The Palsy Podcast - Episode 16 - Charlotte Houlton

Ciaran is joined on episode 16 of The Palsy Podcast by Charlotte Houlton. Charlotte talks about her experiences growing up with CP, going to university, moving out and learning to drive. Charlotte is also a bit of an adrenaline junkie, having taking part in adaptive skiing and WMX. Charlotte hope to plan a sky dive for later this year. 

Transcript

SPEAKER_02 0:01

Hello and welcome to the Palsy Podcast with me, Kieran Fitzgerald. I'm a playwright, screenwriter and podcaster from South Wales. And seeing as March is cerebalsy awareness month to market, I've decided to interview interesting people who have cerebalsy from Wales and beyond every day in March. If you like this episode, please stay tuned for more throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to the PALsy podcast with me, Kieran Fitzgerald. This is episode 16, so we're halfway through the month. 16 down to the 15 to go on this marathon of daily podcast episodes. Um raising awareness of cyberpalsy. So if you haven't tuned in before every day this month I'm releasing an interview with a cool person who has CP, cyberpalsy to raise awareness of CP because March is cyberpalsy awareness. And today I'm delighted to be joined by Sherlock Holson. Hi Charlotte, how are you doing? Hi, Kieran, I'm good, thank you.

SPEAKER_03 1:35

How are you?

SPEAKER_02 1:36

Really good, thank you for doing this. Especially relatively short notice.

SPEAKER_03 1:40

No, it's okay. Thank you for having me here. I'm excited to be here.

SPEAKER_02 1:51

Uh what was it like growing up with CP? And was there a moment where you first felt a bit different from other people?

SPEAKER_03 2:01

That's a very good question to start things off. Um growing up with CP, I would say it was an emotional roller coaster. I mean, there's there's good, there's bad, there's there's things in between, you know. Um you I kind of noticed when I was around eight years old, I would say, that I was a little bit different um from my peers, but it didn't really kick in until I was secondary school age. Um, that's when you notice that obviously in primary school you're quite sheltered. A lot of people had never seen anyone in a wheelchair before, so it was it was was new to them. Um what I would say is growing up, I had a lot of physio hybrid therapy, um, you know, any kind of therapies that you can think of. Pretty much I had it hospital appointments, operations, botox, um, which all sounds pretty scary, and I won't sugarcoat it. Like it is, it's it's not great. But also, I have met some of my best friends through things like that. Um, so I met my friend Daniel through physio. Um I I I've met you you through um not through physio things, but through sports and other things.

SPEAKER_02 3:17

So I mean it is kind of like physio. Shout out to Tony or telescope, because of the way he put us through up here is there. So remember you messaging me after your one-to-one saying that you were basically dead, but like it's it's that sort of thing, isn't it?

SPEAKER_03 3:36

Yeah, yeah, it's it's like you feel dead inside, but in a good way. Like, once you recover from it, you're kind of like, Yeah, that was fun, I want to put myself through that again.

SPEAKER_02 3:47

And like, what was school like for you? Did you enjoy school?

SPEAKER_03 3:53

School was an interesting experience. Um, primary school. I went to a specific primary school for um children with special needs. Okay. So you would think that they would have all the right kind of things in place for you to thrive. Very, very different um experience. It my mum was in constant um talks with the headteacher about inclusion and trying to make me included. I remember the one thing was that we did a Christmas concert every year, but I couldn't go up on the stage because the ramp that they had was too steep for health and safety reasons, so I had to go on the side, basically be sidelined.

SPEAKER_02 4:43

And this is in a specialist school for like obviously, like your CP doesn't affect your intelligence, you're very, very bright. So, did you ever feel like frustrated in primary school that you weren't being tested, that you weren't being challenged enough?

SPEAKER_03 5:06

Absolutely, a hundred percent. Um, I think you've you've touched on it there, like there's with CP, it can affect um some people emotionally, intelligently. Um and there's kind of that kind of everyone puts you in that bubble kind of thing without getting to know you first. So there was times, uh especially in primary school, where I definitely would feel like that, or I would feel like you know, I can give more, but you're not giving me the opportunities to let me grow and and give more. Um, so when I went to secondary school, it was it was quite tough because I was in that, like I'd never thought for myself, I'd never redone anything for myself. Um, but shout out to the secondary school that I went to, Bishopstone Comprehensive. Um, they were really, really good at um, they spent the first year getting me out of that, and my one-to-ones were like, no, no, no, like you're gonna have to think for yourself, and if you want to say something, you have to put your hand up and you have to do it.

