麻豆约拍

EMMA- Oh there she is. Eventually.

NIKKI- I鈥檓 sorry, Emma. I鈥檓 sorry, I know. I did go out to a little party last night. But that is not the reason why I鈥檓 late. It鈥檚 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鈥檚 got something wrong with her ankle at the moment, she鈥檚 more disabled than I am, so I was like, 鈥淟ibby love, get on the back鈥�. So she got on the back and we just bombed it down. Turned it up. You know on the scooter you鈥檝e 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鈥檚 brilliant.

EMMA- No way!

NIKKI- Yeah, yeah, yeah.

EMMA- On your scooter?

NIKKI- Yeah, yeah, yeah.

EMMA- Oh, fantastic.

NIKKI- When I鈥檓 in the studio you know sometimes I have to turn it down to tortoise otherwise I take out a camera. When I鈥檓 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鈥檓 not the best driver.

EMMA- So you can literally say, 鈥淚鈥檝e been haring about all morning鈥�.

NIKKI- Very good, Emma.

MUSIC- Theme music.

NIKKI- It鈥檚 Access All, the 麻豆约拍鈥檚 disability and mental health podcast. I鈥檓 Nikki Fox, and as usual I鈥檓 in London.

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

NIKKI- Oh, I didn鈥檛 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鈥檙e puppets, they don鈥檛 need PAs. Coming up later:

CHLOE- I text my friend afterwards, I was like please don鈥檛 let me forget this moment because this is everything I鈥檝e ever wanted.

NIKKI- You won鈥檛 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鈥檙e not that big into sport, are you?

EMMA- I鈥檓 not. I鈥檓 very, very competitive, but not physically active.

NIKKI- How does that work?

EMMA- Well look, I鈥檓 competitive at like Scrabble and cards and you know who鈥檚 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鈥檛 involve screens, and kicking a ball about is quite good. And they love it because they鈥檙e 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鈥檚 not much I can do. But I am not bad at boules actually, and I did do a piece for 麻豆约拍 News where I got to play bocce, and I was actually quite good. They said, 鈥淚f you get out of that scooter and get a proper wheelchair, Nikki, you could be quite good at bocce鈥�. I lived off that for ages.

EMMA- I like sports people, they don鈥檛 mince their words.

NIKKI- No, they don鈥檛. They鈥檙e like, 鈥淚t鈥檚 fine, it鈥檚 going to go crooked鈥�. They were right, to be fair. Well it鈥檚 the Commonwealth Games now, Emma, in Birmingham. The Games involve 72 Commonwealth nations and 5,000 athletes. It鈥檚 the only international competition which hosts non-disabled and parasports as part of the same event. Which is great, isn鈥檛 it?

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

NIKKI- And one of Team England鈥檚 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鈥檚 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鈥檇 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鈥檛 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鈥檛 use crutches, I couldn鈥檛 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鈥檛 go back to using crutches.聽

I鈥檇 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鈥檛 able to go back on crutches, I couldn鈥檛 self-propel a wheelchair, so I鈥檇 be in an electric chair, and I was like, 鈥淵ou know what, if I have an amputation then I鈥檒l have a better quality of life if it goes well. And if it doesn鈥檛, then I鈥檒l be in the scenario where I am with both legs鈥�. It kind of made sense and it was the right time. But it鈥檚 been great, to be honest.

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

EMMA- Yeah. She鈥檚 had so many surgeries so surgery wouldn鈥檛 have frightened her. Yeah, what a star.

NIKKI- Alice said for her it wasn鈥檛 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鈥檇 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鈥檚 just such a norm in my life. For anyone else it鈥檚 such a big deal, but I was like, 鈥淭his is the best day of my life鈥�.

EMMA- Alice had this operation in January, right.聽

NIKKI- Yeah.

EMMA- She鈥檚 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鈥檚 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鈥檝e had to adapt to doing with one leg, I think my times could be quicker.

NIKKI- That鈥檚 amazing.

EMMA- Wow! So it鈥檚 going to improve her swimming, they think. But she鈥檚 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鈥檛 you, you can get infections, it can be painful.

NIKKI- Yeah.

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

NIKKI- Yeah.

EMMA- She鈥檚 22, she鈥檚 fearless, and she鈥檚 smashing it.

NIKKI- Well we say, 鈥淕o Alice鈥�, eh?

EMMA- Absolutely.

NIKKI- 鈥淕o Alice鈥�. Now we are joined by former Paralympic swimmer, Kate Grey. She鈥檚 now the 麻豆约拍 Parasports reporter, and she鈥檚 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鈥檛 know, and I鈥檓 sure they do, but you鈥檝e got an upper limb impairment, haven鈥檛 you. I was wondering what you think about Alice鈥檚 experience?

