'My leg amputation was the best day of my life'
Para-swimmer Alice Tai elected to have a below-knee amputation â âIt was the best day of my lifeâ.
Para-swimmer Alice Tai elected to have a below-knee amputation in January, after her arms became so sore from using crutches to get around. Since then sheâs re-learned to swim and is now competing at the Commonwealth Games in Birmingham. Listen to her fascinating story.
July is Disability Pride month â Nikki Fox and Emma Tracey chat about its history and we hear what it means to you.
And debut author Chloe Timms talks about her dystopian novel, The Seawomen. She gives some top-tips to aspiring writers and talks about managing her writing career while juggling her care needs and all the disability life admin that goes with it.
Produced by Keiligh Baker and Emma Tracey with thanks to Elizabeth Hudson
Recorded and mixed by Dave OâNeill
The editors were Beth Rose and Jonathan Aspinwall
Transcript
EMMA- Oh there she is. Eventually.
NIKKI- Iâm sorry, Emma. Iâm sorry, I know. I did go out to a little party last night. But that is not the reason why Iâm late. Itâs 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. Sheâs got something wrong with her ankle at the moment, sheâs more disabled than I am, so I was like, âLibby love, get on the backâ. So she got on the back and we just bombed it down. Turned it up. You know on the scooter youâve 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 itâs brilliant.
EMMA- No way!
NIKKI- Yeah, yeah, yeah.
EMMA- On your scooter?
NIKKI- Yeah, yeah, yeah.
EMMA- Oh, fantastic.
NIKKI- When Iâm in the studio you know sometimes I have to turn it down to tortoise otherwise I take out a camera. When Iâm 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 Iâm not the best driver.
EMMA- So you can literally say, âIâve been haring about all morningâ.
NIKKI- Very good, Emma.
MUSIC- Theme music.
NIKKI- Itâs Access All, the ±«Óătvâs disability and mental health podcast. Iâm Nikki Fox, and as usual Iâm in London.
EMMA- And Iâm Emma Tracey, and Iâm in the Access All studio in Edinburgh, which is basically a broom cupboard, so Iâm just waiting now for Otis the Aardvark and Gordon the Gopher to arrive.
NIKKI- Oh, I didnât 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- Theyâre puppets, they donât need PAs. Coming up later:
CHLOE- I text my friend afterwards, I was like please donât let me forget this moment because this is everything Iâve ever wanted.
NIKKI- You wonât 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. Youâre not that big into sport, are you?
EMMA- Iâm not. Iâm very, very competitive, but not physically active.
NIKKI- How does that work?
EMMA- Well look, Iâm competitive at like Scrabble and cards and you know whoâs 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 doesnât involve screens, and kicking a ball about is quite good. And they love it because theyâre 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 thereâs not much I can do. But I am not bad at boules actually, and I did do a piece for ±«Óătv News where I got to play bocce, and I was actually quite good. They said, âIf you get out of that scooter and get a proper wheelchair, Nikki, you could be quite good at bocceâ. I lived off that for ages.
EMMA- I like sports people, they donât mince their words.
NIKKI- No, they donât. Theyâre like, âItâs fine, itâs going to go crookedâ. They were right, to be fair. Well itâs the Commonwealth Games now, Emma, in Birmingham. The Games involve 72 Commonwealth nations and 5,000 athletes. Itâs the only international competition which hosts non-disabled and parasports as part of the same event. Which is great, isnât it?
EMMA- It is. Itâs good. I think itâs good to maybe trick people into watching the para stuff, and then they go ahead and watch it of their own accord. So youâre watching something and then suddenly para stuff comes up and you go, âOh, thatâs amazing, I want to do thatâ, or, âIt looks coolâ, and then youâll seek it out the next time. And do you know what the great thing is? Usually weâre talking about Team GB, Great Britain, or Para GB, but for the Commonwealth Games each nation fields a team. So youâve got England, Scotland, Wales and Northern Ireland to cheer for. Loads of cheering to be done.
