I just want to tell you guys, Santa Claus does exist and Boris Johnson is a lovely, lovely human being who has never spewed a hateful word. And his hair is so cute.KATE - Thank you. Maysoon, thank you so much for being on the show. We've really enjoyed it. Please stay with us while we maybe just transfer to a slightly less controversial guest, just to give us a break for five minutes. MAYSOON - Be controversial, don't give them what they want, dude. Don't give them what they want.SIMON - I would love…MAYSOON - Anyone, listen to me.SIMON - If our editors cut everything else that Maysoon did, just that last three sentences [laughter] they'd go, blimey, she's chilled out. Thank you, Maysoon. Stay there, stay there.KATE - Right. Now if you want the latest show from us just shout, "Ask the Â鶹ԼÅÄ for Ouch" at your smart speaker. It works, trust me. Give it a go now. Simon, try it?SIMON - I got my parents to try it and they now listen to Ouch. KATE - Simply because they shouted at their speaker?SIMON - Yes, and they do tend to shout. They say, "Ask the Â鶹ԼÅÄ for Ouch," and there we were with Sinead Burke for an hour.KATE - Oh, lucky them.SIMON - Yeah.KATE - We're also on the Â鶹ԼÅÄ Sounds app, and other podcast providers. If you want to get in touch email ouch@bbc.co.uk. Â鶹ԼÅÄ Ouch is part of Â鶹ԼÅÄ News.SIMON - Tilly Moses is here. You may have read an article about her on the Â鶹ԼÅÄ News web pages, which I came across and started listening to your music. You sing, you tour, you play the mandolin. What's the mandolin?TILLY - It's a little stringed instrument, like a lute. SIMON - Like a lute. TILLY - Like a medieval… That's genuinely the only way I can ever describe it, is it looks like one of those old medieval instruments that you see paintings of women playing.SIMON - We're going to hear from you in a minute. You are fascinated by disability politics, as people might have gathered from the title of the song we were talking about earlier. And that was called 'The Social Model'. Here's a weird sort of awkward moment where we reveal what we've not revealed yet.KATE - Oh, exciting. Exciting. What disability does Tilly have?TILLY - Oh, drum roll. Fibromyalgia. I think.KATE - Yay!TILLY - We think. KATE - Although I'm going to say to you I think you've got EDS, because you did talk about being hypermobile when you were younger, so I think you're one of us with Ehlers Danlos syndrome. SIMON - What's the difference between fibromyalgia and EDS, for the uninitiated?TILLY - EDS, basically it's like…KATE - Connective tissue disorder.TILLY - Connective tissues are stretchy and it means that things pop out of place. Joints pop out of place and things like that.SIMON - Okay.TILLY - You can dislocate things very easily. The thing is, I am hypermobile, but only in some areas to a certain extent. I'm like right on the edge. So if I dislocate something that's quite rare, it happens maybe once every two years. When it does it's big time and I'm stuck being totally immobile for like… Usually it's my back and it's like…KATE - I'm going to call it. They're both chronic pain conditions. You have hot spots, you have flare ups, but I'm going to call it that soon you're going to get…TILLY - Well, the other fun thing is that I also have like random fainting fits and…KATE - Yeah, you've got POTS.TILLY - Yeah, I've got POTS.KATE - Postural orthostatic tachycardia syndrome, yeah. SIMON - You're dropping a lot of little acronyms and I don't… What's POTS?KATE - Postural orthostatic tachycardia syndrome. It's where your blood pressure changes when you stand up and then you faint because your heart can't pump all the blood round you when you stand up. So a lot of people, again with Ehlers Danlos…TILLY - They're all interconnected. A lot of people who are diagnosed with one are later diagnosed with others. So I fought for my diagnosis and when I got that one I was so thrilled and I never wanted to go near a doctor's office again. So I've just given it a rest since then.SIMON - Tilly, you pre-empted one of my questions. We had a gentleman on who had fibromyalgia and he said he was diagnosed really quickly, and he believes it was because it was a man and generally men might not present with it. He was saying it's really difficult for a woman. So did it take you some time to get a diagnosis?TILLY - Yeah, so I started presenting symptoms from the age of 11 years old after I had meningitis which almost killed me, and my immune system took a huge dip, as you'd expect it to. I was the most energetic child, I was really into sports at that age, and after that I just never really recovered. And I would do things like… There's a picture of me having fallen asleep