SPEAKER_02 6:06

Um, but I suppose then in your special school you had all the physio, all the OTs there, which maybe you didn't get in Bishopson. So, like, was that again a different channel? And like, did you get enough support going into ministry in from a special needs school?

SPEAKER_03 6:31

Yeah, but I mean that's a very interesting question because now I look back on it, absolutely not didn't I was kind of just thrust into it, and it was only as I went up through the years in secondary school that more support kind of kind of came into place, um, which makes sense then why I was so kind of quiet and reserved and not wanting to say. I mean, I was also recovering from a major operation as well. Um just got better by the September in time to start. So there was that that was that that was going on um as well. And then I would say around about year eight, as well, was when I realized making friends was was particularly difficult. Again, because I touched on it earlier that no one had really seen anyone in a wheelchair before, so they didn't know how to react. Um, and I was I also got bullied a little bit as well.

SPEAKER_02 7:25

So that how do how did you deal with that? I mean, was that a difficult thing to experience?

SPEAKER_03 7:33

Yeah, yeah. I mean, it's a it was a very difficult um thing to experience because, like, say when I'm in primary school, I kind of had like a sheltered life, especially going um to a special needs school, like all of my friends pretty much had special needs, so just thought it was quote unquote normal.

SPEAKER_01 7:48

Normal, yeah.

SPEAKER_03 7:49

Yeah. Um, and so I basically, in answer to your question of how you how I dealt with it, um, I didn't for a while. I just kind of hid away in my room and just thought it would go away. And then my mum noticed I broke down crying to her, and then she told the head of year, and then the head of year went absolutely mental on the girl that was that was bullying me, and that's kind of how it stopped.

SPEAKER_02 8:18

And like, and then it stopped then after that, you didn't experience it after that. Yeah, and and was there ever did you ever feel almost like an imposter syndrome within that mainstream? Girl, like, I'm not sure whether I fit in here, I've got to prove myself in this situation.

SPEAKER_03 8:42

Absolutely, you took those words right out of my mouth there, because I was about to say I felt like to prove myself, or even like when I didn't, um, there was times when I I felt like I I could fit in, depending on what kind of the environment was. So, like PE lessons, for example, I don't fit in with that at all because I you know I can't I can't be active, and also in school, they're very like they have health and safety. So even if I could do something, I remember we went on a trip to TechnicQuest, and I was really excited because I was like, when we went there in primary school, they used to let all the disabled kids, like all the ones that could crawl, they used to let just get out, crawl right, yeah, yeah, yeah. You know, have a great time. And so I thought, oh yeah, I can do this again, and it's gonna be really fun. But the school had different ideas, um, so they didn't let me, and I was so deflated, I was like, Yeah, you just just ruined that now for me.

SPEAKER_02 9:46

That must have been so disappointing because like you knew you could do it, but uh I I remember being in primary school and I had this trike, right, that I had to use for physio. Uh, but they wouldn't let me have it on the yard during break time. They were like, no, no, we need you to take it out on the yard during your lessons because if it's during break time, you might run somewhere over. So, like, yeah, I missed out on lessons to do that physio type stuff, which is similar to what you're talking about, I guess.

SPEAKER_00 10:23

Yes.

SPEAKER_02 10:24

Um, and like you studied uh no, I wanna talk about one thing before we were going to education. Like your twin sister also helps CP. Um, but she was affected in a different way as I understand that um did that make things easier growing up or more difficult? What was that like?

SPEAKER_03 10:48

I would say it was a it was a little bit of both, to be honest. It was quite um nice when we were younger to know that like even though she's affected in a different way, she still understands it. We used to do like joint physio sessions and things, um, probably just to make it easier for my mum, to be honest, rather than taking like one to one and then one to a whole. But um, yeah, so it was it was quite nice to have that kind of familiarity then. Um, the one thing that I would say that even I still feel now is that um, as you've pointed out, she's affected in a different way, very, very mildly. Um, you wouldn't really, I mean, we would know from the trained eye, but um any anyone who doesn't really know anyone with CP wouldn't look at her and and immediately know.