KATE- It鈥檚 such an interesting perspective that she brings, isn鈥檛 it, because having just assumed that when you have to have an amputation it鈥檚 not a choice, you鈥檝e just had to do it as the last sort of resort. Whereas she鈥檚 elected for it and, you know, she鈥檚 been thinking about it for many years. Her disability has been from birth, but she鈥檚 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.聽

But it鈥檚 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鈥檙e massively being affected as a result of the pressure she鈥檚 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鈥檚 doing really well. She鈥檚 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鈥檚 proving just months after the amputation that she鈥檚 moving forward.聽

And I love to hear that she鈥檚 saying that her coach believes she can go even faster. It鈥檚 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鈥檚 the lessening of pain, isn鈥檛 it?

NIKKI- Yeah.

EMMA- I mean I don鈥檛 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鈥檛 spoken about much at all, because a lot of the athletes are like, 鈥楧o you know what, I鈥檓 here, I鈥檓 pushing through, I鈥檓 focusing on my sport鈥�. 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, 鈥淥kay, what鈥檚 my next option?鈥�.聽

And I think a lot of people don鈥檛 realise that you see a disabled person, maybe they鈥檙e missing a limb or they鈥檙e in a wheelchair, the rest of their body is having to compensate for that in some way or another. You鈥檙e putting yourself through something that it wasn鈥檛 naturally brought into the world to do. So the pain is there, but a lot of them have lived with it all their lives.聽

You know I鈥檓 incredibly wonky, I鈥檝e 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鈥檇 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鈥檚 so interesting.

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

NIKKI- I鈥檓 a right wonky donkey too.

KATE- I think it鈥檚 the best way to describe us, isn鈥檛 it, we鈥檙e all a bit wonky!

NIKKI- Wonky donkey. Who isn鈥檛 wonky, eh, in life? And for people that don鈥檛 know what鈥檚 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鈥檚 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鈥檚 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鈥檚 definitely not a full parasport programme. There are eight sports included. There鈥檒l be 42 parasport events. Biggest programme they鈥檝e 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鈥檚 brilliant, and it鈥檚 really moving forward.聽

And it鈥檚 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鈥檒l be in a village together. I think as someone who鈥檚 competed at a Paralympic Games and been in a Paralympic Village, I鈥檝e always been curious to know what it would be like in the Olympic Village and how it differs.聽

NIKKI- Yeah.

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

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 鈥榲鈥� three. So it鈥檚 going to be a really fun one to watch, anything could happen. And I think it鈥檚 going to be a real crowd pleaser. There鈥檚 a specially made venue at Smithfield Market which looks epic. And they鈥檙e really, really excited about being alongside their able bodied counterparts as well because the atmosphere will be great. And we always know basketball鈥檚 an entertaining one.聽

NIKKI- Oh yeah.

KATE- So that鈥檚 just a little taster for you.

NIKKI- That was very good.

KATE- And that鈥檚 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鈥檛 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鈥檛 get that last year. So, we will have packed out stadiums and they will get that moment again. And the fact that it鈥檚 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鈥檚 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鈥檓 quite good at bowls. I鈥檓 quite good at bowls, Em.

KATE- It鈥檚 similar to bocce, but obviously it鈥檚 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鈥檚 power lifting if you鈥檙e 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鈥檚 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 麻豆约拍. Or you can listen to our sister podcast, Newscast, where Jonnie Peacock has been chatting to Adam.

NIKKI- 鈥淚 wanna see your Pea-ca-ca-cock, ya Pea-ca-cock鈥�. That is Katy Perry. That鈥檚 a Katy Perry song there for you.

MUSIC- Access All.

NIKKI- Emma, you know now we鈥檙e coming to the end of July, that also means we鈥檙e 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鈥檚 just how we feel about our disabilities, isn鈥檛 it?

EMMA- Yeah. It is there to celebrate our equality and our difference. But I do understand why there鈥檚 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鈥檓 not sure how we fix that really without changing the month. And we can鈥檛 really do that because it鈥檚 in July because the ADA, Americans with Disabilities Act, was signed on the 26th of July in 1990. So that鈥檚 how it started.

NIKKI- So we鈥檝e kind of adopted this from the US then.

EMMA- Yeah. A bit like Black Friday. Do you know it鈥檚 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鈥檚 what it is. I don鈥檛 think enough people know about it really.

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

EMMA- It鈥檚 quite new.

NIKKI- I鈥檝e 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鈥檛 disabled haven鈥檛 really got on-board with it. How there鈥檚 a lack of enthusiasm for Disability Pride Month compared to other months.

EMMA- There isn鈥檛 the same level of merch. Businesses aren鈥檛 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鈥檚 this whole month dedicated to 15% of the population or whatever we鈥檙e saying now, and you know businesses aren鈥檛 going near it. I just wonder if it鈥檚 because it鈥檚 quite new, or if it鈥檚 quite tricky for people to understand why someone would be proud of being disabled.

