'My leg amputation was the best day of my life'

EMMA- Oh there she is. Eventually.

NIKKI- I’m sorry, Emma. I’m sorry, I know. I did go out to a little party last night. But that is not the reason why I’m late. It’s not, I promise you. But I recognise that I was very late. My scooter was actually going faster than Libby could walk, so I made her hop on the back and I just basically bombed us down to the studio.

EMMA- Your PA was making you late so you put her on the back of your scooter?

NIKKI- Yeah, my PA. She’s got something wrong with her ankle at the moment, she’s more disabled than I am, so I was like, “Libby love, get on the back”. So she got on the back and we just bombed it down. Turned it up. You know on the scooter you’ve got a tortoise and hare, I was firmly on the hare setting which is fast.

EMMA- Ooh. So with the scooter you could either go really slow or really fast?

NIKKI- Yeah. Tortoise or hare. Literally there is a picture of a tortoise and a picture of a hare, and it’s brilliant.

EMMA- No way!

NIKKI- Yeah, yeah, yeah.

EMMA- On your scooter?

NIKKI- Yeah, yeah, yeah.

EMMA- Oh, fantastic.

NIKKI- When I’m in the studio you know sometimes I have to turn it down to tortoise otherwise I take out a camera. When I’m on The One Show, I often knock out a sofa. Honestly, Jermaine Jenas and Alex Jones find it hilarious. And then I shoot off set. Yeah, I have to be very, very careful because I’m not the best driver.

EMMA- So you can literally say, “I’ve been haring about all morning”.

NIKKI- Very good, Emma.

MUSIC- Theme music.

NIKKI- It’s Access All, the BBC’s disability and mental health podcast. I’m Nikki Fox, and as usual I’m in London.

EMMA- And I’m Emma Tracey, and I’m in the Access All studio in Edinburgh, which is basically a broom cupboard, so I’m just waiting now for Otis the Aardvark and Gordon the Gopher to arrive.

NIKKI- Oh, I didn’t know we were being joined by all three.

EMMA- Yeah, yeah. You know puppets are disabled, right?

NIKKI- How can the puppets be disabled?

EMMA- Well, they need to be worked by someone else. They need their PAs basically to come alive.

NIKKI- They’re puppets, they don’t need PAs. Coming up later:

CHLOE- I text my friend afterwards, I was like please don’t let me forget this moment because this is everything I’ve ever wanted.

NIKKI- You won’t want to miss our interview with all-star and disability activist, the brilliant Chloe Timms. Emma, can you believe we are 10 years on from the Olympics and Paralympics?

EMMA- That makes me feel really old, because I was part of the team reporting on that.

NIKKI- You were. I kind of know this answer because I know you. You’re not that big into sport, are you?

EMMA- I’m not. I’m very, very competitive, but not physically active.

NIKKI- How does that work?

EMMA- Well look, I’m competitive at like Scrabble and cards and you know who’s going to get the eat the last donut or whatever. But also, I am trying to learn a bit of sports, like the tennis the other week and stuff, so that I can play stuff with my kids that doesn’t involve screens, and kicking a ball about is quite good. And they love it because they’re better than me. And obviously I was totally taken in by 2012, I thought it was fascinating and so exciting.

NIKKI- I do what I can now, but there’s not much I can do. But I am not bad at boules actually, and I did do a piece for BBC News where I got to play bocce, and I was actually quite good. They said, “If you get out of that scooter and get a proper wheelchair, Nikki, you could be quite good at bocce”. I lived off that for ages.

EMMA- I like sports people, they don’t mince their words.

NIKKI- No, they don’t. They’re like, “It’s fine, it’s going to go crooked”. They were right, to be fair. Well it’s the Commonwealth Games now, Emma, in Birmingham. The Games involve 72 Commonwealth nations and 5,000 athletes. It’s the only international competition which hosts non-disabled and parasports as part of the same event. Which is great, isn’t it?