SPEAKER_02 11:34

Um so whereas you for people who don't know you I'm saying this, you're you're a real k is a use poet. Yeah.

SPEAKER_03 11:44

Yeah, yeah, no, that's that I don't mind you saying that at all. It's that's fact. Um yeah, so um even now I still get it where I'm a bit like uh why do I have to take all of the problems that CP brings? As you said, I'm I'm in a power chair, you know, I um suffer a little bit with like different kinds of infections and things that are related to my CP. My sister's out here wants it around living it in her best life, you know. Um not to say that I'm not, but it's just a bit more difficult for me.

SPEAKER_02 12:18

And and did you ever get frustrated by that?

SPEAKER_03 12:23

Absolutely, yeah, yeah. I um I I still do, to be honest. Like I said, it's um it's one of those things that I kind of I'm like, look, I'm glad that she's not necessarily suffering. Again, not to say that I'm I'm suffering, like I'm looked after and I'm okay, but it's it's one of those things that you just kind of sometimes get down that rabbit hole and you're like, this isn't fair, you know, why is it me? And then you pick yourself back up and and move on, kind of thing.

SPEAKER_02 12:54

Uh moving on a little bit then, like you um you went to uni, um you studied chronology at the University of South Wales. So, why chronology? How did you first get interested in that?

SPEAKER_03 13:13

Yeah, that's a very good question. So I um in college I did sociology. Um I needed another subject to um, I wanted to do this cultural exchange programme called Camp America, but I needed another subject to get me up to full time so that I could do it. So my one-to-one suggested to me, she was like, Oh, so try doing criminology because sociology, um, we were looking at like crime and things, so it would like kind of overlap and wouldn't be as much work. So I was like, that's a good idea. So I went and I did that, and I absolutely just fell in love with it. Like all the case studies, the different I love watching true crime documentaries, anything like that. Um, and so that's what kind of prompted me then to to study it in uni.

SPEAKER_02 14:05

And what was uni like? Because how much of that was during COVID? How much of the uni experience did you get?

SPEAKER_03 14:14

Yeah, that's interesting because my so what I did was I did a foundation degree first uh in college, and then I went on to the final year in uni. So annoyingly, the final year was the year that COVID hit. Um so it was very I I I feel I'm not alone in this, and this isn't a CP thing, but um, I remember I wanted to get that experience of you know going moving away, going to the accommodation. Um and so I paid for it all and I I sorted it all out, and then literally like COVID hit, and with CP, um, as you know, or some of our listeners may not know, but some some viewer uh sorry, some people with CP can be quite vulnerable to things like COVID.

SPEAKER_01 15:05

Yeah.

SPEAKER_03 15:06

So I remember having a conversation with my mum, and I was like, Look, I just I don't think it's it's safe right now for me to go and live in this accommodation because before that I went up there and this boy was telling me he was like, Oh yeah, we had a party here the other day, and there was like 30 plus people and the police turned up and everything.

SPEAKER_02 15:28

Oh my god.

SPEAKER_03 15:31

I was like, this is wild, okay. So we kind of made that decision that I'd be risking my health a little bit if I went there. Um, so I was really gutted about that, uh, especially because I paid for it all in the back, um, didn't get any of the money back or anything.

SPEAKER_02 15:48

Again, I I'm probably not alone there, but and like, do you think that would have been a different experience if you weren't disabled, or do you think it was a fairly universal thing? Like, do you regret it? Do you really feel that you missed out?

SPEAKER_03 16:04

Yeah, I think it's it's I feel like I missed out, but not necessarily on the whole like accommodation thing because now I look back at it, I actually don't think I was mature enough to have potentially moved out anyway. Um I I'd say this because I moved out then a few years later. Um, but I think it was a universal experience in the sense that a lot of people probably made that that decision, kind of not to go away, or they went away and then regretted it. Um the one thing I would say that maybe didn't make it a universal experience was that I had to decide here for my health.

SPEAKER_02 16:45

Yeah. Yeah, and you have to give I'll say for which is not something that other people have to think about.

SPEAKER_01 16:54

Exactly.

SPEAKER_02 16:57

Right. And like we're gonna move my opinion a bit because you told me about this a few months ago last year, I think. WMX. So, first of all, for people who don't know what it is, what is it, and how did you get into it?