NIKKI- And one of Team Englandâs 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, thatâs not fun. She won lots of international medals, including gold at the 2016 Rio Paralympics. But in January, Alice took to Instagram to reveal sheâd 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, didnât 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 couldnât use crutches, I couldnât 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 couldnât go back to using crutches.Â
Iâd 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 wasnât able to go back on crutches, I couldnât self-propel a wheelchair, so Iâd be in an electric chair, and I was like, âYou know what, if I have an amputation then Iâll have a better quality of life if it goes well. And if it doesnât, then Iâll be in the scenario where I am with both legsâ. It kind of made sense and it was the right time. But itâs been great, to be honest.
NIKKI- I love that. You can tell sheâs a smart cookie though, sheâs someone thatâs had to cope with an awful lot from an early age anyway, and sheâs obviously given it loads of thought.
EMMA- Yeah. Sheâs had so many surgeries so surgery wouldnât have frightened her. Yeah, what a star.
NIKKI- Alice said for her it wasnât 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 Iâd 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 itâs just such a norm in my life. For anyone else itâs such a big deal, but I was like, âThis is the best day of my lifeâ.
EMMA- Alice had this operation in January, right.Â
NIKKI- Yeah.
EMMA- Sheâs 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 itâs 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 Iâve had to adapt to doing with one leg, I think my times could be quicker.
NIKKI- Thatâs amazing.
EMMA- Wow! So itâs going to improve her swimming, they think. But sheâs 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, canât you, you can get infections, it can be painful.
NIKKI- Yeah.
EMMA- So sheâs doing all this with a new impairment to manage. And sheâs been on social media talking about it, you know with all the worry of trolling and all that. Sheâs fearless.
NIKKI- Yeah.
EMMA- Sheâs 22, sheâs fearless, and sheâs smashing it.
NIKKI- Well we say, âGo Aliceâ, eh?
EMMA- Absolutely.
NIKKI- âGo Aliceâ. Now we are joined by former Paralympic swimmer, Kate Grey. Sheâs now the ±«Óătv Parasports reporter, and sheâs 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 donât know, and Iâm sure they do, but youâve got an upper limb impairment, havenât you. I was wondering what you think about Aliceâs experience?
KATE- Itâs such an interesting perspective that she brings, isnât it, because having just assumed that when you have to have an amputation itâs not a choice, youâve just had to do it as the last sort of resort. Whereas sheâs elected for it and, you know, sheâs been thinking about it for many years. Her disability has been from birth, but sheâs 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.Â
But itâs 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 theyâre massively being affected as a result of the pressure sheâs 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 sheâs doing really well. Sheâs just come back from the World Championships in Funchal where she got a silver medal in the 100 metres freestyle, so already you know sheâs proving just months after the amputation that sheâs moving forward.Â
And I love to hear that sheâs saying that her coach believes she can go even faster. Itâs 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- Itâs the lessening of pain, isnât it?
NIKKI- Yeah.
EMMA- I mean I donât 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 isnât spoken about much at all, because a lot of the athletes are like, âDo you know what, Iâm here, Iâm pushing through, Iâm focusing on my sportâ. 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, âOkay, whatâs my next option?â.Â
And I think a lot of people donât realise that you see a disabled person, maybe theyâre missing a limb or theyâre in a wheelchair, the rest of their body is having to compensate for that in some way or another. Youâre putting yourself through something that it wasnât naturally brought into the world to do. So the pain is there, but a lot of them have lived with it all their lives.Â
You know Iâm incredibly wonky, Iâve got all sorts of hip problems, and when I stop swimming and tried out athletics, I realised my knees were not very good because Iâd 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. Itâs 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- Iâm a right wonky donkey too.
KATE- I think itâs the best way to describe us, isnât it, weâre all a bit wonky!
NIKKI- Wonky donkey. Who isnât wonky, eh, in life? And for people that donât know whatâs 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 itâs 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 thereâs always a conversation should they be fully integrated? I think the Commonwealths have found a really nice happy medium with including certain events, so itâs definitely not a full parasport programme. There are eight sports included. Thereâll be 42 parasport events. Biggest programme theyâve 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 thatâs brilliant, and itâs really moving forward.Â
And itâs 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 theyâll be in a village together. I think as someone whoâs competed at a Paralympic Games and been in a Paralympic Village, Iâve always been curious to know what it would be like in the Olympic Village and how it differs.Â
NIKKI- Yeah.