EMMA- It is. It’s good. I think it’s good to maybe trick people into watching the para stuff, and then they go ahead and watch it of their own accord. So you’re watching something and then suddenly para stuff comes up and you go, “Oh, that’s amazing, I want to do that”, or, “It looks cool”, and then you’ll seek it out the next time. And do you know what the great thing is? Usually we’re talking about Team GB, Great Britain, or Para GB, but for the Commonwealth Games each nation fields a team. So you’ve got England, Scotland, Wales and Northern Ireland to cheer for. Loads of cheering to be done.

NIKKI- And one of Team England’s top swimmers is Alice Tai. Now this is fascinating. Earlier this year Alice elected to undergo some life-changing surgery to have a lower leg amputation. Alice was born with clubfoot and had 14 surgeries by the time she was 12. Blimey, that’s not fun. She won lots of international medals, including gold at the 2016 Rio Paralympics. But in January, Alice took to Instagram to reveal she’d had her right leg amputated below the knee. Now just before the Commonwealth Games got underway, Access All spoke to Alice to find out why she made that decision.

ALICE- I was born with club feet, also known as bilateral talipes. I had loads of surgeries as a kid, didn’t really work out. My right foot just got worse and worse and was causing a tonne of pain. And also, I just use crutches everywhere and that was my way of getting around. They were my mobility aid. Then I had to pull out of Tokyo because my ulnar nerves in your arm were inflamed, painful, and I couldn’t use crutches, I couldn’t swim, I was struggling to eat, do anything to be honest. So I had to pull out of Tokyo to have surgery on both arms. And then I couldn’t go back to using crutches.

I’d always asked about amputation as an option since I was young, maybe about 11/12. I went back to my GP and I just asked, because I wasn’t able to go back on crutches, I couldn’t self-propel a wheelchair, so I’d be in an electric chair, and I was like, “You know what, if I have an amputation then I’ll have a better quality of life if it goes well. And if it doesn’t, then I’ll be in the scenario where I am with both legs”. It kind of made sense and it was the right time. But it’s been great, to be honest.

NIKKI- I love that. You can tell she’s a smart cookie though, she’s someone that’s had to cope with an awful lot from an early age anyway, and she’s obviously given it loads of thought.

EMMA- Yeah. She’s had so many surgeries so surgery wouldn’t have frightened her. Yeah, what a star.

NIKKI- Alice said for her it wasn’t a difficult decision, and it actually took her a long time to realise why other people thought it was such a big deal.

ALICE- It took me a while to realise how dramatic it was. Just because I’d mulled over it so much in my own head for so many years it was just almost normal. And also being a Paralympian, I see amputees all the time with varying degrees of mobility, but it’s just such a norm in my life. For anyone else it’s such a big deal, but I was like, “This is the best day of my life”.

EMMA- Alice had this operation in January, right.

NIKKI- Yeah.

EMMA- She’s already won a silver medal in the World Championships. But she has had a lot of work to do to get there, and part of that work was actually learning how to swim again.

ALICE- I think the training, it was just re-learning to swim and not over-compensating, to allow for the imbalance that the amputation caused. So, I had to strip all my strokes back to basics and work really hard with my coach to make sure I was even in the water. But it’s interesting, because now my stroke efficiency is actually better than it was when I had both legs. My swim coach reckons that I can go faster just from my stroke being more efficient. So once we worked on my starts and kind of turns and technical stuff like that, that I’ve had to adapt to doing with one leg, I think my times could be quicker.

NIKKI- That’s amazing.

EMMA- Wow! So it’s going to improve her swimming, they think. But she’s still living with the new impairment of having a stump that she needs to care for.

NIKKI- Yeah.

EMMA- And learning how to walk on a prosthetic, and the ups and downs of waking up in the morning. You know you can be inflamed, can’t you, you can get infections, it can be painful.

NIKKI- Yeah.

EMMA- So she’s doing all this with a new impairment to manage. And she’s been on social media talking about it, you know with all the worry of trolling and all that. She’s fearless.

NIKKI- Yeah.

EMMA- She’s 22, she’s fearless, and she’s smashing it.

NIKKI- Well we say, “Go Alice”, eh?

EMMA- Absolutely.