SPEAKER_03 17:15

Yeah, so it is um, as you mentioned, I've been a wheelchair. I can use a manual wheelchair, and it's basically it's skateboarding on um skateboard like parks, ramps, and things, but you do it in a specialized, you can do it in a normal manual wheelchair, but it's better if you do it in like a specialized lightweight one, um, just because you can go faster basically. Um and I got into it purely on like a win thing. I was talking to my my friend on Instagram, and she knows Lily Rice, who um is like number one in the UK, she was the first person to land a backflip or this this, right?

SPEAKER_02 17:59

Um does she have CP? Is she eligible for this podcast?

SPEAKER_03 18:04

Unfortunately not. She does she has um a genetic condition. I think we could probably have passed it off CP if I hadn't.

SPEAKER_02 18:13

Damn, it doesn't count anyway.

SPEAKER_03 18:17

Um yeah, so she was like, Oh, get in touch with her, and she's doing an event in Cardiff, and I think you'd you'd like really love it if you went. So I messaged her, she told me about this event thing, and I went not knowing what to expect at all. Like, I just literally rocked up, was like, yeah, it's gonna be a great day. Um, met all these people that were very much better than me at this sport, um, but they were amazing, like it was such a good community feel. Everyone was hogging me out on the ramps. I did have a few um few injuries.

SPEAKER_02 18:54

Um, so what kind of tricks uh were these people doing? And then yeah, what's it like to start out? Because I imagine it's quite a scary thing to do.

SPEAKER_03 19:08

Yeah, it it definitely is. I mean, I'm fueled by fear, so I I'm gonna drive my junkie, I will be like, yeah, you know what? There's a risk to be here, I'm gonna do. Um, but yeah, for maybe someone who's not like that or a bit less like that, it is um it is quite a scary thing. Uh when we were we were there, they weren't doing like wild tricks, they kind of kept it tame. So we were doing um we were dop-ins from the ramps, we were doing um there's like a a rail that one of the boys could like go down a ramp, jump onto the rail, balance on the rail, slide across it, and then jump off.

SPEAKER_02 19:52

Oh, that's cool. That's so cool.

SPEAKER_03 19:56

It's to watch that, and I was like, Yeah, you know what? That's what I want to do. I mean, shout out to Ben. He um he's landed a backflip now in the phone pit, and he I think he's the youngest in the world to landed a backflip.

SPEAKER_02 20:13

That's so cool. Like, did you did you compete in WMX or was it something you did just recreationally?

SPEAKER_03 20:22

It was more kind of recreationally, um, as I found there was quite a lot of barriers to it as well for me to get to a level um of competing. Like, I needed to have someone with me, I couldn't just kind of go on my own. Um because in case you fall over, they need to like pick you up and stuff. Um and so yeah, I didn't really compete, but I had a few summers where I went up to Cardiff and just had the absolute blast, like rocking myself around.

SPEAKER_02 20:52

And you love that adrenaline, don't you? Like you've done WMX, you've done skiing. Are you a bit of an adrenaline jerky? You should love it.

SPEAKER_03 21:04

Absolutely, yeah. I'm a hundred percent. I'm planning my next um adventure at the moment, which is I really I've wanted to do it for years. Um, I really want to do skydive.

SPEAKER_02 21:14

Oh, cool.

SPEAKER_03 21:15

So I've decided that this year for my birthday is gonna be the year.

SPEAKER_02 21:20

Do you know where you're going to do that?

SPEAKER_03 21:23

Yeah. That's that's the thing. Um, so I've I've basically gone through a list of places, and certain places will be like, because you can't walk, you can't do it with us. Um, so I have found one all the way in like rural Manchester that are willing to kind of take me on. So I think it's it's gonna have to be up there.

SPEAKER_02 21:43

Well, that's really exciting. Do let me know how it goes um when you do it. And like you mentioned before, we've mentioned like a little bit about independent living and being independent, which is actually. You know, I haven't done yet something I want to do. I'm on the journey of. So, what was that like for you in terms of making that big step of moving out, getting your own place, learning to drive, all that stuff, which to me seems massive and energy even well, but I know I've got to do it. So give me a little bit of advice here, Charlotte. How did you do it? And what did I do?