KATE- I think now weâre at a place where itâs not seen as exhibition events, you know, âLetâs just see what the disabled people can do. Letâs invite them along to the party just for the sake of itâ. Now itâs like weâve got the best of the best coming. Itâs going to be high quality competition, and really puts them on a level playing field, as they should be. And itâs just really nice to showcase it here in the UK.Â
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 âvâ three. So itâs going to be a really fun one to watch, anything could happen. And I think itâs going to be a real crowd pleaser. Thereâs a specially made venue at Smithfield Market which looks epic. And theyâre really, really excited about being alongside their able bodied counterparts as well because the atmosphere will be great. And we always know basketballâs an entertaining one.Â
NIKKI- Oh yeah.
KATE- So thatâs just a little taster for you.
NIKKI- That was very good.
KATE- And thatâs 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 wasnât 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 didnât get that last year. So, we will have packed out stadiums and they will get that moment again. And the fact that itâs 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- Thereâs 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- Iâm quite good at bowls. Iâm quite good at bowls, Em.
KATE- Itâs similar to bocce, but obviously itâs 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, thereâs power lifting if youâre feeling a little bit strong in the upper body.
NIKKI- Come on, Emma! Amazing. Oh Kate, thanks so much for joining us today.
KATE- Itâs 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 ±«Óătv. Or you can listen to our sister podcast, Newscast, where Jonnie Peacock has been chatting to Adam.
NIKKI- âI wanna see your Pea-ca-ca-cock, ya Pea-ca-cockâ. That is Katy Perry. Thatâs a Katy Perry song there for you.
MUSIC- Access All.
NIKKI- Emma, you know now weâre coming to the end of July, that also means weâre 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, itâs just how we feel about our disabilities, isnât it?
EMMA- Yeah. It is there to celebrate our equality and our difference. But I do understand why thereâs 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. Iâm not sure how we fix that really without changing the month. And we canât really do that because itâs in July because the ADA, Americans with Disabilities Act, was signed on the 26th of July in 1990. So thatâs how it started.
NIKKI- So weâve kind of adopted this from the US then.
EMMA- Yeah. A bit like Black Friday. Do you know itâs 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 thatâs what it is. I donât think enough people know about it really.
NIKKI- No. And Iâll be honest with you Emma, disability is my whole career, and I you know only recently heard about it. Is that bad?
EMMA- Itâs quite new.
NIKKI- Iâve 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 arenât disabled havenât really got on-board with it. How thereâs a lack of enthusiasm for Disability Pride Month compared to other months.
EMMA- There isnât the same level of merch. Businesses arenât 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 thereâs this whole month dedicated to 15% of the population or whatever weâre saying now, and you know businesses arenât going near it. I just wonder if itâs because itâs quite new, or if itâs quite tricky for people to understand why someone would be proud of being disabled.
NIKKI- And thatâs really depressing. With a marketing head on, Iâd be like why wouldnât somebody just go for it because it makes sense, you know. Thereâs money to be spent. And we all know all of this. We talk about the Purple Pound and all of that kind of stuff. Itâs just a really clever thing to do that would get you a lot of attention and a lot of press. Iâm not saying you should do it for that reason, but it kind of does make sense, doesnât it? Get on-board Disability Pride.Â
EMMA- Yeah.
NIKKI- Is there a flag, Emma?
EMMA- There is a flag.Â
NIKKI- Ooh la la.
EMMA- Itâs 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 sheâd seen it on TikTok.
NIKKI- No!
EMMA- And she was able to describe it to me. So itâs one big stripe, and itâs 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- Thatâs 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, itâs sensory impairments.
NIKKI- Weâre good colours then.
EMMA- Yeah, I like it. Iâm happy to be the green stripe, definitely. But I was just so proud of Frankie.
NIKKI- I know. Thatâs really nice. And TikTok as well.