NIKKI- “Go Alice”. Now we are joined by former Paralympic swimmer, Kate Grey. She’s now the BBC Parasports reporter, and she’s going to be covering the Games. Kate, hello. Thank you for joining us.

KATE- Oh, pleasure to be here. Thanks for having me.

NIKKI- Now Kate, for those who don’t know, and I’m sure they do, but you’ve got an upper limb impairment, haven’t you. I was wondering what you think about Alice’s experience?

KATE- It’s such an interesting perspective that she brings, isn’t it, because having just assumed that when you have to have an amputation it’s not a choice, you’ve just had to do it as the last sort of resort. Whereas she’s elected for it and, you know, she’s been thinking about it for many years. Her disability has been from birth, but she’s gone through the mill with every type of injury, pain, to try and you know keep both her legs and keep her body fully functioning.

But it’s got to the point now that it is affecting her performance and her body all over. Her poor shoulders are so important in swimming, and the fact that now they’re massively being affected as a result of the pressure she’s putting through them to support her legs, that actually the amputation sounds like it is the best option for her. And brilliant to hear that she’s doing really well. She’s just come back from the World Championships in Funchal where she got a silver medal in the 100 metres freestyle, so already you know she’s proving just months after the amputation that she’s moving forward.

And I love to hear that she’s saying that her coach believes she can go even faster. It’s just proof to the brilliant development in prosthetics now, that they can offer her almost more comfort and more of a quality of life by removing the leg and giving her a top quality prosthetic instead.

EMMA- It’s the lessening of pain, isn’t it?

NIKKI- Yeah.

EMMA- I mean I don’t actually think we think enough about lots and lots of Paralympians compete whilst in pain. Is pain talked about in the Paralympic Village or in the sports villages?

KATE- It isn’t spoken about much at all, because a lot of the athletes are like, ‘Do you know what, I’m here, I’m pushing through, I’m focusing on my sport’. And a lot of them have found ways to manage it. Like we heard Alice say, she found ways to make it work for periods of her life. But then it gets to a point you go, “Okay, what’s my next option?”.

And I think a lot of people don’t realise that you see a disabled person, maybe they’re missing a limb or they’re in a wheelchair, the rest of their body is having to compensate for that in some way or another. You’re putting yourself through something that it wasn’t naturally brought into the world to do. So the pain is there, but a lot of them have lived with it all their lives.

You know I’m incredibly wonky, I’ve got all sorts of hip problems, and when I stop swimming and tried out athletics, I realised my knees were not very good because I’d done so much strange compensating with my body to try and swim like an able bodied person, that I then had done strange things to the rest of my body. So, you know I think pain is just something that comes part and parcel with being a disabled person. No pain, no gain, is what these para athletes believe in.

EMMA- Yeah. It’s so interesting.

KATE- A bit of a cliché. But it is, because you know a lot of them have grown up with that all their lives.

NIKKI- I’m a right wonky donkey too.

KATE- I think it’s the best way to describe us, isn’t it, we’re all a bit wonky!

NIKKI- Wonky donkey. Who isn’t wonky, eh, in life? And for people that don’t know what’s different, what is the difference, Kate, between the Olympics and the Paralympics and the Commonwealth Games?

KATE- Well the brilliant thing about the Commonwealth Games is it’s the only multi-sport event that includes fully integrated parasport events. So we obviously know about the Olympics, and then two weeks later the Paralympics take place, and there’s always a conversation should they be fully integrated? I think the Commonwealths have found a really nice happy medium with including certain events, so it’s definitely not a full parasport programme. There are eight sports included. There’ll be 42 parasport events. Biggest programme they’ve ever had at a Commonwealth Games. So, since it got introduced back in 1994, this is the biggest schedule of parasports at a games. So that’s brilliant, and it’s really moving forward.

And it’s nice to see that the likes of Alice Tai will be competing a race next to you know possibly the Olympic Champion. Someone like Adam Peaty will be swimming and warming up in those same areas, and they’ll be in a village together. I think as someone who’s competed at a Paralympic Games and been in a Paralympic Village, I’ve always been curious to know what it would be like in the Olympic Village and how it differs.

NIKKI- Yeah.