SPEAKER_03 22:28

So the first thing I would say is break it down. Um, because you are right, it that's a lot in in quick succession, and sometimes I don't realise like how much I've actually done until I sit and think about it. Um, so in terms of so the driving came first, so we'll we'll talk about that first. I hated it. I never never wanted to kind of learn to drive, I found it really stressful, um, was pretty bad at it for a while.

SPEAKER_02 22:57

Probably not as bad sorry.

SPEAKER_03 23:02

Um, but then I something clicked in my brain. I think it was when I got my job with the police, and it was all the way in Bridge End. Um, and I obviously couldn't drive myself to get this, so I was like having to get trains or having to rely on lifts, and I was like, no, actually, I want this now. Um, and then because I had that moment, everything within my lessons just changed, um, and I eventually then, forced time lucky, um, passed my driving test.

SPEAKER_02 23:36

Give me a bit of context then, because I've been learning for about six months now, and it's not clicking now, it's not going in. How long did it take until not until you passed, but until you felt comfortable and confident? Do you know what I mean?

SPEAKER_03 23:57

Yeah, no, I completely get what you mean. I would say it was about two years, and within that time as well, I also went through three driving instructors because the one I got with motability, I just didn't really get on with. Um, so for anyone who doesn't know, when you have a disability, you can have a motability car, and within that, when you learn to drive, they will give you a set amount of free lessons. Um, and they will also recommend an instructor to you. Um you don't I'm not sure if you know this, Kieran, but you don't actually have to go with that instructor.

SPEAKER_02 24:37

Oh, okay, right, okay.

SPEAKER_03 24:39

I think you do to a point to get your free lessons, but then when your free lessons run out, you can it's free for you can you can do what you want.

SPEAKER_02 24:48

So I went with Now I know that Julie, my driving instructor, will be listening to this because I've told her about it. So Julie, don't worry, I'm not gonna abandon you. Uh just yeah, we'll see see how I'm doing in a few months' time, but go on.

SPEAKER_03 25:06

Yeah, no, that's fair enough. Um, yeah, so I went with my instructor for a while, didn't really kind of get on with it. So I went with uh one that my sister learned with. He was lovely. Um, but then I took so long to learn and to get it that he then retired.

SPEAKER_02 25:23

Right. So you had to start all over again, yeah.

SPEAKER_03 25:29

Yeah, so I had to start all over again with um West Cross School of Motoring with Nathan. He was lovely, so patient, so calm, and with him, that's how I passed, but I don't think it was him, and it was the way he was teaching me, and you know, I'm grateful just in case he listens, I'm grateful to him, but I also think by that point I'd had that shift in myself as well.

SPEAKER_02 25:58

And and what was the difficulty like processing the information? Like, was it like putting those things in order? Because that's a little bit what I'm struggling with, is the sequencing of those actions. Was that what you found difficult?

SPEAKER_03 26:15

Yeah, it was it was a little bit of that, and I think as well, it's it's a lot to think about. Like Nathan would say to me, right, okay, we're gonna like follow road signs now, and I'd be I mean now I just come second nature, but I'd have to be thinking about what I'm doing, as in like driving along and you know, my positioning on the road, and things like that, and then he'd be like, right, follow the you know, follow the signs, or or go first exit on this roundabout, or and I'd be like, that's it's that no, that's too much, it's come up too quickly because I'm thinking about everything else, yeah. Um all I would say to that Q in practice makes perfect.

SPEAKER_02 26:57

Yeah, I've got another lesson tomorrow as we're recording. Keep on it, keep doing it. And so the driving came first, and then you moved out. So, like, that's a massive thing. So, how did you do it? And was it difficult? What was it like?

SPEAKER_03 27:16

Yeah, I vividly remember this because it's it's I find it a little bit of a strange story. So my sister moved out first, and then it was a couple of years, and then I said to my mum, right, I'm ready now, I want my own space. It was more kind of I wanted my own space for my parents at the time.

SPEAKER_00 27:32

Yeah.