EMMA- Thereâs a lot of disabled people on TikTok. A lot. Itâs a pity itâs so inaccessible, thatâs all Iâm 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 shouldnât 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 Iâve 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 Iâm 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.Â
EMMA- But I also think you know my kids, because I canât see, I think theyâre empathetic, adaptable and will adapt things for other people, and I think theyâre inclusive. And thatâs because Iâm their mum and I canât see. Iâm 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. Iâve got to that age though, I donât know whether youâre the same, but I like to tell people about how difficult itâs 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 hasnât been the right thing for you, or education hasnât been the right thing for you, you know thereâs pride in areas of your disabled life, thereâs pride to be found.
NIKKI- Yeah.
EMMA- We are doing what weâre 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 Allâers what Disability Pride means to them, and weâve got a little flavour of what we got back when we put that question out.
EMMA- Letâs 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 canât. 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. Poppyâs also got in touch, Emma. She says, âIt means being proud to be me. I like being heard. Iâm restricted to bed full-time, but I still want to speak and to be acknowledged. I have views, rights and ideas tooâ. Awh, thereâs good messages weâve got coming in, havenât we?
EMMA- Absolutely. Really, really strong, and it covers a lot of the elements of Disability Pride. I would say Iâm proud to be me, yeah, definitely.
NIKKI- Yeah, me too. I mean the amount of times I say, âOh I canât, Iâm disabledâ, I love that.
EMMA- Yeah.
NIKKI- Iâm joking. Thank you so much to everyone who got in touch about Disability Pride Month, we couldnât 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 weâve been told that Access All has gone global, Emma.
EMMA- And itâs 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. â0330 1239480. Ooooh. Oooooohâ.
EMMA- Beautiful!
MUSIC- Access All.
NIKKI- âI love Chloe Timms and I cannot lie, you other mothers can deny, when Chloe walks in with her itty-bitty waistâ. 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, arenât you Chloe Timms. Yes, itâs 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, whatâs it about?
CHLOE- Yeah. So itâs being described as The Handmaidâs Tale meets The Shape of Water, which I know is a bit of a weird juxtaposition, but basically itâs a dystopia novel with a slightly fantastical edge. So yes, itâs 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 sheâs very much trapped in this society.
NIKKI- And whatâs it called?
CHLOE- Itâs called The Seawomen.
NIKKI- Lovely. Lovely.
EMMA- And itâs a bit sexy, and thereâs some suspense, and yeah itâs very gripping.
CHLOE- One of my favourite authors is a Scottish writer called Kirsty Logan, and she said it was âunsettling and lushly writtenâ. 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 didnât know, I hadnât just invited all my mates. I text my friend afterwards and I was like please donât let me forget this moment because this is everything Iâve ever wanted, and itâs incredible. Writing is very solitary and you live a lot of your time in your own head basically, so itâs lovely.
NIKKI- Awh.
EMMA- You know lots of disabled people write books about disability, and thatâs really important. But you know youâre Chloe Timms, author of a dark summer read, a bit of a dystopian scary but absolutely brilliant book. Whatâs that like?
CHLOE- Yeah, itâs 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 donât see enough disability representation in fiction. Iâd love to read a wheelchair using Bridget Jonesâ style book, a woman kind of in her 30s, dating and all that.
NIKKI- Yeah.
EMMA- Yeah.
CHLOE- I didnât really set out to write about disability and I havenât 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 itâs something that you need to be able to be quite self-reflective to do that, and I think itâs 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 youâd been wearing a jumper.
CHLOE Yeah.
EMMA- Thatâs the kind of thing that I love. Itâs that information about how an impairment affects you that nobody would ever, ever think about.
CHLOE- Iâve got spinal muscular atrophy, a muscle wasting condition, so like fatigue and muscle tiredness is the thing that is the hardest. In winter itâs the worst because obviously youâre wearing more layers. Thatâs why Iâm a summer girl, and I get really annoyed when people complain about the summer because Iâm like I love it, I donât have to wear as many clothes, and it doesnât weigh me down. So yeah, in the winter like Iâm wearing a jumper and itâs like suddenly your arms are like double the weight, and so typing becomes a lot harder.Â
Iâve got to the point now where Iâm starting to think maybe I should start exploring dictation software, but I donât think my brain and my mouth work at the same time, so itâs quite a different challenge, a different skill, and I really admire people that use dictation software to write. I think itâs something Iâm going to have to look towards in future. But actually what I tend to do is write on my phone because thereâs 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 youâre writing a really long text.