KATE- I think now we’re at a place where it’s not seen as exhibition events, you know, “Let’s just see what the disabled people can do. Let’s invite them along to the party just for the sake of it”. Now it’s like we’ve got the best of the best coming. It’s going to be high quality competition, and really puts them on a level playing field, as they should be. And it’s just really nice to showcase it here in the UK.

I should probably mention 3x3 wheelchair basketball. Its debut at the Commonwealth Games, but also its first time ever being competed at a major championship. So wheelchair basketball 5v5. 3x3 is just three ‘v’ three. So it’s going to be a really fun one to watch, anything could happen. And I think it’s going to be a real crowd pleaser. There’s a specially made venue at Smithfield Market which looks epic. And they’re really, really excited about being alongside their able bodied counterparts as well because the atmosphere will be great. And we always know basketball’s an entertaining one.

NIKKI- Oh yeah.

KATE- So that’s just a little taster for you.

NIKKI- That was very good.

KATE- And that’s what the brilliant thing is, some have already had that flavour of a home games and some this will be their first time. And I have to mention you know a lot of these athletes would have competed in Tokyo last year, which obviously is brilliant to compete at a Paralympic Games, but it wasn’t the same, they would have had empty stadiums. And for disabled athletes, the Paralympics is one of the rare occasions where we do get to compete in front of a crowd, and they didn’t get that last year. So, we will have packed out stadiums and they will get that moment again. And the fact that it’s here in Birmingham is just going to be fabulous.

NIKKI- And Kate, just before you go, any sports you think Emma and I could do? Bearing in mind I am useless and sit on my tush on a scooter, and Emma is blind.

KATE- There’s always a sport out there for everybody. The brilliant thing about the Commonwealth Games is that it includes lawn bowls, so there is para lawn bowls.

NIKKI- I’m quite good at bowls. I’m quite good at bowls, Em.

KATE- It’s similar to bocce, but obviously it’s the more traditional sport of lawn bowls. So there is a para element to that as well. So, I think you can definitely get along and have a go at that one, Nikki. And yeah, there’s power lifting if you’re feeling a little bit strong in the upper body.

NIKKI- Come on, Emma! Amazing. Oh Kate, thanks so much for joining us today.

KATE- It’s been good fun.

NIKKI- You are brilliant.

EMMA- Thanks for coming. And thanks also to Alice as well. If you want to hear more from the Commonwealth Games or watch it, you can do so on the mighty BBC. Or you can listen to our sister podcast, Newscast, where Jonnie Peacock has been chatting to Adam.

NIKKI- “I wanna see your Pea-ca-ca-cock, ya Pea-ca-cock”. That is Katy Perry. That’s a Katy Perry song there for you.

MUSIC- Access All.

NIKKI- Emma, you know now we’re coming to the end of July, that also means we’re coming to the end of Disability Pride Month in the UK and the US.

EMMA- Yeah.

NIKKI- Which I first thought was something related to you know gay pride. But no, it’s just how we feel about our disabilities, isn’t it?

EMMA- Yeah. It is there to celebrate our equality and our difference. But I do understand why there’s some confusion, because Gay Pride is at the beginning of July, and Disability Pride is kind of like Black Pride or Gay Pride for disabled people, so there can be some confusion. I’m not sure how we fix that really without changing the month. And we can’t really do that because it’s in July because the ADA, Americans with Disabilities Act, was signed on the 26th of July in 1990. So that’s how it started.

NIKKI- So we’ve kind of adopted this from the US then.

EMMA- Yeah. A bit like Black Friday. Do you know it’s getting bigger and bigger. Brighton has had Disability Pride marches, and it was a Disability Pride day, and then in 2015 on the 25th anniversary, New York made it a month long celebration, which I think is brilliant, because it gives everybody a chance to talk about it a lot more. So that’s what it is. I don’t think enough people know about it really.

NIKKI- No. And I’ll be honest with you Emma, disability is my whole career, and I you know only recently heard about it. Is that bad?

EMMA- It’s quite new.