SPEAKER_03 27:33

Um, and then so she was like, Okay, I'll help you, we'll we'll we'll figure it out. And then I remember because I got a really, really bad kidney infection, and I was off work for a while, and I was in bed, couldn't move. And so, because of that, I was on Zuppla, just kind of scrolling through after morning, you know, as you do, and I saw my my house that I now live in come up. So I said to my mum, I said, Oh, look at this, it's we we went through everything, and we were like, right, I want a bungalow. Um I can do stairs, but I was a bit like I just preferred to be all on one level, yeah. Um, just easier. So I saw saw this this bungalow come up, and she was like, right, we've we've got to act and we've got to act quickly, um, which is is what we did, and then I I came for a viewing, we kind of fell in love with it, we could see you know how I could adapt it for myself. So that side of it was felt felt like a dream, honestly. I was like, you know, this is great. The hardship kind of came when I then bought got the house. Um, because there's I'm not sure if you know, but you can get like grants and things to disabled physical hours.

SPEAKER_00 28:49

Yeah.

SPEAKER_03 28:50

Um, but that is it's a very long-winded process, and it's also very like I would say screwed up because they said to me, um, I called them and they were like, right, because you have somewhere to live currently, you're looking at like two years before we can even help you.

SPEAKER_02 29:12

So basically you had to declare yourself homeless.

SPEAKER_03 29:16

Yeah, yeah, basically, I did, yeah. And then um, which I then didn't do, but only because we had that on our previous house that I lived in with my parents when we couldn't afford to do all of the um adaptions and everything for me. So I I sort of was like, I know what it's like to be that child and to be someone in in dire need of it. So I don't want to take away from someone who might be in that position.

SPEAKER_01 29:43

Yeah.

SPEAKER_03 29:44

Um so I didn't do that, but then they were like, Yeah, it'll be two years, they don't really give you a choice either on on things. So, like, they would have just built me a bog standard ramp, they would have built me a bog standard bathroom, potentially with like flooring that I don't like, or you know, handling.

SPEAKER_02 30:02

But would they have given you much choice in terms of location of where the bungalow was, where you wanted to live?

SPEAKER_03 30:12

No, it's all about suitability, and if they find something suitable, even if it's in like the roughest area, you have to take it. That's so bad. And if you don't, they put you down as refusing, um, refusing help. And then I think if you refuse three times, they don't help you.

SPEAKER_02 30:35

Like, so so what do you think should be done to improve that system?

SPEAKER_03 30:40

So I think to first and foremost, improve the system, you need like the waiting times. Two years is is is too long because they said to me you can have a reduction on your council tax as well, so you don't have to pay council tax for, but it's only for six months, and then after that, I had to pay it even though I wasn't living here, and I was like, it's stupid though, because I'm paying council tax on an empty house.

SPEAKER_01 31:08

Yeah.

SPEAKER_03 31:09

Um, so first and foremost, I would say you need they need to reduce the wait times, um, and then they need to kind of give the the client more control.

SPEAKER_02 31:21

Um do you think this is a problem just with like torrential cancel, or do you think it happens quite frequently all over the country?

SPEAKER_03 31:32

Yeah, I think it happens really frequently all over the country, and it also happens regardless of like we're just talking about it in the situation in the context of like houses, yeah. For people with CP, or you know, for that matter, for any physical or mental disability, um, it happens a lot more than than you would think. And it's I understand that you know, some people might not have the capability to to um be able to make those decisions, but if you do, like in our case, then you should be able to advocate for yourself.

SPEAKER_02 32:09

And it also feels like you've got to jump through so many extra barriers to be able to get the basic services that you need. Like if the example, if our friends who are not disabled want to learn to drive, okay, find your driving tractor, either use air car, buy a car, have at it. If they want to get their own place, they go to an estate agent and see what's available to rent. Like the additional labor that you've got to put in if you're disabled. I don't think people realise that.

SPEAKER_03 32:45

Absolutely, 100%. And that's that's for everything. And and one thing that I would say as well that I've noticed, I think um Rosie Jones touched on this a while ago in one show. But you know when you go on, I don't know if you do poverty pollen, but when you go on Zooplow and write moving things, you can put in like your preferences.

SPEAKER_02 33:03

Yes, yeah, I I do that.

SPEAKER_03 33:07

I definitely think that there should be a preference where you can put in that you have a physical disability and you can see if there's any adaptive kind of thing. I know they're few and far between, but they do exist.