halfway through climbing a tree. Like that kind of level of exhaustion. Fainting fits happened sporadically over the years, migraines and things like that, and I'd go to the doctor and I'd say, "This thing has happened," and they'd only ever take that one symptom and look at that one symptom and a lot of the time as well when you're a teenager they go, "Oh, it's just hormonal," or…KATE - Or growing pains.TILLY - Oh, it's growing pains, yeah. So I had sciatica for years and I've always had back pain and things like that, and yeah, I've just been in pain since I was 11. And it wasn't until my back joints moved out of place last February and the pain just like wouldn't go away in the rest of my body and it was so excruciating and I went, it's fine, it's just a back injury, like it'll go, it'll go. And in April I went, yeah, I just feel like this isn't a back injury. And my partner and I had a day out in Liverpool and I like honestly passed out at the table at lunch and he had to carry me home on the train. KATE - That's cute.TILLY - Yeah, it was sweet. He was not phased, he never has been. When we got back I went, "Yeah, I think I might need to go to a doctor."KATE - Yeah, because it is a problem that women do get diagnosed a lot later than men, which we've had this conversation before haven't we but…SIMON - Because there is an assumption it must be some other thing and not…TILLY - Some other thing. I was told that it was like mental health related for a while as well, because when I was 16 I had PTSD. It was just all explained like, oh you're just a teenager and also you're mentally unwell, so you're being hysterical, like it's not real. SIMON - Relatively young as an individual but also the diagnosis and so on. You got into disability politics pretty quickly and quite deep. How did this happen?TILLY - So when this kind of revelation happened when I realised that I was chronically ill and my quality of life hit the floor and I was really struggling to deal with it…KATE - So you put it into your music?TILLY - Well first actually I was studying. I was a politics student.SIMON - I was going to say. Okay.TILLY - So I remember going to see one of my seminar tutors, lovely, lovely man. My field was political philosophy. I love the philosophical side and I steer clear of the party politics most of the time because I find it exhausting. I went in to see the seminar tutor and I said, "I'm sorry, things are just going to be a bit behind, I'm not going to meet these deadlines." And he said, "You know what, just… Here you go, have this book." And he handed me a copy of Martha Nussbaum who's a political philosopher. This book is called 'Frontiers of Justice' and it's taking political ideas that have previously been written by, you know, some of the great liberal philosophers of our time, reworking them and writing a whole new manifesto of how we should organise political life around disabled people, and for disabled people. And he said, "I think you're in the perfect position to look at this, because you know what life is like for a relatively able person, but now you're kind of transitioning into this world of disability and I think you could write something really important." And I was just really like, okay, if you think that then that's what I'll do. So I took this book, I read it, and I just dived into it, like I loved it. SIMON - Are there any other disability sort of academic books that knocked you sideways?TILLY - Well, 'The Disability Studies Reader' was my absolute like bible. This huge book, I carried it around with me for about a year. Tom Shakespeare, that chapter in 'The Disability Studies Reader', there's a chapter where he talks about the social model and that for me was really transformative in terms of my understanding of the way I was talking to myself about myself, and also the way that I'd always talked to other disabled people.KATE - Well, you're going to play for us now a song called 'The Social Model'.TILLY - Yeah.KATE - So I really want to hear this. So if you would go up and pick up the mandolin.TILLY - Yeah, I'll do it, yeah. SIMON - It's like the proper chat, "Well, if you want to go and get ready." [laughter] We'll have a quiet couple of minutes with me singing shall we? KATE - Oh, it's never a quiet couple of minutes. Right, so she's just picking up her mandolin, which does look like a lute.TILLY - The big one, yeah.SIMON - I hope you can hear this Maysoon. It's a beautiful, beautiful song. MAYSOON - I'm excited.SIMON - Yeah, it's great. Oh, we should take pictures of Tilly.KATE - Here we go.TILLY- Yeah, so this is 'The Social Model'. [music plays][applause]Thank you.KATE - Wow.MAYSOON - Tilly, your