NIKKI- I’ve noticed a lot of disabled influences like Sam Renke who we had on the show, have been talking about Disability Pride Month and sort of mentioning how other people who aren’t disabled haven’t really got on-board with it. How there’s a lack of enthusiasm for Disability Pride Month compared to other months.

EMMA- There isn’t the same level of merch. Businesses aren’t getting on-board. I did read a funny tweet, which I cannot find now, about how businesses will talk about like National Potato Day and Pie Week and stuff, and then there’s this whole month dedicated to 15% of the population or whatever we’re saying now, and you know businesses aren’t going near it. I just wonder if it’s because it’s quite new, or if it’s quite tricky for people to understand why someone would be proud of being disabled.

NIKKI- And that’s really depressing. With a marketing head on, I’d be like why wouldn’t somebody just go for it because it makes sense, you know. There’s money to be spent. And we all know all of this. We talk about the Purple Pound and all of that kind of stuff. It’s just a really clever thing to do that would get you a lot of attention and a lot of press. I’m not saying you should do it for that reason, but it kind of does make sense, doesn’t it? Get on-board Disability Pride.

EMMA- Yeah.

NIKKI- Is there a flag, Emma?

EMMA- There is a flag.

NIKKI- Ooh la la.

EMMA- It’s pretty new. It was first developed in 2019. And it was changed in 202, because there were a lot of colours and some disabled people were finding it hard to make out and understand. And can I just tell you, my biggest moment of Disability Pride was when my 10 year old niece from Ireland, Frankie, told me about the flag because she’d seen it on TikTok.

NIKKI- No!

EMMA- And she was able to describe it to me. So it’s one big stripe, and it’s a black background with five coloured stripes. She was also able to tell me that the different colours represent the different types of impairments.

NIKKI- Do they?!

EMMA- Yeah, they do. So, red is for physical impairments.

NIKKI- That’s me.

EMMA- Yellow is for cognitive and intellectual.

NIKKI- Yeah.

EMMA- White is for invisible or undiagnosed.

NIKKI- Okay.

EMMA- Blue is for mental illness. And green is for me, it’s sensory impairments.

NIKKI- We’re good colours then.

EMMA- Yeah, I like it. I’m happy to be the green stripe, definitely. But I was just so proud of Frankie.

NIKKI- I know. That’s really nice. And TikTok as well.

EMMA- There’s a lot of disabled people on TikTok. A lot. It’s a pity it’s so inaccessible, that’s all I’m saying. That was a huge moment of pride for me. What are you proud about this Disability Pride Month, Nikki?

NIKKI- I like many things about being disabled, I really do. I guess I think I get to see the world in a slightly different way. It sounds a bit naff really, but I did grow up being the most disorganised disabled person. Everything you shouldn’t do I did, and that often was me relying on compete strangers to help me do things. So, you know I got to see that people are actually quite kind, and I think I’ve got a bit more of a sunnier view because of that, and I want to try and cling onto that for as long as possible. So I’m kind of proud of that really.

EMMA- Yeah.

NIKKI- I think my disability has given me that.

EMMA- And just getting on in a world that is not set up for us at all, you know?

NIKKI- Yeah.

EMMA- But I also think you know my kids, because I can’t see, I think they’re empathetic, adaptable and will adapt things for other people, and I think they’re inclusive. And that’s because I’m their mum and I can’t see. I’m really proud to be a blind mum and to you know pass those things through to the kids and to bring those things out in the kids as well.

NIKKI- I love that, Emma. I’ve got to that age though, I don’t know whether you’re the same, but I like to tell people about how difficult it’s been to get to where we are.

EMMA- Yeah.

NIKKI- Before I used to hide it, and now I like to moan at every given opportunity.

EMMA- I know. But I think even if you know work hasn’t been the right thing for you, or education hasn’t been the right thing for you, you know there’s pride in areas of your disabled life, there’s pride to be found.

NIKKI- Yeah.

EMMA- We are doing what we’re doing because of you know privilege and right place, right time, and lots and lots and lots of different factors, and pride can be found in any disabled life, I think.

NIKKI- Yeah. Well we recently asked all of our lovely Access All’ers what Disability Pride means to them, and we’ve got a little flavour of what we got back when we put that question out.