SPEAKER_02 33:20

And it's like those little things of like I can manage this, but if they're like that, like it's not gonna be if so it's not access doesn't just mean lifts and ramps, it means different things for different people, and what might be accessible for you might not be accessible for me and vice versa. I think we've got to get away from that binary thing of it being just ramps and lifts and tick boxes, you know.

SPEAKER_03 33:54

Absolutely, absolutely 100%. Um this is why the the work that you're doing on the podcast is so important because especially with something like CP, it's such a broad spectrum disability.

SPEAKER_02 34:07

That's what has become about like no one I've interviewed so far has been affected in exactly the same way as someone else. Like everyone's different, everyone's life experience is different. I'm learning loads from it as well. Well, um, but you've also I'm gonna move on slightly because you've also done something pretty amazing because you did Camp America in 2018, didn't you? Like what was that experience like?

SPEAKER_03 34:40

That was amazing. I I did that at age 18. I literally just was like, I'm gonna get on a plane and I'm gonna go to a foreign country with these people that I don't know. Um, and I knew no one, right? Um, but it was absolutely amazing. I went to a camp um for people with disabilities, right? Because I felt like I had a lot to offer given my my life experience, but also from an access point of view, I was like, well, like there's gonna be people in wheelchairs, it's I don't have to worry about the fact that it's not gonna be accessible, and you don't have to explain that, they'll get it.

SPEAKER_02 35:18

And so what kind of camp was it? Because you can have different ones, can't you? There's sporty ones, there's more theatre type ones, so what kind of camp was it?

SPEAKER_03 35:29

Yeah, so that this was um, like I say, catered specifically for people with disabilities. So there was a range of different activities. They kind of tried to encompass everything that you mentioned. So there was like sporting, some sporting, there was archery, there was swimming. Um, I always remember the day the staff got to go in in the pool. I mean, uh uh it was great, it was chunning. We were just splattering about, it was it was such a good time because there was a hoist and everything, so I could get in.

SPEAKER_02 35:56

Oh god.

SPEAKER_03 35:58

Um and then, yeah, they did they did a bit of everything. They did um like the theatre that you mentioned. Um they did my favourite one was 4th of July because they went all up the 4th of July. And we had we were outside and we had like um the the counsellors they were called would volunteer for the canvas to be able to like they go up to them and they could like throw mud pies in their faces and stuff. Um you'd have then we had fireworks in the evening, which was stunning.

SPEAKER_02 36:35

Yeah.

SPEAKER_03 36:36

It was yeah, it was it was great. I loved it.

SPEAKER_02 36:40

And where in America were you? Where in the States were you?

SPEAKER_03 36:44

Um, so I was in Connecticut, which was quite nice because it's quite local to a lot of of places. Um, so on our weekends off, we would we got on a bus at one point and went to New York.

SPEAKER_02 36:56

Oh amazing.

SPEAKER_03 36:57

Um, we went to Washington. Washington was was amazing. I remember taking a photo of my friend in front of the White House. Um the best thing about that whole experience was as well though that like I actually made friends and no one really bothered about my disability.

SPEAKER_02 37:18

Um because I guess it was kind of normalized, it wasn't a big thing, you didn't stand out, or maybe I can say in that.

SPEAKER_03 37:26

Yeah, yeah, 100%. And and there was a lot of people that had been there before um that were like returners, staff-wise. So um they kind of was just accustomed to it anyway, and then then being so accustomed to it made the newbies more accustomed to it.

SPEAKER_02 37:43

Yeah, that must be such a refreshing thing to experience, not having to explain it, and that's one of the things I feel as well with tennis. We're part of uh a tennis group and Swansea uh Rumbo 20 has left for disabled people, and I feel there, like I don't have to explain my disability to anyone, they just get it. It's just normal. I don't know if you feel safe.

SPEAKER_03 38:12

Absolutely 100%. I've I've said this to to Kewin multiple times and some of the other members actually. I feel like like we're a family, we all just kind of look out to each other. We all not all of us have CP. I think a fair few of us do.

SPEAKER_01 38:26

Yeah.

SPEAKER_03 38:26

Um, but even that, like, we just kind of like Kewan said, disability is normalized. We're not there for our disability. I find I said this to Tony. When I get on that call, I am not my disability.