voice is stunning. I was absolutely expecting mediocrity and you blew me away. You have such a beautiful voice.TILLY - Oh, thank you. I'm actually feeling a bit croaky today so I'm glad you think so. MAYSOON - Oh no, I really love it and I clearly don't like pretend. Your voice is really, really stunning. Very beautiful.TILLY - Oh, thank you. Thank you.SIMON - That was a huge treat. Thank you so much, Tilly. I love it when we have musicians and you're… TILLY - Oh, thanks.SIMON - And it's a very modern song about something that is critical. Anyway, the lyrics are great. Okay, that's called 'The Social Model' and whose was the chapter you said beforehand you read?TILLY - Tom Shakespeare.SIMON - Okay, so I was asking because it's kind of cool that we actually have him on the line now.TILLY - [gasps] Oh!TOM - Hello, Tilly.KATE - Hi, Tom.TOM - How are you?TILLY - Oh my goodness! Hi, Tom.TOM - Lovely song, really nice song. Well done.TILLY - Oh thank you. I'm so overwhelmed, I'm going to cry. [laughs] You're one of my heroes.TOM - Oh, bless you, bless you. I'm sorry I'm not in the studio with you. TILLY - Oh, no…TOM - I'm a bit allergic to Simon Minty so I just don't want to get too close. KATE - We appreciate that. TOM - So more to the point I'm assessing some PhD applications from Uganda, so…TILLY - Oh, wow.TOM - Anyway, it's so lovely that you turn academic work, whoever it's by, into songs and reach people, because that's what we're all trying to do. TILLY - Thank you.TOM - But you seem to be doing it rather better.TILLY - Oh no, I don't think so, but thank you so much. Yeah, I just think it's such an important theory and I've read a lot of the things that you've written and I think they're just so important for us as a community, and I just am really privileged I think to have the platform to be able to talk to people about it and hopefully kind of reach them on an emotional level. But yeah, thank you. TOM - Could I set you an assignment please? You may have already done this, in which case you can send it to me, I'd love to hear it, but I wrote a book about sexuality and disability, and as we know there's this big idea that disabled people never have relationships, never have sex, and that we shouldn't even go there. And clearly we do, you know, we get on with it, everybody does, but this is a great taboo. And I think it would be really interesting, given that the genre you're in, you know, there's a lot of romantic songs and very moving songs, to write something about a relationship between, either two people with disability or a person with disability and a person without, showing that actually it's fine, and actually it's not to do with disability at all, we're just like everybody else in that regard.TILLY - So I just released my second album and there is a song on there called 'If Humans Were Houses', which is a love song for my partner. And at the time I wrote it I hadn't really told a lot of people what was going on with my health, most people didn't know that I was disabled yet. When I wrote it I wrote a line about how he takes the weight from under me when I'm tired or feel downbeat. And that is the only reference in the song to disability and it's so fleeting that most people miss it. And the rest is just about how we love each other and he's very supportive and I'm very grateful. [laughs] TOM - And I bet he is too. I bet he is too. It's a two way thing.SIMON - Just to say, Tom, because you are down the line. So when we said Tom is here, Tilly's hands went to her face and she was like [gasps]. It was a real… And then when you…KATE - She was really excited. SIMON - And then when you said I want to…TOM - If you're in London, if you play in London I'll come and see one of your gigs. TILLY - Oh yeah, that would be great. I'd love that. SIMON - When you said that she picked up her phone to make notes…TILLY - Yeah, I wrote it down.SIMON - So clearly she's good at listening to lecturers and professors. TILLY  - Yeah, old habits die hard. TOM - Well, the best thing about writing books or being an academic is that people do read them and they do come up to you and they do email you out of the blue. Clearly your work means a lot to them, just as your music means a lot to the people who listen to it. TILLY - Thank you.TOM - So I think it's a great gift and I'm privileged, so are you, and let's change the world. TILLY - Yeah, thanks Tom. [laughs] Oh!TOM - I'll be at the back. I'm the one in the wheelchair cheering. All right?SIMON - How can anyone not believe that Santa doesn't exist now? [laughter]KATE - Well, exactly.  