EMMA- Let’s start with Denny.

DENNY- Disability Pride to me means focusing on the good stuff that my disability brings on what I can do and not what I can’t. Multiple sclerosis has made my time management skills improve and allows me to be more empathetic towards others. Also, winning medals in adaptive indoor rowing, and hopefully getting the chance to be selected for Invictus Games, feature highly on my to-do list.

ALAN- Hi, Alan Harrows. What Disability Pride means to me is being unapologetic about how my disability affects other people and being proud of who I am.

NIKKI- I love that.

EMMA- I love that.

NIKKI- Yeah. Poppy’s also got in touch, Emma. She says, “It means being proud to be me. I like being heard. I’m restricted to bed full-time, but I still want to speak and to be acknowledged. I have views, rights and ideas too”. Awh, there’s good messages we’ve got coming in, haven’t we?

EMMA- Absolutely. Really, really strong, and it covers a lot of the elements of Disability Pride. I would say I’m proud to be me, yeah, definitely.

NIKKI- Yeah, me too. I mean the amount of times I say, “Oh I can’t, I’m disabled”, I love that.

EMMA- Yeah.

NIKKI- I’m joking. Thank you so much to everyone who got in touch about Disability Pride Month, we couldn’t have done this bit without you, and we have loved reading and listening to all of your messages, so keep them coming. Whatever you want us to talk about or look into, send us your messages. You can email us accessall@bbc.co.uk. We want to hear from you wherever you are in the world. Apparently we’ve been told that Access All has gone global, Emma.

EMMA- And it’s growing and growing. You can also contact us on WhatsApp, on 0330 1239480. Sing it, Nikki.

NIKKI- You want me to sing it?

EMMA- Yeah.

NIKKI- Shall I do it to Kate Bush?

EMMA- Yeah.

NIKKI- Here we go. “0330 1239480. Ooooh. Ooooooh”.

EMMA- Beautiful!

MUSIC- Access All.

NIKKI- “I love Chloe Timms and I cannot lie, you other mothers can deny, when Chloe walks in with her itty-bitty waist”. Now if you are looking for a summer read to get stuck into, you are going to love our next guest. She is a debut novelist, writer, and also a bit of a disability rights activist, aren’t you Chloe Timms. Yes, it’s Chloe Timms. Hello. Thank you for coming on the podcast. How are you?

CHLOE- Hi Nikki, lovely to see you, and really happy to be on the podcast today.

NIKKI- So Chloe, tell me about your book, what’s it about?

CHLOE- Yeah. So it’s being described as The Handmaid’s Tale meets The Shape of Water, which I know is a bit of a weird juxtaposition, but basically it’s a dystopia novel with a slightly fantastical edge. So yes, it’s a kind of future set novel about a young woman who is an outsider on an island, and they live in a kind of very strict religious cult who believe in damnation and fear of the outside world, and fear of the sea. So she’s very much trapped in this society.

NIKKI- And what’s it called?

CHLOE- It’s called The Seawomen.

NIKKI- Lovely. Lovely.

EMMA- And it’s a bit sexy, and there’s some suspense, and yeah it’s very gripping.

CHLOE- One of my favourite authors is a Scottish writer called Kirsty Logan, and she said it was ‘unsettling and lushly written’. So that was music to my ears.

NIKKI- Awh, I love that. I want to know now, how is life as an official bona fide published author?

CHLOE- It is so good. I did an event in a local bookshop and they had my name in the window, they had my book in the window, they sold out all the tickets, and it was an audience full of people that I didn’t know, I hadn’t just invited all my mates. I text my friend afterwards and I was like please don’t let me forget this moment because this is everything I’ve ever wanted, and it’s incredible. Writing is very solitary and you live a lot of your time in your own head basically, so it’s lovely.

NIKKI- Awh.

EMMA- You know lots of disabled people write books about disability, and that’s really important. But you know you’re Chloe Timms, author of a dark summer read, a bit of a dystopian scary but absolutely brilliant book. What’s that like?