NIKKI- Do you get that as well in winter when you have to put a coat on, everyoneâs like, âWear a coat, itâll keep you warmâ, and youâre like, âI wonât be able to moveâ.
CHLOE- Yes.
NIKKI- âI may be able to blink, but thatâs as good as youâre going to getâ.
CHLOE- And the thing is as well, I donât know about you, Nikki, but when Iâm cold I really struggle to move anyway because your hands donât work as well.
NIKKI- Yeah.
EMMA- So youâre 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 Iâm really, really cold, my mouth just is about three seconds slower than you know what I think Iâm 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 thereâs a problem finding people if youâre 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 thereâs staff sickness and they suddenly ring you up and say, âOh, your carer is going to be an hour and a half lateâ, then suddenly you look at your day and you think, âWell thatâs great, because now Iâm 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 delayedâ. Yeah, that is very difficult. I even find it in terms of my writing. So, if my care is going well and my carerâs going to arrive at half-past eight, then I know by ten oâclock Iâm ready to go.
NIKKI- Yeah.
CHLOE- But if I have a carer off sick, or a carer is late, or Iâve got a new carer that takes a bit longer, and then I think, âOkay, maybe I wonât start my writing until 11â. Then it gets to 11 and my carerâs just left and I think, âUrgh, now I have to kind of motivate myself to get goingâ. Itâs difficult to organise yourself when the organisational side is totally out of your control.
NIKKI- Itâs not just the organisation, but itâs 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, donât you, to be creative.
CHLOE- Yeah.
NIKKI- You donât really need to be thinking about when someoneâs coming and when theyâre not coming, and whoâs coming when and all of that.
CHLOE- Yeah, definitely. Itâs like a lot of like mental admin basically.
NIKKI- Yeah.
CHLOE- Itâs almost like youâve got to move things into place. So say you need to go somewhere for a meeting, so Iâm thinking, âOkay, I need my care moved to this time. Then I need to organise transport. Then I need to book assistance to get on the trainâ. All these things that if one thing goes wrong and you canât get a taxi. I had this experience the other day, couldnât book a disabled taxi because thereâs 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 couldnât get a taxi.Â
It only takes one thing to go wrong like your carer being late, and then suddenly your taxiâs then coming at the wrong time, and the train youâve booked youâre going to miss. You canât travel spontaneously as a disabled person because thereâs so much organisation involved. I donât 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 weâve had conversations, youâd quite like to be in London, wouldnât you, in your own pad. The writer living in London, going out for cocktails, all of that kind of stuff.
CHLOE- Yeah. I mean Iâd love that in life. Thatâs 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 donât. Itâs really challenging, because obviously I went away to university, and then I had to move back home because I couldnât 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 couldnât 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.Â
Yeah, itâs 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 shouldnât have to do a lot of my care, which she does, and sheâs getting on, she doesnât want to be doing my care into her 80s. So I feel kind of guilty for that as well, even though itâs very difficult for me to move out and to live independently. And financially itâs just such a struggle, because as a disabled person receiving support with my care, weâre 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 donât discuss because itâs too frightening a prospect to think about.
NIKKI- Oh Chloe. No, I know. And Emma, you know weâve got a little bit of competition because Chloe also has got her own podcast, and sheâs really good.
EMMA- Sheâs 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 Iâve just read and was really, really good and Iâm 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 dadâs favourite podcast.
EMMA- So much energy. So much variety. We get to meet the best of people. Itâs absolutely awesome.
NIKKI- If youâre listening on 5 Live, then please donât 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 peopleâs voices to be heard on the podcast, on the radio, everywhere, because itâs very important.
NIKKI- Yeah. Even if youâre just telling us about your day. Iâm 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.
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.