TOM - I was thinking, Simon, I was thinking about there's all these hats that you see on the market stalls with like bells on and stuff and I really was thinking, oh they look nice, they're warm, I've got a bald head, and then I suddenly stopped myself and said, no, don't go there, that's the world of the elf. It's bad enough that you're short, don't wear a hat. So yeah, I'm a hat free man at the moment. KATE - Oh, I'm a bit disappointed.MAYSOON - So is that a thing in the UK that disabled people don't date?KATE - Well…TOM - Don't what? Yes, of course we date. Yes we date, we date all the time.MAYSOON - No, no, no, I mean is that like really a thing that people think that disabled people don't do that thing, like we're just eternal kids?TOM - There is that perception, yeah. TILLY - Yeah, definitely. That's why I wrote, 'I Am Not a Child', quite explicitly in that song. MAYSOON - So America wins once, and only once, because we definitely don't think that here.SIMON - I want to be academic for a moment, and maybe even a little bit controversial. So Tilly, some of Tom's writing says the social model is good but there are limitations. And some of those limitations are around conditions like yours where it's pain and it's internal and it's not societal. So how did you marry…? Because you still got the lightbulb moment.TILLY - Yeah, I definitely did. I think it doesn't have to be either, I think it can be both. And I think that for me, yeah, the pain sucks, I hate it obviously, it's frustrating. Sometimes the limitations my body gives me are not helpful or they don't feel like well timed, but for me…KATE - Can we just bring Tom in here?SIMON - Yeah, because we actually do have the person who wrote it.TOM - No, I would give Tilly full marks if I was marking that assignment because she's absolutely right. It's both the impairment and the barriers. You've got to remove the barriers because the barriers make it much worse to have the impairments we have. But the impairments are not always a bundle of laughs. And I was listening to you all chattering away before Tilly played that wonderful song, and you were talking about impairments, and that's what… I mean, there's nobody else here is there, we're all disabled, we can have our little secret world, but we moan about it, we moan about pain and pressure sores and bladder infections and depression and all the rest of it, because that is part of it, but it's not the main part, the main part is attitude and barriers. We can change those things, and hopefully we can improve our health as well. And I think most people would like to improve their health, they would certainly like to avoid pain and rightly so, there's nothing wrong with that.KATE - Thank you so much, Tom. We're going to have to let you go I'm afraid. But thank you so much, you've made Tilly's day.TOM - Thank you for having me. Thank you for playing, Tilly.TILLY - Oh, thanks Tom.TOM - See you, Simon and Kate and everybody. Take care, bye.KATE - See you soon, Tom. Happy Christmas.SIMON - Thanks, Tom. Happy Christmas.TILLY - Happy Christmas.SIMO - See you at your next gig, Tilly.KATE - Well, that was delightful. TILLY - Yeah.KATE - Now Tilly, so I tried to learn the guitar. I am always trying to learn the guitar and have been for the last few years, but I find that I can literally do it for probably about 20 minutes and then my hands just spasm up and that's it. So how the heck…? Because obviously I've got a very similar condition to you and chronic pain and stuff. So how the heck do you play the mandolin? Does it not hurt, or is that one place that you don't have the pain?TILLY - I do often have the pain in my arms and my hands and stuff and I often also get shaking, which I think is related to the blood pressure situation I have. I often get real bad shakes and it's actually one of the signs that I realised that, well although a lot of people shake as they come off stage because of the adrenalin thing my hands often shake so hard that when people ask me to sign things it's just like a squiggle, it's really hard. So it can be really tricky, but I think firstly I've been playing it since I was 13, so it's like second nature, I don't think about it, and secondly, when you get up on stage adrenalin is a wonderful painkiller. I might be crying in the green room literally five minutes before I'm about to play a set, and I might have been using my stick all day and wishing I had a chair and all of that, but I can stand up on stage for an hour and play, because adrenalin courses through your body and it gets you through it. And right afterwards it's the worst time in the whole world but like on stage my body doesn't tend to mess around with me too much, it's really odd.MAYSOON - So could you adjust it and actually sit