NIKKI- And that鈥檚 really depressing. With a marketing head on, I鈥檇 be like why wouldn鈥檛 somebody just go for it because it makes sense, you know. There鈥檚 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鈥檚 just a really clever thing to do that would get you a lot of attention and a lot of press. I鈥檓 not saying you should do it for that reason, but it kind of does make sense, doesn鈥檛 it? Get on-board Disability Pride.聽

EMMA- Yeah.

NIKKI- Is there a flag, Emma?

EMMA- There is a flag.聽

NIKKI- Ooh la la.

EMMA- It鈥檚 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鈥檇 seen it on TikTok.

NIKKI- No!

EMMA- And she was able to describe it to me. So it鈥檚 one big stripe, and it鈥檚 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鈥檚 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鈥檚 sensory impairments.

NIKKI- We鈥檙e good colours then.

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

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

EMMA- There鈥檚 a lot of disabled people on TikTok. A lot. It鈥檚 a pity it鈥檚 so inaccessible, that鈥檚 all I鈥檓 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鈥檛 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鈥檝e 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鈥檓 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.聽

EMMA- But I also think you know my kids, because I can鈥檛 see, I think they鈥檙e empathetic, adaptable and will adapt things for other people, and I think they鈥檙e inclusive. And that鈥檚 because I鈥檓 their mum and I can鈥檛 see. I鈥檓 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鈥檝e got to that age though, I don鈥檛 know whether you鈥檙e the same, but I like to tell people about how difficult it鈥檚 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鈥檛 been the right thing for you, or education hasn鈥檛 been the right thing for you, you know there鈥檚 pride in areas of your disabled life, there鈥檚 pride to be found.

NIKKI- Yeah.

EMMA- We are doing what we鈥檙e 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鈥檈rs what Disability Pride means to them, and we鈥檝e got a little flavour of what we got back when we put that question out.

EMMA- Let鈥檚 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鈥檛. 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鈥檚 also got in touch, Emma. She says, 鈥淚t means being proud to be me. I like being heard. I鈥檓 restricted to bed full-time, but I still want to speak and to be acknowledged. I have views, rights and ideas too鈥�. Awh, there鈥檚 good messages we鈥檝e got coming in, haven鈥檛 we?

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

NIKKI- Yeah, me too. I mean the amount of times I say, 鈥淥h I can鈥檛, I鈥檓 disabled鈥�, I love that.

EMMA- Yeah.

NIKKI- I鈥檓 joking. Thank you so much to everyone who got in touch about Disability Pride Month, we couldn鈥檛 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鈥檝e been told that Access All has gone global, Emma.

EMMA- And it鈥檚 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. 鈥�0330 1239480. Ooooh. Ooooooh鈥�.

EMMA- Beautiful!

MUSIC- Access All.

NIKKI- 鈥淚 love Chloe Timms and I cannot lie, you other mothers can deny, when Chloe walks in with her itty-bitty waist鈥�. 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鈥檛 you Chloe Timms. Yes, it鈥檚 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鈥檚 it about?

CHLOE- Yeah. So it鈥檚 being described as The Handmaid鈥檚 Tale meets The Shape of Water, which I know is a bit of a weird juxtaposition, but basically it鈥檚 a dystopia novel with a slightly fantastical edge. So yes, it鈥檚 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鈥檚 very much trapped in this society.

NIKKI- And what鈥檚 it called?

CHLOE- It鈥檚 called The Seawomen.

NIKKI- Lovely. Lovely.

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

CHLOE- One of my favourite authors is a Scottish writer called Kirsty Logan, and she said it was 鈥榰nsettling and lushly written鈥�. 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鈥檛 know, I hadn鈥檛 just invited all my mates. I text my friend afterwards and I was like please don鈥檛 let me forget this moment because this is everything I鈥檝e ever wanted, and it鈥檚 incredible. Writing is very solitary and you live a lot of your time in your own head basically, so it鈥檚 lovely.

NIKKI- Awh.

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

CHLOE- Yeah, it鈥檚 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鈥檛 see enough disability representation in fiction. I鈥檇 love to read a wheelchair using Bridget Jones鈥� style book, a woman kind of in her 30s, dating and all that.

NIKKI- Yeah.

EMMA- Yeah.

CHLOE- I didn鈥檛 really set out to write about disability and I haven鈥檛 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鈥檚 something that you need to be able to be quite self-reflective to do that, and I think it鈥檚 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鈥檇 been wearing a jumper.

CHLOE Yeah.