CHLOE- Yeah, it’s interesting really. I mean I do feel a bit of a hypocrite because I am fully supportive of having disabled characters in novels, and I really wish there were more, particularly in adult fiction because in my opinion there really is a gap in the market, we don’t see enough disability representation in fiction. I’d love to read a wheelchair using Bridget Jones’ style book, a woman kind of in her 30s, dating and all that.

NIKKI- Yeah.

EMMA- Yeah.

CHLOE- I didn’t really set out to write about disability and I haven’t really, although I do think some of the themes, I write about outsiders and not kind of fitting in and having your life restricted. So I do think disability does play a part in my writing. I mean naturally I think writers put so much of themselves into their books, so I think naturally it does come out. But I do want to explore disability in the future. I just feel it’s something that you need to be able to be quite self-reflective to do that, and I think it’s quite a hard challenge. And you know what, sometimes you just want to escape into fiction. Disabled writers, any writer, should be allowed to write about what they like and what they want to write about, without feeling like they have to write about their own life or their own identity.

NIKKI- Yeah.

EMMA- And what about the writing itself. Is being disabled, does that affect how that goes on a day-to-day basis? I heard you say that your arms were really tired because you’d been wearing a jumper.

CHLOE Yeah.

EMMA- That’s the kind of thing that I love. It’s that information about how an impairment affects you that nobody would ever, ever think about.

CHLOE- I’ve got spinal muscular atrophy, a muscle wasting condition, so like fatigue and muscle tiredness is the thing that is the hardest. In winter it’s the worst because obviously you’re wearing more layers. That’s why I’m a summer girl, and I get really annoyed when people complain about the summer because I’m like I love it, I don’t have to wear as many clothes, and it doesn’t weigh me down. So yeah, in the winter like I’m wearing a jumper and it’s like suddenly your arms are like double the weight, and so typing becomes a lot harder.

I’ve got to the point now where I’m starting to think maybe I should start exploring dictation software, but I don’t think my brain and my mouth work at the same time, so it’s quite a different challenge, a different skill, and I really admire people that use dictation software to write. I think it’s something I’m going to have to look towards in future. But actually what I tend to do is write on my phone because there’s a lot less movement. If I just put my phone basically where my keyboard is and use the keyboard on my phone, I can get my typing done a lot quicker. And in a way it does feel less like work, it just feels like you’re writing a really long text.

NIKKI- Do you get that as well in winter when you have to put a coat on, everyone’s like, “Wear a coat, it’ll keep you warm”, and you’re like, “I won’t be able to move”.

CHLOE- Yes.

NIKKI- “I may be able to blink, but that’s as good as you’re going to get”.

CHLOE- And the thing is as well, I don’t know about you, Nikki, but when I’m cold I really struggle to move anyway because your hands don’t work as well.

NIKKI- Yeah.

EMMA- So you’re between a rock and a hard place.

CHLOE- Yeah.

NIKKI- My mouth actually stops working sometimes. If I have to do piece to cameras outside and I’m really, really cold, my mouth just is about three seconds slower than you know what I think I’m saying. I mean these little things. You were also talking there, Chloe, about restrictions and as disabled people who need support to help them live and work. And we know that there’s a problem finding people if you’re set up in an okay place.

CHLOE- I think everyone knows how difficult that care situation is at the moment. I mean I think I read yesterday 150,000 care shortages in terms of employment. I use a care agency. I live at home with my family, which is obviously not ideal being a 34 year old woman. Life is dictated by how well the care is running. So when there’s staff sickness and they suddenly ring you up and say, “Oh, your carer is going to be an hour and a half late”, then suddenly you look at your day and you think, ‘Well that’s great, because now I’m not going to be dressed and showered until lunchtime, so all my plans maybe will have to, you know, go by the wayside or be delayed’. Yeah, that is very difficult. I even find it in terms of my writing. So, if my care is going well and my carer’s going to arrive at half-past eight, then I know by ten o’clock I’m ready to go.

NIKKI- Yeah.