while you're on stage? Because like, I'm a stand up comic and the adrenalin could easily push me through to stand, but then like you said, afterwards I'd be in massive pain, so instead I sit on a high stool, which imitates like standing, so…TILLY - I do sometimes do that, it just depends on how I'm feeling that day. So I just did my first headline tour and I had some consecutive gigs. You're travelling during the day and you're not sleeping in your own bed and then you're performing for an hour every night. You've got a sound check at five and then you don't get off stage until 10.30. It's knackering. It's knackering for people who don't have like chronic fatigue, so the last night I did sit on a stool because I just couldn't do it. Like, no amount of adrenalin in the world. MAYSOON - As someone who's been on tour for 17 years ask whatever accommodations you need because you're going to burn out so quick if you just push through, even if the adrenalin takes over. SIMON - You've talked in your writing, Tilly, about if you kind of had a 'proper job', in inverted commas, and you think it would be quite hard for them to make adjustments. What do you think you might need if you had a regular job?TILLY - I think for me the main thing is like flexibility in terms of hours, because I don't know when I'm going to wake up and not be able to make it to the bathroom. Like that is literally some days, like last week I had a day where I walked 13,000 steps. That actually happened. That hasn't happened in years. And that was right off the back of the tour, I just kept going.SIMON - Were you being chased?TILLY - No, I literally just went out into town with a friend and got home and looked at my pedometer and was like, what just happened? And then two days later I struggled to stand up in the shower, like I could barely make it.KATE - So do you have a wheelchair that you use on those days?TILLY - I wish. SIMON - Right. We need to do disability 101 with a chair here.TILLY - I really need like a motorised one. Because of my joint problems with them popping and things like that…KATE - Yeah, you can't always propel.TILLY - I wouldn't be able to have like a, yeah, a manual wheelchair. KATE - I've got the chair for you, I know what you need.TILLY - Well I don't, so that's helpful. SIMON - How come you haven't got one yet?TILLY - They're extremely expensive and I only graduated during the summer and we're living off my lovely, lovely boyfriend's wage at the minute.SIMON - Do you get PIP or anything?KATE - Art's not paying then?TILLY - No, the arts don't pay. Folk music is great, the audiences are lovely, but the audiences, it's always been a working class political movement, folk music, that's just kind of what it is, and so by necessity you're not making that much money out of it because the audiences don't have it to give it to you.MAYSOON - You should become a comedian, it pays a lot. TILLY - Yeah, I'm not too funny.KATE - Now, you've just got a new scooter. How much did your scooter cost?SIMON - The last two I bought were in the US and they were about a thousand dollars, so £800?KATE - Why did you buy them in the US?SIMON - Because the particular model that I want is only available in the US. That was by accident. The first one I bought was because I was in the US and it broke down, so I had to replace it. TILLY - Yeah. You see also like I get overwhelmed because there are so many things to choose from. Like there are literally hundreds of thousands of models of mobility scooter and I just…SIMON - You have a friend.KATE - Yeah, just test out the one I've got which is a folding one so it goes in the car really easily and it was about £1,500 I think. SIMON - Is there a little bit of threshold denial? Are you like, oh if I have one it'll be different?TILLY - Oh no, I really want one. Like there's absolutely no… I mean, I think there was for a bit, but my breakthrough moment was when my boyfriend and I went on holiday with his family. We went to Venice in the summer, it was amazing. Unfortunately a lot of steps in that city…KATE - I was going to say, it makes Venice very inaccessible.TILLY - Not accessible, but I love it, it's amazing. And we had a great time and I had the assistance before and after in the airport. And that was like a really huge watershed moment for me of being, for the first time ever, a young woman in a wheelchair. And I remember very, very distinctly my partner pushing me a little bit too fast down a ramp, letting go for a second thinking that was really funny and me being like, "Ah-ha!" and laughing loads, and having a great time and just being thrilled that I wasn't have to stand for hours in a queue. I wasn't in