SPEAKER_02 38:40

No. I I feel like oh, I can just switch off for two hours and play and enjoy and hopefully absolutely destroy our shirt, Josh. Again, you've got no right to reply, Josh, because you're not eligible for this book.

SPEAKER_03 39:00

Josh is seeking legal representation before he says anything.

SPEAKER_02 39:04

But yeah, it's just been so beneficial for me for my mental health to be involved with tennis, and yeah, I hope to see you back on court um this year at some point.

SPEAKER_03 39:19

Yeah, I I 100% my goal is is is to come back this this year. Um because, like you said, it's really help, it helps me physically, but it also helps me mentally as well. It's that switch off, it's that thing of like right, I'm here and I'm here to do this. And if I start thinking about like what I'm going through, I miss my shots.

SPEAKER_02 39:41

Yeah, you've got to be focused on it all the time. And when you hit really good shots, like when you hit it's just a really good feeling, and to see you myself and talking about you progressing, you know, it makes me feel really good about myself.

SPEAKER_03 39:59

Yeah, absolutely, and and so you should, because I'm the same. Oh, I love going back to Tony as well. I absolutely love in your one-to-one's when you hit a good shot, the energy levels and the enthusiasm that comes out of him for you for you as a person then, and it's it's great.

SPEAKER_02 40:19

Shout out to Tony, whoever you're listening to this mate, or watching it. Um it's been lovely. We haven't caught up for a while, and it's been lovely catching up with you today. Uh, the last thing I want to ask you is what is one thing that you wish people knew about cerebral palsy?

SPEAKER_03 40:41

That's that's a really good question. The one thing I wish people knew is that we're not all the same. So if you meet someone with CP, take the time to learn about them, take the time to learn about how it affects them, but also see them as a person.

SPEAKER_02 41:02

Yeah, and I I see this quite a lot with with our friend Adam, who also plays tennis, like he's very bright, very stretched down, but like I see people not taking the time to talk to him, and I think that must be so frustrating for him if I get frustrated on his behalf. Does that make sense?

SPEAKER_03 41:27

Yeah, a hundred percent, because I'm the same as with Handan as well, he's a lovely, lovely guy. Um, and yeah, I just I've seen the same thing, and I've also seen it happen to other players as well. Um people that maybe talk like a little bit slowly, and then people just kind of switch off. They look like they get halfway through the conversation, and it's like that's not that's not fair.

SPEAKER_02 41:52

I and it was one of the things I was wondering about with this podcast, like, as a medium, podcast isn't the best suited for people who've got more severe speech impairments, but I don't think that should be a barrier for people coming on here talking about that. So, like, if you're thinking, Oh, I'd like a bit of a platform for CP Awareness, I'm looking for more guests for the rest of the month. And even if you've got a speech impairment, you know, if people are gonna listen, they're gonna take the time to listen to you. So don't let that be a barrier to go on here if you want to come on and tell your story.

SPEAKER_03 42:33

Absolutely, yeah. Keywin is, I will say, um, he's very good at making accommodations, and and as he said, like, even if you've got a speech impairment, if you talk with like a speech device or something, it you can still speak, you still have that voice.

SPEAKER_02 42:49

Uh, absolutely. Thank you so much, Charlotte, for coming on. It's been lovely to have a catch-up.

SPEAKER_03 42:56

It has, it's been really lovely. I've really enjoyed it, and uh, yeah, thank you for having me.

SPEAKER_02 43:00

That's just about it for this episode of the Poly Podcast. Thank you once again, Shelly Hilton, for joining me. And thank you for listening to this episode of the Poly Podcast. Please like, comment, share, subscribe, send this to people who you think might be interested. Uh tomorrow I'm gonna be joined by Lizzie Alice. Lizzie is an actor who's appeared uh in the West End at the Duke of Young Theatre in the National Theatre in plays like the Grassmanager in the house of Bernardo Alba. She's also recently been in Under Soft Marsh, which has been really sound sky. And she was also in the RD of my play of Iope back in October. So it'll be really good to catch up with Lizzie about the last thing. But uh for now it's goodbye from me and goodbye from Charlotte. Goodbye. Thank you for listening to this episode of the Pulsy Podcast with me, Kieran Fitzgerald. I want to thank my guests for joining me and I hope that you'll stay tuned for the next episode and more throughout March. Thank you.