CHLOE- But if I have a carer off sick, or a carer is late, or I’ve got a new carer that takes a bit longer, and then I think, ‘Okay, maybe I won’t start my writing until 11’. Then it gets to 11 and my carer’s just left and I think, ‘Urgh, now I have to kind of motivate myself to get going’. It’s difficult to organise yourself when the organisational side is totally out of your control.

NIKKI- It’s not just the organisation, but it’s also the brain power that it takes to organise it. You need your brain to do your job. And you certainly do as a writer, you need to be sort of free, don’t you, to be creative.

CHLOE- Yeah.

NIKKI- You don’t really need to be thinking about when someone’s coming and when they’re not coming, and who’s coming when and all of that.

CHLOE- Yeah, definitely. It’s like a lot of like mental admin basically.

NIKKI- Yeah.

CHLOE- It’s almost like you’ve got to move things into place. So say you need to go somewhere for a meeting, so I’m thinking, ‘Okay, I need my care moved to this time. Then I need to organise transport. Then I need to book assistance to get on the train’. All these things that if one thing goes wrong and you can’t get a taxi. I had this experience the other day, couldn’t book a disabled taxi because there’s only two firms locally to me that actually have an accessible vehicle, and then one was doing a school run and one was already booked, so I couldn’t get a taxi.

It only takes one thing to go wrong like your carer being late, and then suddenly your taxi’s then coming at the wrong time, and the train you’ve booked you’re going to miss. You can’t travel spontaneously as a disabled person because there’s so much organisation involved. I don’t want to be thinking about my carer or travel, I want to be thinking about my art and my work.

NIKKI- You mentioned there as well about living at home, and I know we’ve had conversations, you’d quite like to be in London, wouldn’t you, in your own pad. The writer living in London, going out for cocktails, all of that kind of stuff.

CHLOE- Yeah. I mean I’d love that in life. That’s the dream, it really is. Obviously earnings are not up to that level yet. As much as people think writers get paid fortunes, they really don’t. It’s really challenging, because obviously I went away to university, and then I had to move back home because I couldn’t afford to stay in Southampton which was where I was at university. I moved back home, I got a job, but again it was a part-time job and again I couldn’t afford to move out of home. And so I feel like I have missed that kind of adult milestone of moving out, having my own independence, living with maybe a live-in carer.

Yeah, it’s really hard, because in some ways it makes you almost feel like a child still having to live with your parents. As much as I love my mum, she shouldn’t have to do a lot of my care, which she does, and she’s getting on, she doesn’t want to be doing my care into her 80s. So I feel kind of guilty for that as well, even though it’s very difficult for me to move out and to live independently. And financially it’s just such a struggle, because as a disabled person receiving support with my care, we’re not allowed to keep savings. It is impossible for me to save any money towards a deposit or towards building my future really, and the future is something that me and my family almost just don’t discuss because it’s too frightening a prospect to think about.

NIKKI- Oh Chloe. No, I know. And Emma, you know we’ve got a little bit of competition because Chloe also has got her own podcast, and she’s really good.

EMMA- She’s absolutely brilliant. But also, she has had Nita Prose who wrote The Maid, which is a huge book, and Bonnie Garmus who wrote Lessons in Chemistry, which I’ve just read and was really, really good and I’m going to go and listen to the Bonnie episode now.

NIKKI- Oh Chloe, I adore you. Honestly, you are brilliant. I am so proud of all your success. Thank you so much.

EMMA- Thank you so much.

MUSIC- Music.

NIKKI- You know what, Emma?

EMMA- Hmmm.

NIKKI- After today, I now know why this is my dad’s favourite podcast.

EMMA- So much energy. So much variety. We get to meet the best of people. It’s absolutely awesome.

NIKKI- If you’re listening on 5 Live, then please don’t forget to subscribe. Contact us with anything you want us to look into, any stories.

EMMA- We want to hear your voices. We want disabled people’s voices to be heard on the podcast, on the radio, everywhere, because it’s very important.

NIKKI- Yeah. Even if you’re just telling us about your day. I’m so nosey, and so is Emma. Get in contact.

EMMA- Yeah.

NIKKI- Thank you so much for listening, and we will see you later alligator.

EMMA- Bye.

NIKKI- Bye.