searing pain. I sat down for like eight hours, it was brilliant, and thinking this could really improve my life, like if I was doing this every day. But I do remember laughing and I remember a man looking at me like shocked and appalled that a young woman in a wheelchair would be laughing. Because I'm supposed to be miserable aren't I?KATE - Oh, I know. I do that all the time.TILLY - I'm supposed to hate my life and it's like, I don't, I'm having a great time.KATE - Sometimes people will be like, "Kate, you're being embarrassing, you're being embarrassing. People will think you're taking the mickey," and I was like, "I don't care, this is who I am."TILLY - I'm just being a person, yeah.SIMON - My mother used a scooter for the first time for three weeks while we were away in Australia, and she said it's the most pain free she'd been for years. Completely curve ball, Tilly, I have some empathy with you. I remember doing a talk and there were a hundred people there and I did some really deep personal disability education. And I thought wow, these people have got it. And then at the end they came up and said, "Really good talk. So tell me, where do you get your shoes from?" Because I'm an adult man and all they worried about was where I buy shoes or clothes. Do you have moments where you sing these songs, you're exploring and beautifully… and then you're seeing they don't get it?TILLY - Yeah. Yeah, for sure I think.SIMON - An example?TILLY - On the opening night there was this really lovely girl, she was maybe 16 or so, and she literally sobbed into my arms, like she came up to me and she was like, "I never thought I'd hear anyone singing about this stuff, I never thought anyone else would understand," and she like burst into tears. And I mean like I was wet for a while afterwards, like proper crying. So I gave her a CD and then she cried more and I was like, "No! I'm trying to make you happy," and things like that. So sometimes people absolutely get it, but then on the other hand I've had like I think internalised ableism comes into it quite a lot, because I've had quite a lot of people…SIMON - Which is? What is that?TILLY - This kind of, you take in the messages about how being disabled is like the worst thing that can happen to you ever, and I think there's this kind of self-hatred that a lot of disabled people carry around with them and they just spend their whole time wishing they weren't disabled. Because they've been told to do that, like that stuff.SIMON - It's like a self-oppression. KATE - We've all had that.TILLY - We've all had that, and like that's definitely something that if I had…KATE - I don't think Maysoon really feels that anymore.SIMON - No. I had it one day.TILLY - If I hadn't had the access to the books I had the access to at the time that I did I would still be in that place, because when it first happens to you and you're in pain it's horrible.KATE - Maysoon, do you have that?MAYSOON - Internalised ableism?KATE - Yeah.MAYSOON - Oh god no, come on. No, but I'll be like super frank with you all. I happen to be a person who is 100% against elective surgery for children with disabilities, cochlear implants. Anything invasive that changes the body that's not the choice of a child I'm against. So I'm definitely not a cure based person, but, but if someone came up to me today and said, "With the snap of a finger your CP would be gone," I'd be like, snap that [bleep] right now." Like, I'm not even going to pretend that I wouldn't prefer my life without a chronic pain, constant…TILLY - You see, I don't know about that with me.KATE - Really? So you would…MAYSOON - You're 21, Boo. TILLY - Yeah, I mean…MAYSOON - Talk to me again when you're 40, you know?TILLY - Oh yeah, sure. I'm sure it will change throughout my life. MAYSOON - But if I could just complete this one thought, because I think it's really important. It's okay for disabled people to be miserable about having a disability. It really is. And I go out there every day and say I'm disabled and proud, there's no shame in disability, but at the same time, yeah, no, I don't want to wake up and shake every day, that's just ridiculous. I really don't. And I admire and respect people who are like super yeah, I would totally choose the pain. I wouldn't, and that doesn't make me any less proud of being disabled, any less blessed because I am who I am. I'm not ashamed, I do think that I should be a love interest on a TV show and that I deserve equal rights and that we deserve access to education and that being disabled is not worst than being dead. Because people say it all the time, "If I was like you I would kill myself," they say this to me constantly. But