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

CHLOE- I鈥檝e got spinal muscular atrophy, a muscle wasting condition, so like fatigue and muscle tiredness is the thing that is the hardest. In winter it鈥檚 the worst because obviously you鈥檙e wearing more layers. That鈥檚 why I鈥檓 a summer girl, and I get really annoyed when people complain about the summer because I鈥檓 like I love it, I don鈥檛 have to wear as many clothes, and it doesn鈥檛 weigh me down. So yeah, in the winter like I鈥檓 wearing a jumper and it鈥檚 like suddenly your arms are like double the weight, and so typing becomes a lot harder.聽

I鈥檝e got to the point now where I鈥檓 starting to think maybe I should start exploring dictation software, but I don鈥檛 think my brain and my mouth work at the same time, so it鈥檚 quite a different challenge, a different skill, and I really admire people that use dictation software to write. I think it鈥檚 something I鈥檓 going to have to look towards in future. But actually what I tend to do is write on my phone because there鈥檚 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鈥檙e writing a really long text.

NIKKI- Do you get that as well in winter when you have to put a coat on, everyone鈥檚 like, 鈥淲ear a coat, it鈥檒l keep you warm鈥�, and you鈥檙e like, 鈥淚 won鈥檛 be able to move鈥�.

CHLOE- Yes.

NIKKI- 鈥淚 may be able to blink, but that鈥檚 as good as you鈥檙e going to get鈥�.

CHLOE- And the thing is as well, I don鈥檛 know about you, Nikki, but when I鈥檓 cold I really struggle to move anyway because your hands don鈥檛 work as well.

NIKKI- Yeah.

EMMA- So you鈥檙e between a rock and a hard place.

CHLOE- Yeah.

NIKKI- My mouth actually stops working sometimes. If I have to do聽 piece to cameras outside and I鈥檓 really, really cold, my mouth just is about three seconds slower than you know what I think I鈥檓 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鈥檚 a problem finding people if you鈥檙e 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鈥檚 staff sickness and they suddenly ring you up and say, 鈥淥h, your carer is going to be an hour and a half late鈥�, then suddenly you look at your day and you think, 鈥榃ell that鈥檚 great, because now I鈥檓 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鈥�. Yeah, that is very difficult. I even find it in terms of my writing. So, if my care is going well and my carer鈥檚 going to arrive at half-past eight, then I know by ten o鈥檆lock I鈥檓 ready to go.

NIKKI- Yeah.

CHLOE- But if I have a carer off sick, or a carer is late, or I鈥檝e got a new carer that takes a bit longer, and then I think, 鈥極kay, maybe I won鈥檛 start my writing until 11鈥�. Then it gets to 11 and my carer鈥檚 just left and I think, 鈥楿rgh, now I have to kind of motivate myself to get going鈥�. It鈥檚 difficult to organise yourself when the organisational side is totally out of your control.

NIKKI- It鈥檚 not just the organisation, but it鈥檚 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鈥檛 you, to be creative.

CHLOE- Yeah.

NIKKI- You don鈥檛 really need to be thinking about when someone鈥檚 coming and when they鈥檙e not coming, and who鈥檚 coming when and all of that.

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

NIKKI- Yeah.

CHLOE- It鈥檚 almost like you鈥檝e got to move things into place. So say you need to go somewhere for a meeting, so I鈥檓 thinking, 鈥極kay, 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鈥�. All these things that if one thing goes wrong and you can鈥檛 get a taxi. I had this experience the other day, couldn鈥檛 book a disabled taxi because there鈥檚 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鈥檛 get a taxi.聽

It only takes one thing to go wrong like your carer being late, and then suddenly your taxi鈥檚 then coming at the wrong time, and the train you鈥檝e booked you鈥檙e going to miss. You can鈥檛 travel spontaneously as a disabled person because there鈥檚 so much organisation involved. I don鈥檛 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鈥檝e had conversations, you鈥檇 quite like to be in London, wouldn鈥檛 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鈥檇 love that in life. That鈥檚 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鈥檛. It鈥檚 really challenging, because obviously I went away to university, and then I had to move back home because I couldn鈥檛 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鈥檛 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.聽

Yeah, it鈥檚 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鈥檛 have to do a lot of my care, which she does, and she鈥檚 getting on, she doesn鈥檛 want to be doing my care into her 80s. So I feel kind of guilty for that as well, even though it鈥檚 very difficult for me to move out and to live independently. And financially it鈥檚 just such a struggle, because as a disabled person receiving support with my care, we鈥檙e 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鈥檛 discuss because it鈥檚 too frightening a prospect to think about.

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

EMMA- She鈥檚 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鈥檝e just read and was really, really good and I鈥檓 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鈥檚 favourite podcast.

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

NIKKI- If you鈥檙e listening on 5 Live, then please don鈥檛 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鈥檚 voices to be heard on the podcast, on the radio, everywhere, because it鈥檚 very important.

NIKKI- Yeah. Even if you鈥檙e just telling us about your day. I鈥檓 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.