no, I would be absolutely lying and completely not telling the truth if I didn't admit that if it could be done with a snap and not like an incredibly dangerous invasive surgery.SIMON - Tell the truth, Maysoon. We want the truth from you. MAYSOON - Yeah, I mean we've got to stop, because I just… And I admire people who are like, no dude, I would never choose to not be in a wheelchair, but I don't believe it.KATE - Would you, Simon? I'm just really interested. Would you? If I could snap my finger and make you tall and no pain? SIMON - Can I be like a politician and then answer the specific question. In the olden days if you were social model you could not say that. I think the sophistication we've got now, if we want to get rid of disability and not impairment that's fine, you can say I don't like the impairment, and I don't like our society, it's all of that. For me personally, no, because I do have consequences. I've had surgeries, I have pain, but I don't want to be taller no, that would be kind of weird. KATE - Would you have the pain away but the short?SIMON - Yeah, absolutely, the problem I've got though is they found drugs now that can get rid of something like achondroplasia, that stop the gene doing what it does to make it short, and the pharmaceutical companies are saying, "Oh we're doing it to get rid of the pain," but what they will do is actually get rid of the height as well. And I'm nervous of that because there's some things that are coming under the radar. Yeah, I don't want pain, that's… And I also don't want people staring and looking at me or taking pictures and all that. But I don't want to be taller, no. That's weird.KATE - I think they're taking pictures of you because you're so handsome.SIMON - There is partly that.MAYSOON - I think there's also a distinct difference between saying if there was a magical cure I would take it, and saying disability shouldn't exist or that we should take any, you know, steps to make autism disappear or these posters that say a disabled free world. I'm not looking for eugenics, I'm just being honest about the fact that no, it's not a picnic, shaking every day.KATE - No.SIMON - Tilly, one sentence.TILLY - Well, I was just going to say that the way that that kind of came into play after I did gigs this year and my tour was that people would come up to me and say, "Oh I have what you have too." And then they'd say, "I love that you're doing this despite it." And I hate that so much, and I don't want to tell them that they're wrong, and the way that they feel about their bodies is fine, but I'm not doing what I do despite my disability, and I hate people saying that to me.SIMON - Your phrase is I do this because of my, not in spite of it. TILLY - Yeah, partly because. Like I mean I was doing it before as well, but like I wouldn't be on this show right now if I wasn't disabled, this is a huge opportunity for me, I've got loads of huge opportunities that have come from my disability. My relationships are healthier. Like all sorts of amazing things have happened in my life because of my disability.SIMON - I think we're going to ignore the editor and just do politics. Come on everybody! KATE - I'm sorry, but we have run out of time. TILLY - Oh, no!SIMON - No!KATE - We could have talked to you for a million years. MAYSOON - Oh, I'm so ready to go home right now. [laughter] I'm so done.KATE - Maysoon, plug your book again. One last time, where can we get it?MAYSOON - My book is called 'Find Another Dream'. It's available on Audible, and everything else I do you can find on maysoon.com and you all are in my prayers.KATE - And congratulations again for your award.MAYSOON - Oh, thank you.KATE - Your Her Abilities award, yeah.SIMON - Congratulations. KATE - And Tilly, where can we find out how to come and see you?TILLY - I keep my website updated. It's tillymoses.com and also you can buy my second album online or listen to it on any streaming site.KATE - Thank you so much for coming on the programme both of you. That's Maysoon Zayid and Tilly Moses, and of course, Tom Shakespeare who dropped in to surprise us there. Now go and look up their stuff online because it is brilliant. SIMON - That's it for the podcast. We are back next month. Thanks to Beth Rose, Niamh Hughes, studio manager, Matilda Mercari, and producer, Damon Rose. KATE - Email ouch@bbc.co.uk if you have any thoughts on guests we should bring into the show. And shout, "Ask the Â鶹ԼÅÄ for Ouch" at your smart speaker every so often to see if we've posted a new podcast. We're on Â鶹ԼÅÄ Sounds too. So until next time, goodbye.SIMON - Bye-bye. [music]MAYSOON - I was absolutely expecting mediocrity and you blew me away.